pain mangament

by Holly
(Dallas Tx)

what do you guys take when you are in a flare

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pain management
by: Annette Young

Hello there,

Thank you for your post.

Pain management is something that many people with Crohn's disease look into because sometimes the pain can be overwhelming and it’s difficult to focus on day to day life when wracked in deep intense abdominal pain for example. Sadly many people become dependent on painkillers and it can be very harmful to take too many tablets so, discovering new ways of dealing with prolonged pain may be a solution. Sometimes the doctor will prescribe you specific painkillers such as Tylenol but they do have to know your full history before doing so.

Alternative pain management can be simple but effective and includes a heat pad to help with abdominal cramps and any joint pain, it’s a soothing method but it may not work for everybody.

You could also try some deep breathing techniques, these can be calming and enlightening as you breahe in extra oxygen to the brain which helps you to think more clearly as well as being able to release tension on the out breath. Some people guided visualisation by way of pre-recorded CDs can be an excellent way to escape the throes of pain in the first instance, to distract the mind from these painful or uncomfortable feelings and to be able to transport themselves on a guided journey for a period of time.

There are healing meditations using colour to infuse the body and these are to help speed up the healing process. Or there are traditional meditation recordings which can help to transport you to a place of beauty and wonder depending what it is that inspires.

For some people, food is the problem because there is such rawness and soreness inside that even easy to digests foods can aggravate the area so fasting for a period of time can actually help. Try fasting for 2 to 5 hours, and although, you will need food at some point, during the fast just take water.

These may seem simple techniques but they are easy to incorporate into your life and they do help. They are certainly better than taking a lot of traditional painkillers.

Hope this helps.

Annette
Don't be Rude, Be Nice
by: Miss Melinda

I can't get NO Dr. to give me ANYTHING for pain. My neck, shoulder's,elbow's, lower back, both hip's, knees, ankles, and my feet! NEVER top hurting. Can't sleep, what little sleep I get my pain wakes me up. I can't hardly walk, my Dr. won't even sign a paper for me to get a electric wheel chair or a electric scooter to help me get around outside.The 1 thing that I DO NOT want is for people to feel sorry for me! Don't look at me funny OR like you can catch this. Just treat me like you do anyone else.Talk to me like you talk to others.When you see me trying to walk, just smile and say "I hope you have a good day and" GOD BLESS YOU". That would make me :) and have a GOOD DAY. That would help my pain more than anyone would ever know. Thank You. And GOD BLESS ALL OF YOU. Have a SUPER DAY, as we are trying to say in Indiana, for the Super Bowl :)
Life Changing Pain
by: Anonymous

Remicade every 6 wks (which I'm not sure how well it works for my joints because I'm always in chronic pain)
Norco (10 mg of hydrocodone and 325 mg of Tylenol)
Lyrica 75 mg (don't take it that much because it makes me dizzy and hard to wake up to take care of my 3 month old and two yr old)

It's hard to find pain management from a legit pain dr when your younger than 40...good luck and hope you find comfort soon!
pain
by: Anonymous

i have tried several pain medicines in the past one being co-proxamol which was taken off the market in england, you might be able to get it in america. also have had tramadol which is very good for pain but can cause violent nausea and vomiting, but only if you cant tolerate it. i currently take ibuprofen 500mg enteric coated, as you probably know providing you havent got a stoma enteric coated is the way to go with any meds that you are prescribed. hope that was helpful to you

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joint and muscle pain

by Lori
(Cape Cod)

I've had Crohn's for 20 years now and am currently doing well due to the fact that I've seen a holistic practitioner to help with diet and supplements. Recently, I've begun to have hip pain that involves my thighs as well. It's a strong, deep ache that radiates down my legs. It feels like my hip joints are the main area of pain but sometimes it feels like it's the muscles.

It's painful to walk, go up stairs and even sit down. Any thoughts?

Thanks.

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JOINT PAIN AND CROHNS

by BARBIE
(ENGLAND)

Over the last six months my fingers and hands became very painful, my knees are also affected, I am now at the point where I cannot do the simplest of things because it is so painful.

I have been told that this is associated with Crohns and that I should see a rheumatologist (excuse the spelling) I was put forward for this three months ago and still have not heard from the hospital for an appointment.

Nhs service!!!!!

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Joint Pain and Crohn's
by: Annette Young

Hi there,
I am assuming at the time of writing that you have not had a full diagnosis but are concerned that it is Crohn's and have arthritic symptoms too.

Crohn's disease has many side-effects:

Diarrhea
Constipation
Headaches
Joint Pain
Nausea
Rash
Eye pains
Abscesses

Some people experience many symptoms, others experience only a few. Joint pain is quite common however.

Crohn's is an auto-immune disease but so is arthritis and there may be a genetic link. It is important that you are careful as to all of the foods that you eat. Plus, you need to avoid smoking, alcohol and fizzy drinks too.

It can be very difficult to receive a diagnosis. Crohn's symptoms can mirror other conditions and even tests can fail to pick up any problems within the gatro-intestinal tract. This does not mean that problems are not occurring however. I know many people who experienced terrible pain but the tests came back inconclusive. Eventually they received the diagnosis.

There is no cure for the disease. But living with it and understanding it, can make the fear of it go away. It's important to realise that it will not always be bad. Crohn's often enters into a remission period and you are likely to start feeling more human again. Yes flare-ups can occur but it could be years before they do.

I attach some links with some information and hope this helps.

http://www.webmd.com/ibd-crohns-disease/crohns-disease/tc/crohns-disease-topic-overview

http://health.usnews.com/health-conditions/digestive-disorders/crohns-disease/symptoms
Best wishes,

Annette
Chron's & Joint Pain
by: Doug Tally

CD diagnosed and surgery 40 years ago. No hospitalization in 20 years. It's flaring up this Spring for 6 weeks. Currently is my first experience with left knee pain... some indication a week prior the knees were not as usual going up and down stairs. Then without instance or injury pain left me barely hobbling. Days ago went for a bike ride using mostly my right leg and letting the left tag along on its pedal. After the ride my left knee felt almost normal. Next morning was less than normal and then it deteriorated throughout the day to the normal pain.

I'll try the bike again today and see if the pain relief repeats. GI appt next week.
Joint and muscle pain
by: Anonymous

I have had Crohn's for 36 years. Thanksfully, I was in remission for the past 10 years after going on an immune suppressant drug called mercaptopurine (6MP).

Recently, I developed a flare-up. My primary symptoms are joint (ankle) swelling and pain. I also have muscle pain from Fibromyalgia, which historically has always coincided with my Crohn's flare-ups.

Has anyone found something that works to reduce joint swelling and pain? I can hardly walk, but don't have any other symptoms other than fatigue right now. Aleve has always worked well for me for other types of pain, but I know that's not good for my digestive system.
Driving me mad
by: Lou


Hi, i have the dreaded crohns and was diagnosed 7yrs ago, but its only been the last 2yrs that i have had joint trouble, as we speak, my hands are agony and as you say, simple tasks have become a problem, i feel like a 90yr old !!!
Joint Pain is not uncommon
by: Ida, Mississauga, On

My knees, wrist, legs depending on the day! Sometimes I can't even hold a cup of tea. I went to my doctor who sent me for a bone scan and averything came back clean. They told me that it is all part of having Crohn's. I thought the tummy bloating / pain, diareha, nausa and fever was it ... "NOT" Do what you can when you can !
I find that if I push myself when the joints hurt the pain last a bit longer.... normal run on the pain 10 to 18 hours and then starts to slow down. pain meds help only take them when I have to!
Keep your chin up! Woll check back in with again!
CD and joint pains
by: michelle

I have CD and have had immflamed feet for 8 months now i have not been able to walk and it keeps me awake at night, i went to see a specialist today, he gave me a steroid injection in my bum, now the pain has gone its like magic!!!!!
Joint Pain and Crohns
by: Connie S

I'm with you Barbie. I was diagnosed in Nov 07. Prior to then, I was working out with a personal trainer. I went to the gym six days a week. I am still not well - I am assuming I am still in a flare up. I am still looking for all these definitions for what I have. Anyway, I cannot work out anymore. I have tried walking during my lunch hour at work, then I am awake and in pain all night. I have read where exercise must be minimal during a flare. So, when does this flare end? Will I ever feel like I used to? I have only had this a few months and already I am tired of it!!!
Good luck to you.
joint pain
by: Kirsten

Barbie,
I found I had the same problem when I was on prednizone. Especially when I was coming on or off it because my body was craving it. My family doctor ended up just prescribing me Oxycotton for the pain so I didn't have to see another doctor.
Joint pain & Crohns
by: Shell

I was told by a GP that if you have been taking steroids and immuran you are likely to get joint pain. As far as not getting an appointment yet. you could ask your local gp to make enquiries for you or you can present your self at the hospital & be seen. Sometimes you can contact the rheumatologist clinc and ask what dort of time you are looking at and expliain that the pain is either worse or you are suffering more. Hope this helps
pain
by: Anonymous

i have the same problem . i took alot of tests,and came back normal. then i went to pain clinic and they told me its associated with chrohns. so i got three injections and they helped very little. im still in pain i feel i have some sort of arthritis. so you should try to see your dr call them again and complain. best of luck.

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Coping with the pain.

by Maree
(Townsville, Queensland, Australia )

I am 47 years old and have had my second colonoscopy in 18 months. I have three ulcers and have mild chron's. I am in the middle of a flare up, or what I presume to be a flare up. I am on steroids etc, but the pain is a my problem. On Friday last week I could not stand straight up the pain really had a good grip on me. I cannot take or rather stay away from codeine as it constipates me and as a newly diagnosed have read that constipation should be avoided. What kind of pain relievers are there on the market, just in time of severe pain. I haven't been to work for a couple of days now and it is definitely getting the better of me. Looking for direction.

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ibuprofen
by: Anonymous

Don't take ibuprofen if you have Crohn's. For most people, it can cause more bleeding. I've been seriously warned by many doctors of different specialties that I should not take any form of ibuprofen. Unfortunately, I haven't found pain meds that work for me, but I have severe Crohn's so maybe you will have more options open to you. All the best.
Coping with the pain
by: Anonymous

Millerspas, Librax and Tramacet is working for mee
Pain Relief
by: michelle

Hi

i have had chrons for 12 years now but not found many painkillers that help, i do use hot water bottle, hot baths and sometimes ipbrufin but can makes some people worse,also breathing exercises and relaxation, sorry thats all i can say.

Michelle
xx

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joint pain

by decota
(blacksburg,va.)

i've been taken remicade for about 4 years and its worked great.but latley i have been having real bad joint pain when it is time for my treatment.why?my doctor says its my chrons but i never had this before is there anyone having this same promblem

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Joint Pain
by: LeAnne

I am going through terrible joint pain especially in my lower back. I was diagnosed with CD in June '08 and had very little joint pain. I was taking Remicade but had to quit due to allergic reactions and loss of insurance. I have been taking Cimizia injections for a year now. The Cimzia has my CD under control with only mild flares from time to time but the joint pain has gotten really bad. I am hoping that I will see more relief when the weather warms up. Prednisone did not seem to be helping so my doctor changed my methotrexate dosage from 2 to 6 pills once a week. It seems nothing is helping much at this time. I just had my monthly Cimzia injections today. Hopefully, I will see some improvement. If not, I will be calling the doctor.
Remicade
by: smylync

I too had joint pain while on Remicade. When it was about time to receive another treatment my joints in my hands would become very painful. Push came to shove and I missed one of my Remicade treatments accidently and I had no adverse affects. Instead I have turned to acupuncture and the joint pain is now gone. I still take my daily meds for Crohn's but haven't had a Remicade treatment since October 09. I'm not saying acupuncture will work for everyone, but from the very first time I went I have more energy, less pain and I'm not complaining. :)
Joint Pain
by: Anonymous

Beware of Remicade. I was on Remicade shortly following my 1st resection for about a year. I started to get severe joint or muscle pain still not sure which it is along with swelling. Everyday it was somewhere else in my body. I never had any type of joint pain prior to using Remicade. My treatments started at 8 weeks then 6 then 4 until my doc took me off because he felt I was building antibodies to the Remicade. I am at 2yrs since using the Remicade and still with the pain on a a daily basis. I will never ever use Remicade or anything like it again. I tried the Humara right after the Remicade and had a severe alergic reaction to it. Good luck
crohn's and remicade
by: Rachele

The joint pain is a symptom of the crohn's disease as is psoriasis. The reason for your joint pain is because your body knows when the next remicade treatment is due. Your immune system and body have become accustomed to the remicade and the time frame of the remicade. You would have the joint pain at some point anyway with or without the remicade. The remicade stops the pain immediately after the next treatment and stays in control until the body senses the next treatment is due. Crohn's is an inflammatory disease and so is arthritis, hence the joint pain from the swelling. Remicade is used to treat athritis as well crohn's disease and psoriasis which is also an inflammatory disease. When the body has used up all of the remicade and it is time for the next treatment you will notice the flare up in your crohn's or your joint pain or your psoriasis. I have crohn's and have been on Remicade for 2 years and I too get joint pain when it is time for my next treatment. I know I would have the joint pain more often if not for the remicade.
crohn's and remicade
by: Rachele

The joint pain is a symptom of the crohn's disease as is psoriasis. The reason for your joint pain is because your body knows when the next remicade treatment is due. Your immune system and body have become accustomed to the remicade and the time frame of the remicade. You would have the joint pain at some point anyway with or without the remicade. The remicade stops the pain immediately after the next treatment and stays in control until the body senses the next treatment is due. Crohn's is an inflammatory disease and so is arthritis, hence the joint pain from the swelling. Remicade is used to treat athritis as well crohn's disease and psoriasis which is also an inflammatory disease. When the body has used up all of the remicade and it is time for the next treatment you will notice the flare up in your crohn's or your joint pain or your psoriasis. I have crohn's and have been on Remicade for 2 years and I too get joint pain when it is time for my next treatment. I know I would have the joint pain more often if not for the remicade.
Yes
by: Anonymous

My doctor tells me that when you have Crohns it causes joint degeneration and pains in your back. I have to get scans on my back all the time just to make sure it's not getting too bad. Good Luck. :)

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how long will pain last

I am currently in hospital being treated for crohns they r giving me hydrocortizone does anyone out there now when the pain will go away i am in agony and blocked

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Understanding the condition and adapting.. NEW
by: Annette

I completely agree with the previous comment. It's a scary time when you are in pain and have been diagnosed. No-one likes feeling ill and even the term Crohn's can strike fear into the most resiliant of people.

The good news is that, there will be breaks between the pain and times when the disease is less aggressive. It's only human to worry about the next bout of pain when you are currently suffering but, if you can develop the mind-set that tells you it won't always be bad, this will help you to adapt.

Ideally you need to have a good support network around you, family and friends or others who have been through and are going through the same things as you.

Crohn's affects people differently even though there are common symptoms, you may well react very differently to the next person in terms of treatment and medication. Just understand that you are not alone and that you will get through it.

Seek medical help, support or counseling, whatever you need to enable you to face the challenges ahead.The more you learn about Crohn's, the better prepared you will be for the future.
Good luck.
Lasting Pain
by: Kit

Look for the spaces between the pain and concentrate on them. Relax in to them, without getting anxious for the next bout of pain.
The steroid they are giving you is to remove the inflammation of the bowel.
The blockage is possibly due to the peristalsis (the muscular contraction and relaxation of the bowel, moving waste through your intestines) going into shock with the level of inflammation you currently have. This causes the bowel to 'spasm' or freeze.
I can only suggest here :)
While you are concentrating on the spaces of less discomfort :) breathe and relax and massage your stomach with castor oil, a lubricant and apparantly it helps with constipation :)
Drink copious amounts of water, with no added substance.
Walk around gently, a lot. This is what you would do with a horse that has colic.
The movement will help kick start the muscular action back in, hopefully :)
A very soft enema could help, preferably a mild coffee one. Unfortunately, if you are in hospital, they will only use the medical ointment or pessary. This works by stimulating the muscle in a chemical way. Not as good as a gentle enema.
Start taking fish oil capsules, as well as psyllium husks in a drink (metamucil for instance).
You need to lubricate your bowel massively. Keep massaging your stomach in a circular motion to gently stimulate it, as well as gently walking around.
But above all my friend, watch your mind. As you think, so shall you be.
You are not this 'disease'. It is your body that is currently suffering. Detatch yourself.
Move towards peaceful moments and people.
Move away from negative thoughts and people.
Accept everything and act.
Non-acceptance will create reaction within you and the physical problem will get worse :)
I wish you all the best.
Kit
creatingchange1@gmail.com

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pain with crohns and Dr's shuffle you to another Dr.

by melinda
(peru,indiana)

Are you in Remission? But have PAIN in your neck, shoulders,elbows,lower back, both hips, both knees , both ankles , and both feet? And no Dr. wants to help you? They just shuffle you off to another Dr.

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pain with crohn's NEW
by: Annette Young

Hello there,

Many people do not realise that Crohn's disease can have such far-reaching effects. Of course primarily people associate Crohn's with severe abdominal cramps, diarrhoea, feeling sick etc and of course this is typical, but Crohn's can also cause inflammation in the joints and even cause inflammation in the eyes. Many people complain of aching limbs and that their legs really hurt.

Unfortunately, diagnosis can be quite difficult because the symptoms may seem typical of an arthritic condition and doctors can falsely diagnose sometimes simply because the symptoms are very similar to the likes of rheumatoid arthritis.

Medication however can also cause severe side effects and it is worth checking with your doctor just to ensure that the medication you are on is not causing these extra pains in your limbs as a result.

I have spoken to many people who have literally despaired of going backwards and forwards to their doctors seeking additional help and not feeling that they are getting results, so you're not alone in your sense of frustration. Unfortunately, you do have to stand up for your rights and demand help sometimes.

Just because the main symptoms of Crohn's disease has apparently gone into remission, it does not mean that the other side effects will have. Until it is properly diagnosed or you ascertain whether your medication might be causing the problem it is difficult say for sure.

Crohn’s might be difficult to diagnose but there is a reason for this, many of the symptoms echo other conditions but you know how you feel and you have to ensure that your doctor understands this and treats you accordingly. Badgering the doctor is probably the last thing that you will feel like doing but you have to get results.

I hope you feel better soon.
Annette
pain with crohns and Dr's shuffle you to another Dr. NEW
by: Lydia D.


Excellent news and great that your consultant is supporting you.

I suggest that you look up your drug side-effects and interactions in the future at www.drugs.com or www.rxlist.com

Most medication causes gut problems and a modicum cause joint and muscle pain. I suggest that you hang on to the PIS (patient information sheet). I file them all, for future reference and as soon as I start getting any new symptoms I read through them all - www.drugs.com is somewhat more comprehensive though. Be aware that not all side-effects are listed anywhere.

I also refer you to Suzy Cohen's book "Drug Muggers". She writes about medication and how they deplete the body of nutrients. For example, statins deplete the body of coenzyme Q. You only need to be missing one nutrient for your metabolism to go off course.

I refer you also to the term "chemical cosh", which is a British term, but worth knowing about. It arises when doctors want to keep the patient out of their hair and involves the prescription of several very strong medications many of which are psychopharmaceuticals and can have rough side-effects.

All the best,

Lydia
Joint Pain NEW
by: Anna

I had Crohn's diagnosed 2 years ago, have been in hospital twice, lots of antibiotics, and steroids, for maintenance I was on Azathioprine. The pain in my joints was so sore at times I felt disabled. I was sent to Rheumy and was put onto Sulfasalazine, which definately helped. Recently I felt awful, bloated body, pain all over body but particularly in my left shoulder with pains shooting down my left arm. I got very worried and thought I was never like this before I got all this medication. So I started taking less and less azathioprine and at the end of a week I had stopped. Instead of 4 tablets of Sulfa, I reduced it to 2 and today I haven't had any. I am taking fish oil supplements, evening primrose supplements, probiotic vitamins and minerals, B12, and Slippery Elm tablets. I have been doing this for 4 weeks and feel great, my body feels normal, slight pain but I am walking normally and feel as if I have a lot of energy. I have also cut back on my food and have tried optimising my food which I found on the internet to try and make my meals more alkalising. I saw my consultant today as he made me a special appointment, after I phoned to say I had stopped taking my tablets. (also stopped my high cholesterol tablets and Citalopram antidepressant). All my blood tests were good and he said to keep doing what I'm doing and see what happens, he is going to book a colonoscopy for a few months time to check my insides. I am not advocating that others do the same, as everyone is different but I feel some of these medications cause joint pain like Aza. and if I continue to feel like this I can enjoy life as I like to play tennis, and like the other lady after a game of tennis I would be in a lot of pain for days. I am definately looking into diet to control my Chrons. My Chron's is in my colon only, near the ileum. I will let you know how I progress.
Pain and reasons NEW
by: Dannielle

I found out through my mri that the pain I was having is due to herniated disk in my neck, and lower lumbar region. I have three bad disk in neck and that causes neck pain and lock ups, shoulder pain and breast pain as well. I will be doing surgery next week and hope it gets better with therapy. I still have to eat right, have a better attitude and dont moan about my body issues and exercise more even when I dont wanna. ;)
I think that everyone who made there comments are correct and should think twice what your body actually is in need of before taking anything. Too much of anything could cause things as well. I know having crohns isnt easy and having pain sucks but I think it can be only a few things of reasons why you are in pain. Best the luck to you and croonies.
pain with crohns and Dr's shuffle you to another Dr. NEW
by: Lydia D.

Scotty, I recommend that you take a vitamin B complex for pregnant ladies, in addition to supplementing with vitamin C. The B and C vitamins are water-soluble. The upper limit is set by the amount of vitamin B6. In Australia this limit is 50 mg vitamin B6 per day. In the USA it is 100 mg. I would stick to the 300% RDA.

The fat-soluble vitamins (A, D, E, K) can be toxic in increased doses and care should be taken - stick to 100% RDA.

Mineral deficiencies can also cause pain in the joints and extremities.

http://ods.od.nih.gov/factsheets/list-VitaminsMinerals

If you are on Omeprazole or another proton pump inhibitor, you will not be able to absorb vitamin B12 and will need to take it sublingually or by injection or infusion. http://www.aafp.org/afp/2003/0301/p979.html

This patient describes vitamin B12 deficiency symptoms. http://www.dailymail.co.uk/health/article-1197979/Heartburn-pills-wrecked-life-How-antacids-effects.html

Also be aware that medication can cause joint pains. Look up the side effects of all your medication here: www.drugs.com www.rxlist.com

Lack of exercise and/or bad posture can contribute to back, hip, knee, etc., pains.

I can only guess at what may be happening to you, but suspect that it something listed above. I suggest that you keep a food/mood/symptom/medication diary to work out what is happening to you.

I suggest that you discuss being checked out for osteoporosis with your doctor. Anyone who is on steroids should be taking calcium and vitamin D prophylactically.

Steroids, cola, poor diet and lack of movement, etc., all eventually cause osteoporosis.
Teeth Pain NEW
by: Melinda

I had the same thing ask your Dr. for some Mary's Magic Mouthwash. They use it for Cancer Patients, because they have MORE PAIN than we do, SORRY to say that , but it is true.I use to work in Home Health Care and when I got done with MY job I was asked to deliver Meds.This mouthwash really WORKS! But I ended up going to a dental specialist. I had to get 2 root canal's and get my upper gum sliced open, to do a root canal that was NOT done and had a fake tooth, OH YES,I did have a knock out pill to take! I went back to work the next day.The inside of my body is in Remission. BUT, it is effecting ALL of my joints, NO shot in my back is going to help me. Reason is PAIN moves around, my back and hips could be fine for a day or to, during that time ,my neck,shoulders,elbows hurting very bad.Other time'S ENTIRE BODY HURTS. I WISH YOU WELL. Melinda
Joint and teeth pain NEW
by: Scotty

I was diagnosed with Crohn's 12 months ago but the joint pain is totally debilitating, I have pain in my neck, shoulders, wrists, fingers, knees, heels and now my teeth hurt, there is nothing wrong with them but they have become extremely sensitive. I have been trying everythimg to stop the pain. My son is a Doctor but the impression I get from all Doctors is you just have to put up with it or take pain killers but don't moan. I'm going to see a rheumatologist in a months time and I am going to start taking vitamin B12 to see if that helps. I play tennis but if I do manage to play I can hardly walk for the next week. If anyone has managed to rid themselves of the joint pain I would love to hear from them as I am very active but I now feel like a woman in my 80s, HELP.

pain with crohns and Dr's shuffle you to another Dr. NEW
by: Lydia D.


I get some of these pains when my vitamin B12 infusion is due. Try taking sublingual B12 or a daily vitamin B-complex tablet (for pregnant ladies).

You might have got depleted in B12 during your last flare. This is the only water-soluble vitamin that is stored in any great amount in the liver (1-2 years worth).

Long-term medication can interfer with the uptake of and result in the depletion of various micronutrients in the body. Proton pump inhibitors, such as Omeprazole, can result in vitamin B12 deficiency and osteoporosis. Nerve damage caused by long-term vitamin B12 deficiency is irreversible.

http://www.dailymail.co.uk/health/article-1395028/How-medicine-draining-vital-nutrients-body.html

http://www.dailymail.co.uk/health/article-1197979/Heartburn-pills-wrecked-life-How-antacids-effects.html

It sounds to me as though you need a referral to a physiotherapist.

IBD patients have a high risk of osteoporosis and the associated fractures. Some of your pain might be due to osteoporosis and it would be worth discussing a bone density scan to check this out, if you haven't already had it done: http://www.webmd.com/osteoporosis/guide/osteoporosis-pain
pain with crohns and Dr's shuffle you to another Dr. NEW
by: Melinda

I have all ready went through the MRI, and there was NOTHING FOUND. To that Dr. there was NOTHING WRONG with me.If there was any way possible I would go to Chicago,IL. To the Mayo Clinic, they REALLY know this disease! I also have spots in my lungs.I have had a small one on my left side but now I have a couple on my right side.The one on the left has gotten bigger since a year ago. I go back and get another test done to see if the ones on my right side have gotten bigger. If so, they will do a biopsy. Everything that is wrong with me is from the Disease. I just can not find a Dr.that KNOWS EVERYTHING about Crohns, all I am is just a piece of lost paper blowing around in the wind. Thank You for writing, Please keep in touch. Everyone with this disease I am really concerned about it is a Bad Disease. Thank You and GOD BLESS, Melinda
Yes This is me too NEW
by: Dannielle

I can't believe there is some one else out there that has same issues. At the moment I have had pain neck to where lock and stiffness happens and Im not mobile at all. It is very frustrating and doctors just say I have fibromalgia which isnt the case. I have severe neck, shoulders, whole back area, hips, knees, ankles and feet issues as well. I am seeing a spine doctor and will go do mri of cervical spine and see where this takes me. I have tried everything and my muscles are always tight and stiff and i go to therapy but never am I at ease well fully.

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Joint Pain with Crohn.s

by connie
(Nova Scotia Canada)

DOES THE PAIN EVER STOP,DOES ANYONE SUFFER WITH JOINT PAIN FROM CROHN'S ?

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leg pain and crohns

by annabel
(nw london)

ive been told i have either bad IBS or mild crohns....am being treated for IBS with various pills....i have a 7cm patch of inflamed bowel on my lower right side and i now get funny pains in my left leg too.it feels like a nerve is being squished?!!? my leg feels wobbly ?!?!

i have been discharged from my gastro clinic but think i may need to get referred again?!?! is the leg issue a common thing or completely unrelated??!?! my painful side is getiing worse again too?!?!?

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possibly NEW
by: Kat

During one of my flare ups of Crohns I had severe leg pains in what felt like the joint between my leg and pelvis. It started of feeling like a pulled muscle/tendon but as the months progressed it became sharper however I dismissed it as growing pains as none of my flares had ever had that symptom before. One morning I woke up in extreme pain, I could not move my lower torso let alone my leg. I had to be carried into hospital. Turned out my usual flared area had been rubbing against my psoas muscle and was creating the early stages of an abcess.
So if you havent been diagnosed yet I suggest you find a gastrointerologist prepared to listen to your sympotms. Demand a colonoscopy with included biopsy, which is usually a common way to determine Crohns. Inflammation somtimes also shows up in blood test of the CRP and ESR.
Keep trying until you can get a solid diagnosis.
Additional Symptoms
by: Lydia D

Sorry Kelly that I didn't pick up your post earlier. (Lydia D aka veteran Crohn's patient)

My symptoms were extreme tiredness and exhaustion (inflammation, dehydration and malnutrition?), chronic diarrhoea and intermittent deep seated abdominal pains. In the end the pain was chronic but only 4-5 on the comparative pain scale (0-10). I was diagnosed as psychosomatic by the doctors that I consulted and because of the subsequent delay in diagnosis ended up losing my colon.

Inflammation doesn't always show up in blood tests.

I can't say whether you have Crohn's or not because there are hundreds of other diseases that cause similar symptoms.

If you already had a Crohn's diagnosis then I would guess on the basis of your symptoms as you described you could have a stricture or stenosis or a conglomerate tumour of the intestine in addition to very active Crohn's. However, you have not been diagnosed.

I had so much inflammation that my entire intestine stuck together and I ended up with a conglomerate tumour of the small intestine. Because of the back pressure intestinal peristalsis was restricted and I had to puree all my food to avoid blockages. The GERD was out of control because of the low passage of food and the increased back pressure. In the end I was operated on again (7th OP), they removed the tumour, which contained Crohn's'd tissue. It took them over 5 hours to to adhesiolysis www.adhesions.org

Crohn's is a relapsing and remitting disease, so if it is properly medically managed then one should not have diarrhoea all the time.

I suggest that you keep a food, mood and symptom patient diary and use this as the basis for discussion with your (new) doctors. https://www.crohns-disease-and-stress.com/journal.html

You could use the CDAI http://www.ibdjohn.com/cdai/

Describe your stools using the Bristol Stool Scale http://en.wikipedia.org/wiki/Bristol_Stool_Scale

Use the comparative pain scale http://www.tipna.org/info/documents/ComparativePainScale.htm

The sensitivity to fatty foods might indicate that the terminal ileum is also involved - this is where the bile is reabsorbed together with a large amount of the fat-soluble vitamins (A, D, E, K) and vitamin B12. Try pureeing your food and avoid anything that is constipating or could cause blockages - bananas, leafy greens, red meat, skins, seeds, pips, etc.

Leg pains may indicate vitamin deficiencies, referred pain from the abdomen as a result of inflamed intestine pressing against nerves.

You may be deficient in vitamins B12 and the fat-soluble vitamins.

I am not a doctor and you do need to consult one as a matter of urgency because you have a lot going on. Put together a tabulated and chronological account of what has happened to you: Date, doctor consulted, symptoms/diagnosis/treatment.
"additional symptoms cont'd"
by: Kelly

Sorry- the post titled "additional symptoms" was from me, Kelly! Sorry i am not any good at this forum thing. I've never done this before but would really like to hear any more thoughts!
additional symptoms...
by: Anonymous

Thank you so much for your thoughts. Being a veteren of Crohns, can you please describe some of the symptoms you started with leading into your diagnosis? I have had colonoscopy, endoscopy, biopsies of tissues, etc during that procedure. Blood tests, stool tests, ultrasound of pelvis and abdomen. All negative. Last Feb i started having severe diarrhea then cut out fatty/greasy foods and it went away. Then numerous other symptoms came up. Currently I have any one of these symptoms on any given day, sometimes they are worse than other times and seem to have no rhyme or reason. Severe bloating (every day constantly for the past month straight), pains ALL over my entire mid-section, GERD, severe cramping,spasms all over my entire mid-section, loss of weight, for awhile i felt "sick" altho didn't get a fever, i would sometimes have chills and pains right before having a bm and afterwards just feel totally wiped out even if it was a "normal" bm, pains also are extremely low down on both the right and left sides (altho i get pains everywhere sometimes), irregular bms, I'll start to have a bm and not be able to get it all out then have to rush to the bathroom 5 min later to get more out suddenly, extreme sensitivity to pressure (I can't even button my pants on some days due to the pain!) eating a few bites of food and feeling totally full, neaseas, a lump in my throat (altho i can still easily swallow).. symtpoms seem to be all the way from my chest down to the leg area I had described in my other post. The leg pains are the newest symptoms. Do you have diarrhea all the time with crohns or is it just that you have irregular bms? Do you think this is progressing into crohns? I will see my dr on tues and will go to stanford if i have to, but just wonder what someone with crohns would say about my symptoms.. (sorry this is so long!)
leg pain and crohns
by: Anonymous

Sorry, I am not the authoress, but I just wanted to say that if your doctors haven't found anything then you are seeing the wrong doctors.

The bilateral leg pains are particularly worrisome. I am only a veteran Crohn's patient, but if I were a doctor I would want to eliminate the following:

1) Intestinal blockage due to too high dietary fibre. Eat low fibre, non-wind producing foods (Google this subject). Do not drink sodas or any fizzy drinks and do not eat sweets or chocolate.

2) Possibility of pelvic thrombosis - most blood clots start life in either the legs or the pelvis and then travel to the lungs (pulmonary embolism), heart (ischaemic heart attack) or head (ischaemic stroke).

3) Possibility of abdominal tumours/cysts/adhesions - can lead to fluid retention and pain radiating into the legs. Abdominal tumours can lead to swelling in the legs.

4) Heart failure - can lead to fluid retention in the legs.

5) Wheat intolerance, Coeliac disease, lactose/fructose/sucrose/maltose intolerance, food allergies, etc.

Just one of the following: not moving around, overweight, smoking, bad diet, the contraceptive pill, medication or any street drug, Crohn's disease or ulcerative colitis, other disease. Just one of these can make you susceptible to thrombosis.

I would start doing your own research, change your lifestyle accordingly and find some new doctors if necessary.

Lydia D.
leg pains too!
by: Kelly

I am currently being tested for crohns or something along those lines but so far tests are coming up negative. A new symptom I have developed is a type of leg pain too! Mine doesn't feel like a joint necessarily but it starts at the tendon that is literally down on each side of my croch. (sorry, not really proper medical wording I'm sure!) It is usually on the right side more than the left and sometimes it spreads to more of my leg around that area too. The pain will last for days and then go away a bit, then come back again for hours, etc. I am also having constant bloating for the past month. I have also had pains like you described and many other symptoms. Where is your leg pain at? Does this sound like something similar?
Leg pain and crohn's
by: Lydia D

The pains in your right (?) side may be due to food blockages and you should keep an eye on what you eat. Avoid anything with seeds, skins, pips or stringy fibres (citrus, leafy greens). Avoid all carbonated and sweet especially high fructose drinks. Try pureeing your food for a few days to see whether that has a difference.

There are several types of Crohn's disease: fistulating, stenosing (closing of length of intestine), stricturing (closing of v. short length of intestine), smouldering, etc. Pain could indicate stenosing of the 7 cm inflamed small? intestine due to increased inflammation. It does not sound as though the current therapy is adequate and you should go and see your doctor.

The pain in your left leg could be due to a trapped nerve if your posture has been strange due to your pain. If it had been a general leg pain I would have suggested B12 deficiency, but your pain is very localised.

Please let us know how it all works out.

Lydia D.

Arthritis-like pain from Crohns
by: Peter Bray

Yes...Crohns can also arrive with inflammation in the joints, elbows, feet, etc--do a websearch, "arthritis from Crohns"--see what others do--Daughter Cathy is trying an enzyme her other found online---

PetrBray@AOL.com

Benicia, CA

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Chronic Pain

by Karin
(Edmonton, AB, CANADA)

Hi all!

I just stumbled onto this site while I was looking at Chrohn's info. I am at home today because of abdominal pain and absolute exhaustion. Most days, I feel fine. I was diagnosed 2 years ago, and am currently not on meds. However, I am wondering if I should get on meds. I am always exhausted, and I go from feeling great to dropping like a fly in seconds. Yesterday, my husband and I went Xmas shopping, and 1/2 hour into the trip, I drooped! I had to go sit down and go home to bed. When I got up this morning, I look like I am 6 months pregnant, my side aches and I am tired...so tired! What can start this? How can I keep my energy up? It is starting to affect my life with kids and husband.....

Thanks for letting me vent, and I'd love some feedback.

KARIN

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Chronic Pain NEW
by: Annette Young

Hello there,

Thank you for your post. I'm sorry to hear that you are struggling to cope with such fatigue and abdominal pains at the moment.

I do feel that you should go to your doctor so that they can keep an eye on your Crohn's for you. Medication may well alleviate some of the pain and symptoms and although it can be a bit of trial and error to get the right medication, I think going it alone is a bit dangerous.

Crohn's disease is such an aggressive one and it can literally take over your life. One of the main symptoms of Crohn's disease is fatigue and it can completely wipe you out. The best thing that you can do is to plan a more holistic approach to taking back your health. First of all listen to your body. If you're overdoing it then rest. Try to get as much sleep as you can so that your body can start to heal.

I come from a natural health background and I do advise using meditation. It really can give your whole system a boost as well as reducing the effects of anxieties and stress new and it can help promote deep sleep too. It may sound a bit new age but seriously, it works.

I attach a link for foods that work well with Crohn's disease in case your diet is a potential trigger.

http://www.health.com/health/gallery/0,,20559874,00.html

You can also take a look at this link as well.

http://www.listentoyourgut.com/symptoms/14/crohn-s-disease.html

Eliminate stress as much as possible from your life because this can have a huge negative impact on your Crohn's disease. If you have any particular problems, it's a good idea to try to sort them out as soon as possible. Eat sensibly and healthily and try to ensure that you have all of the appropriate vitamins and minerals too.

I hope this helps,
Do let is know how you're getting on

Annette

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node pain

by John
(IN)

Has anyone experienced lymph node pain in the neck, and in the back of the head and neck, and around the collar bone? In addtion sore aching muscles. Ive had the joint pain before, but never sore muscles. Seems to be a new manifistation. Any feed back would be much appriciated. Thank You

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Help for Crohn's
by: Anonymous

Vitamin D3 deficiency is a major factor for Crohn's.
Try like myself taking the above dosage, but always
with a spoon of Flax or Fish oil, to optimize absorption. Vitamin D will give you energy. Eliminate sugars and replace with Honey
in everything! Honey is a mono-saccharides, and easily
digested by Crohn's afflicted bowels, therefore less
bacterial growth that causes inflammation.
Try also take 1/2 tspn of Manuka Honey, on empty stomach 1 hour before a meal. It heals any wound inside and outside the body!!! I tried it when I had
pain from Crohn's attack, and the pain was gone.($12 a small jar) but lasts for a long time.
SUGARS- IN ANY FORM, IS EXTREMELY HARMFUL TO THE
INFLAMED BOWELS OF CROHN'S SUFFERERS.
Try to avoid smoking, and coffee only once a day or every other day!
Instead of coffee, to be alert and awake, put a dash or two of CAYENNE PEPPER
into 1/2 cup of warm water, or into salads, soups, any dishes. It does
wonders! It also takes pain away!!!

You will not regret implementing the above suggestions, as you are getting
them from a Crohn's sufferer like yourself, who is mature in years, and with
experience, and who has tried everything.
I have many more helpful suggestions for emergency situations.
If you'd like to get the information, you can e-mail me: blueiris0000@yahoo.com

If you don't try, you'll never know...


Check with your G.P. your thyroid level,
and hemoglobin level as well.
You might need Iron pill (better from vegetable
source), www.vitacost.com sells them cheaply - Item #CTL4026594. Take 3 a day with vitamin C - 500-1000 mg, for 3 months.
Medication
by: radhdmom

I have had Crohns since 1995 and had one surgery. I have fought with flare-ups for the last 9yrs. Are you on any immunosuppressants? (remicaid, humara, cimzia, immuran) I have been on all of them and because they suppress your immune system you are susceptible to infections and flu's. I know last time I had a severe flare-up I ended up with Pancreatitis and my kidneys started shutting down. I have had instances where my lymph nodes have swollen up and I called my Dr and he suspended my medication. I hope this helps, let me know if you have any questions. Good luck!
limp node pain
by: Anonymous

yes my son is 9 now but was born with crohns and he has has swollen limp nodes in neck and a swollen thymus in the chest .he also has got a hole in his sectum' thats' in your nose the grissle part. they cant do nothing about that until he is older. but his remicade treatments every 2 months really help him. please email me if you would like to know more thanks mrs cable. johnandtonda1@yahoo.com
Node pain
by: Lizzie

Hi i am sorry to say the pains you are getting is quite normal chrons affects everywhere and i have had our good old frien for the past 12 years with little remision, i have been recently diagnosed with fibromalgia and from what i have read there is quite a few chrons patients with this condition, please go and see your contsultant and ask to be refered.
let me know how you get on xx

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what do people with Crohn's take for pain during flare ups?

by Char
(Elmira Ontario Canada)

I have been on Remicade for about a year now, every 8 weeks I go for treatment. Which has been amazing, except by the 7 week I start not feeling well, I am unable to get treatment during the 7 weeks do the lack of funding. So my question is "What do people with Crohn's take for pain during a flare up?

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Pain
by: Anonymous

When the pain is serious I use Oxycontin
what to take for crohns pain
by: Anonymous

i have had crohns for 8 years and find co-codamol very effective for pain relief and reducing time spent in bathroom
Remicade
by: Anonymous

When I was on Remicade, my joints were hurting like crazy and I used to take Tyelnols (not a lot but once or twice). And if it is just a flare up, I did not take anything, I just waited for my next treatment.

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Pain with Crohns?

by Brooke
(Auburn, AL)

I was diagnosed almost 4 years ago with Crohns. I just recently started having sharp pains that come and go in the same area of my stomach where all this started when I was diagnosed. Could this be my crohns flaring up?
Just not sure because the pain does come and go but if I remember correctly the pain was like that back when.

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Pain with Crohns? NEW
by: Annette Young

Hi there,

Sorry to hear that you are getting pains again, you are right in that Crohn's symptoms do seem to come and go and sometimes without reason.

It could be that you have done something that will trigger off an attack even if you are not aware of it. Have you changed your diet at all recently? Tried something that you haven't had for some time perhaps? It makes sense that food is one of the first areas to look at because your digestive system has to break the food down and absorb those nutrients and if there is anything within the food that your system find hard to digests, well, there's your flare-up.

Other triggers include smoking and alcohol and probably not surprisingly, stress. I would suggest you think about the environmental conditions at that time, were you stressed at work? Did you have family problems? anything that can make you worried can trigger off some sort of reaction. If you had a cigarette or alcohol, these can really give you an adverse reaction.

As I said before sometimes there also seems to be no reason for it, but I would certainly keep an eye on your health to monitor changes and if the symptoms get worse or do not seem to alleviate, then I would suggest you go back to the hospital to ask for further checks. Just in case something is occurring inside.

I hope this helps?

Do let us know how you get on.

Best wishes,
Annette

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Breast and shoulder pain

by Louise
(France)

I had a colonoscopy last week (not very good results, another operation I think). But a couple of days later I seem to be having a pain when I swallow in my shoulder and left breast.
I can't believe it's anything to do with the crohns but can anyone tell me if they have suffered with this. I am hoping it is linked to the crohns, otherwise I have to try and find the time to see a doctor about this as well!

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Every day and week same crohns pain different day

by Denise Coker
(Winfield Al)

One day I may have moderate symptoms, cause have been in pain wi this for 20 years. The next day I'm on so much pain it last for days. I'm at a sever breaking point. To wear I done even want to eat pudding for the fear of how bad it hurts. Does everyone experience this? Food I'd the enimy no matter how good it looks it not worth th pain. I have lost so much weight in my face I can't believe it's me.

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Every day and week NEW
by: Annette Young

Hello,
I am sorry to read that you have so much pain and discomfort after eating. You are not alone. Many people dread the thought of food because they find it difficult to digest foods easily and suffer any number of symptoms thereafter.

When you are in so much pain, day in and day out, it can be easy to feel that you are the only one but when you consider that about half a million people in the US alone suffer from some type of IBD, most of them will have experienced similar to you- it doesn't make it go away but it gives you some scale of the problem. Getting that awful cramping feeling is sickening and it might be worth you trying some relaxation techniques to help ease the cramps.

Of course, when you eat foods that are difficult to digest, then you will experience abdominal pain, so in the first instance, take your food back to basics- stews, soups, pureed foods etc. Be kind to your digestive tract. Once you have become used to eating this type of diet, try to learn some basic relaxation techniques and mentally work your way through your body eliminating tension. When you are in pain, you are probably holding a lot of tension all over. These techniques can help you to feel a lot better in yourself.

This is not a cure however but it can help.

Essentially, your digestive tract becomes inflamed, ulcerated and the walls can start to thicken and swell up over time. This thickening ca slow down the movement of the food you eat and this obviously will cause pain. Eventually, you could end up with obstructions there. Having food such as soup makes it much easier to pass through but do make sure you are getting enough nutrients. You need to keep your body as healthy as possible so that you stay strong.

Often, Crohn's can go into remission seemingly without reason, and I hope that you get some respite from the condition. Do be aware that you will always have crohn's but it is learning to live with it that is the trick.

Relaxation and meditation can help to take away the stress and anxiousness regarding every day life or the condition itself. As I said it's not a cure-all, but if you use it alongside other aids, then you may feel a difference.
Fingers crossed.

I attach a link to a website that might be of interest.
http://www.healthline.com/health-slideshow/crohns-disease-power-foods

Best wishes,
Annette



Every day and week same crohns pain different day NEW
by: Lydia D.

I would encourage you to keep a patient food/mood/symptoms/medication diary and after a few weeks discuss it with your gastroenterologist. I refer you to the following:

http://beyondibd.com/blog/treatment/how-keeping-a-diary-can-improve-your-health/

Crohn's daily activity index
http://www.ibdjohn.com/cdai/

The Bristol Stool Scale http://en.wikipedia.org/wiki/Bristol_Stool_Scale

The Comparative Pain Scale: http://www.tipna.org/info/documents/ComparativePainScale.htm

I would also add that vitamin and mineral deficiencies can exacerbate the pains. I suggest that you discuss with your doctor the merits of taking a daily vitamin B-complex tablet (neurones, pain,...), fish oil capsules (neurones, skin, hair, eyes, ...), magnesium (bones), iron, zinc (immune system, hair, nails, ...), etc.

If you take zinc then you should buy yourself a Sabona medical grade non-magnetic copper bangle to wear all the time. Supplementation with zinc prevents the uptake of copper in the body. Copper deficiency leads to joint pain. http://www.natural-health-information-centre.com/copper.html

Vitamin and Mineral Fact Sheets
http://ods.od.nih.gov/factsheets/list-VitaminsMinerals/

If you have lost so much weight, it might be a very good idea to sip Boost or Ensure throughout the day. There is not going to be any wound healing if you are malnourished.
pain with food NEW
by: Anonymous

unfortunately with chrons food is the enemy as long as you drink plenty of fluids. eat little and often as i have been told over the years that sometimes seems to work for me although everyone is different. if you eat a full meal you will feel pain, so just eat very small amounts.

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Crohns disease and stomach pain

Hi there my partner was ill 3 years ago, he lost weight had constant diarrhoea and sickness and got the eretherma rash all on his legs. It took 6 months for the doctors to advise he had crohns disease. They put him on steroids then weaned him off them and put him on pentasa and he has been fine on that for 3 years until now. He has been getting really bad stomach ache at first it was after food then drink and now it can come anytime. Can anybody help or give any suggestions???

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Pain around belly button

by Anthony
(Logansport indiana)

I have had pain around belly button and were my appendix is whent to er and they were 100% Shure it was my appendix so had a cat scan and it came back negitive for appendix, so what could it be?

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Pain around belly button NEW
by: Lydia D.

You don't give us much to go on, but I will give it a try.

1) If you have had past trauma, i.e. a fall, someone hit you in the stomach, etc., you might have developed scar tissue inside - www.adhesions.org These can cause a lot of pain.

2) I agree that a hernia could be another possibility. Lots of pain there.

3) Have you been doing too much sport? Even skate boarding or twisting when playing tennis or another sport might cause a ripped muscle and lots of pain. I know this because I ripped a muscle in my thigh when I was weight training. Muscles take months and months to heal whereas bones take around 6 weeks to heal.

4) If the pain becomes excruciating and you have fever or feel delirious/dizzy/disoriented then you might have peritonitis and this is serious because it can progress to sepsis. This would be an emergency situation and you would need immediate hospitalisation and intravenous antibiotics.

5) Street drugs and injecting oneself can cause clots and infections amongst other things.

6) Loads of other possibilities. I had a section of intestine start to die on me due to Crohn's inflammation and adhesions strangling the intestine and its blood supply.

I suggest that you keep a patient diary to record date, time, level of pain (scale 0 to 10), temperature http://en.wikipedia.org/wiki/Fever, what you were doing at the time (sitting, standing, bending down, kneeling, running, etc). This will make it easier to communicate with the doctors. You don't have to write an epic, just bullet points and key words.

Comparative pain scale: http://www.tipna.org/info/documents/ComparativePainScale.htm

In your diary include any other symptom, spot, boil, change in mood, etc. These may or may not be associated, but they might lead to a quick diagnosis. Try also to include any changes/damage to your health that may have occurred during the preceding weeks/months. http://www.anapsid.org/cnd/diagnosis/canwetalk.html

If it persists then they may decide to look at your insides laparoscopically (camera on a stick). This might be the only way to get a diagnosis because it can be nigh impossible to interpret medical images in some 40% of cases. Things like adhesions and low grade infections can not be picked up on x-rays, etc. CT is a form of x-ray imaging. MRI (magnetic resonance imaging) is far more reliable, but about 8-10 times more expensive than CT.

Whatever you do, don't let them fob you off with with the old "it's psychosomatic!" This is used by doctors who have reached the outer limits of their competence. I met up with a neurologist who did two tests on me and then said my facial pain was psychosomatic when they came up negative. I was subsequently diagnosed with TMJD (temperomandibular joint disorder) by the orthodontist.

Good luck and don't give up until you have a diagnosis - it could, however, take years.

Lydia D.
Belly Button Pain NEW
by: Craig

Hi
I sometimes get pain around my belly button and it almost feels like a hernia , like a solid lump. I had a right hemi-colectomy following severe pain around my lower back and appendix area. A CT scan showed severe infection and my appendix had ulcerated and attached itself to my bowel following my surgery I was diagnosed with
Crohn's. I think my belly button pain is most likely some spasms around my scar tissue. I know how hard it is when tests come back negative and all you want is an answer.CT scans are a very good diagnostic tool and pick up the slightest problem, so your results are good in the sense that there is nothing serious that has been found. Hernias can originate from the belly button ( umbilical hernias I think) this is normally accompanied by pain when lifting or straining. I am sure the CT would have picked this up, and it is normally a lump which is fairly pronounced. Could you have strained a muscle? I would go back to your GP and see what further tests could be done and likely causes of the pain. Good luck

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In the morning daily stomach pain like I've been holding it ouch!!!!

by Albert
(Germany)

Ok. So what do I do about this... Lately I cramp up in the middle of the night like I have to go to the restroom, but I don't. The pain escalates throughout the night and I wake up hurting SO BAD! It feels like a combination of "holding it in" pains and "I've been hit in the stomach repeatedly" pains. The pains are from left to right encompassing my entire belly. When I go, only a little comes out at a time, all wet. When I walk around it sounds and feels like I am carrying a big bag of water, you can actually here the swooshing. It's so bad that I wish god would just give me another body. What can I do to help this pain go away??? Any help or comments would be appreciated.

Amsdowns @ gmail.com

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pain management for crohns

how to manage pain in and around rectal area

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How to deal with the pain that comes along with the stress?

by Tiff
(San Antonio)

I know the people that make my stress level higher and this chrohn's painful...what do i do?

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Crohn's and Constant Pain

by Julia
(Laurel, MD)

I am new to this site, but certainly not new to experiencing the dubious joys of having Crohn's Disease. I was diagnosed in 1987, although after going back through my history as a teenager, I know I had the disease longer than that.

I, too, have constant pain. I live with it on a daily basis and take pain medication under the supervision of a pain specialist every day. I greatly dislike having to depend on this medication, but to live a half-decent life, the medication is a must. I tried all of the medications given for Crohn's but they either don't work, I have bad side effect to the meds., or the medication works for awhile and then stops. Right now, I'm on no Crohn's medication. Just the pain medication, Prozac for the debilitating depression and Xanax for the anxiety and panic attacks I suffer.

I've gone through so many tests with the results saying there should be no reason for all of the pain I'm experiencing. That makes no sense to me at all and sometimes causes me to lash out at the doctors who are just trying to help. It's a vicious circle.

Unfortunately, I am once again going through the agony of a Crohn's flair-up and will be going back to my GI next week. I do not look forward at all to the tests again; they will also be looking to see if the Crohn's has spread to my esophogus(?).

It's very hard to stay positive in the face of having such a debilitating disease. It's hard for family and friends to understand the agonizing pain and the complete exhaustion that comes with these attacks.

I'm taking each day as it comes. Until they find a more effective medication for this disease or a cure, it's all we can really do. I try to think as positively as possible.

Living with this disease is barely living at all. I have held down a job through all of these years of suffering, but the stress, pain and uncertainty has taken its toll. I will now begin the merry-go-round of trying to get SSI.

I wish everyone permanent remission and a cure to this insidious disease.
Julia

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chest pain with crohns

by teresa
(b.c.)

Just lately every time i have a bowel movment ( when i push) i get wicked chest pains in the middle of my chest. Do any of you have the same deal?? If so do you know what it is??I am trying to get ahhold of my dr.( Yea good luck with that) so in the mean time what do i do?????

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Off And On Pains

by Stefanie
(MN)

For the past 3-4 days, I've have off an on stomach pains around and under my belly button. I was diagnosed with Crohn's Disease 5 years ago and haven't had any complications since then. I have no other symptoms besides the cramping/aches. Any ideas what could be going on? Is it Crohn's or something else?? Thanks!!

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Off and On Pains NEW
by: Annette Young

Hello there,

Thank you for your post. As much as I hate to be the bearer of bad news, it is important to realise that flare-ups can occur at any point and sometimes without warning.

The fact that you were diagnosed with Crohn's disease five years ago is an indicator that you were always likely to have some sort of flare-up and I think you've been very lucky up until now that you have little symptoms.

It could be intestinal gas of course but I would always suggest that you go and seek medical advice just in case the Crohn's is getting worse, or indeed if there is any other problem potentially there.

It is a good idea for you to make note of the foods and drinks that you have been having recently because some of these could have acted as a trigger. Keeping a food journal is always a good idea because you will forget otherwise and actually it is very important to be able to detect specific food types that can irritate you on an individual level. If you have been eating a lot of dairy products of late, you may find that this is an irritation and it is possible that there is a lactose intolerance present.

Equally, if you've been eating spicy foods this can trigger a reaction and drinking alcohol or smoking are other potential causes.

People often forget that stress can also make the Crohn's worse and so it is important to live as stable and as calm a lifestyle as possible so that your health remains constant. It can be a real shock to the system to suddenly experience a flare-up and you may be lucky in that once it settles, you do not experience another flare-up for a long time. But don't take chances with your health, if it is not get better soon, do seek medical advice.

I hope this helps
Annette
Stomach pain intermittatn
by: Della



If you are like me, I have vague pain in my belly occasionally and wonder if I'm coming out of remission. It can be gas, diverticuli or constipation also. Before I was diagnosed with Crohns, I had left lateral belly pain that worsened over four days and was diagnosed with diverticulitis. Before last Christmas I began having pain in the same area. I could place a finger on the spots that were tender. I ended up in the hospital with 103 fever and an enlarged spleen. Please followup with your doctor if your pain persists. Take care.
Della
gas
by: Tod

I found that one common denominator with all CD patients is plain old gas pains. These can be very, very painful. especially in the area that you are getting yours. What tipped me off is that you said they were on and off, which leads me to believe that they are not constant(that is usually a good thing).

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Chrons and constant pain

by jaime smith
(Cali)

I was just curious what other ppl with chrons do about the pain? i was diaognosed withchrons in jan 201o nd since then habve spent an accumalated 3 months inthe hospital....everyday of my life is hard. I have constant pain, constant diearhea and just recently strated to vomint randomly. i have tried every pain medicine known to man and was doing good taking norco 10/325 but my husband has recently lost his job which means no more insurance. I have been taking pain meds feveryday for over a year and now since i had to stop takiing them becuase of no insurance i am sick from what im guessing are withdrawls...anyone have any suggestions on what would work for the pain of the chrons and help me with the withdrawls. I have already applied for state insurance but we all know that is a process.....just looking for some suggestions

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Pain Management NEW
by: Annette Young

Hello Jaime,

I am so sorry to hear that you are experiencing so much pain. Crohn’s is a terrible disease and it can quite literally seem as if your life and health is being ripped apart at the seams. I hope by the time you receive this that your circumstances are a little better and you can seek medical assistance again.

Did you know that stress can act as a trigger and cause crohn’s flare-ups ? I would imagine that the fear of being ill and the contact pressure of being in pain would be a substantial trigger enough but with your husband being out of work, these anxieties could be taken to a whole new level.

It’s important that you take a whole lifestyle approach to managing the disease. There is no cure as you probably know and although drugs can control the disease, they do not cure.

Eating although essential, could cause your symptoms to feel worse. Some people find fasting to be really useful and if you feel that the pain is so bad and that digestion is so difficult, it might be worth trying it. This does not work for everyone but is worth a try for a few hours at least. Then ascertain if the pain is better or worse. It’s important to keep taking fluids i.e. plain water and after your fast, perhaps pureed vegetables or soups would be best.

Deep breathing has proven to be beneficial for some. Try to focus just on the in-breath, counting it in for 4 and then releasing to a count of 4. Try to blot everything else out of your mind and to relax your body as you breathe out. You could also try meditation and creative visualization. Try healing visualizations, lovely colors moving in and out of your body or you could try picturing yourself in a natural scene, in a hammock on a beach – anything that appeals.

There is no substitute for medical assistance but trying to eradicate stress and eating foods that are nourishing and yet have a minimal impact on the digestive system is a good idea. Remember that other people are experiencing the same problems and you are not alone, even if it might seem that way.

If anyone has any suggestions for pain management, why not write in and share?

Annette Young
Sorry to say...
by: Anonymous22UK

Sorry to say but marijuana seems to be the best thing if you have no insurance. Im in England and get as much morphine as i need from the NHS but had a spell smoking weed as well,whilst not as strong as morphine it certainly helped. Im so sorry to here your in pain,its wrong.
cannabis
by: Ryan

For me marijuana is really the only thing that works. Unless I'm actually in the hospital from a flare up I use marijuana because any opiate pain killers cause too many side effects and stomach problems. It really helps with most Crohn's symptoms like loss of appetite(duh, i know) cramping and digestion. I am very sick now and am about to have surgery #5. I used marijuana less than 24hrs before my last surgery and began using it immediately once I returned home. It is really the only reason I could have a life because pain killers prevent me from thinking clearly and functioning normally at school.

I've had Crohn's for 15 yrs and started using marijuana about the same amount of time. When I have to spend all day at the university, I pack a "medicated" edible in my lunch. I don't always eat them but at least once or twice a week I have terrible pain while I'm at school.

So as long as you don't have any prejudices with marijuana, i think it is much better for treating Crohn's pain and symptoms than narcotics.

It also takes away the suicidal thoughts that a lifetime of Crohn's gives me sometimes.

I hope this helps any of you out there who can relate.
pain management
by: Tod

First thing I WOULD TELL YOU IS THAT PAIN IS JUST A SIDE EFFECT. WHAT IS BEING DONE TO CONTROL THE UNDERLYING PROBLEM? Pain management is not just about the drugs (I have had Crohn's for 42 years and, believe me, I have been through every type of pain management available). It is also about the control of the disease itself. When my doctor prescribed Remicade treatments 5 years ago, my life, and my pain did a 180!
There are so many other, natural helpers, that are not narcotic or costly that DO work.
This Foum is full of alternate suggestions. Your diagnosis is new, but our disease has been around for a very long time and there are many different treatments. control the disease itself and you will control the pain!

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crohns and joint and muscle pain

by Gail
(Pa)

does anybody get joint and muscle pain with a crohns flare up?

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In pain NEW
by: Ronda

I guess I've had crohns/uc for some years, but had my first & hopefully my last big flare last May. Was on prednisone for over 5 mos.(40mg daily). Really hoping to control remission with 'clean' eating and stress reduction, but transitioned off prednisone with Apriso. Way too expensive for me so I'm faced with the decision again of how to manage. Not sure if it's the drugs or just from being so ill, but have lost nearly 3/4 of my hair, thankfully it's curly and looks like more than it is. Now, since getting off prednisone, I am experiencing severe joint pain. I was thinking it was drug side effects, but upon finding this forum, perhaps my doc is right....I am one of those that questions everything....
I wholeheartedly agree that cutting out all processed i.e. sugars and grains, and eating as clean as possible i.e. organic produce and meats, supporting good gut flora...& all that, is a very good idea. Tho easier said than done...I do pretty well...but haven't been impeccable enough to say it helps but I am trying...
In pain NEW
by: Ronda

I guess I've had crohns/uc for some years, but had my first & hopefully my last big flare last May. Was on prednisone for over 5 mos.(40mg daily). Really hoping to control remission with 'clean' eating and stress reduction, but transitioned off prednisone with Apriso. Way too expensive for me so I'm faced with the decision again of how to manage. Not sure if it's the drugs or just from being so ill, but have lost nearly 3/4 of my hair, thankfully it's curly and looks like more than it is. Now, since getting off prednisone, I am experiencing severe joint pain. I was thinking it was drug side effects, but upon finding this forum, perhaps my doc is right....I am one of those that questions everything....
I wholeheartedly agree that cutting out all processed i.e. sugars and grains, and eating as clean as possible i.e. organic produce and meats, supporting good gut flora...& all that, is a very good idea. Tho easier said than done...I do pretty well...but haven't been impeccable enough to say it helps but I am trying...
jj got questions NEW
by: poodoo

hey ive got the same thing going on. exactly. when you said forarms. wow....i dont know if its my chrones or something else. I just live with it. it comes and goes. It seems that fall time it hits my colon throughout the winter and now in the summer spring and summer my joints and not so bad on the colon. weird.... i live in indiana...we get all four seasons..tell me more about your stuff.
jj
by: jackie

jj............I forgot to tell you, I've been off meds since October, because my hair was falling out from the pentasa, and I was feeling TERRIBLE. So since seeing Dr Chen, I've been on NO meds at all, not even vitamins. EVEN lab work has improved.
Now, if you're ON meds, I sure wouldn't advise u going off, but find an herbalist, sometimes both Eastern and/or Western meds are what we need.
Good luck
aches and pains
by: jackie

JJ....so sorry you're feeling all the aches and pains
Are you on any meds at this point? I
I do suffer from sacralileitis (pain in hip areas) due to inflammation, from Crohns. So some mornings is rough getting going.
However, I have been seeing an herbalist since last October and with the herbs and diet changes, I have only had ONE diarrhea stool since October and have gained 4 lbs.......lol.
I met him at a Crohns and Colitis conference. He was one of the speakers along with Western medicine doctors. He has been working with IBD/Crohns/Colitis patients for many years and is a member of the Crohns/Colites Organization.
Anyway, I'm in California, don't know where u are but a NATURALIST/Herbalist may be of some help to you. His name is Dr Gary Chen, Encinitas, California. If you're not in this area, perhaps his office has contacts in YOUR area.
Hope you feel better soon
Muscle & joint pain
by: JJ

Glad to see I'm not crazy then.... Or at least not crazy...er... I am typing this from my bed at 11pm can't sleep because of the joint pain in my fingers, wrists, shoulders, knees & lower back ... As well as the muscle pain in my forearms .... I believe whole heartedly that it's the crohns causing it...
1: I never had it before my crohns flared up
2: I get it worse just before and after diarrhea
3: I'm 28!! And I feel 90!!!
Chrons
by: Jackie

Since I have been of pentasa since May 30, and only taking vitamins and probiotics, I feel great. Haven't been bothered with muscle aches/pains. However, my doctor is concerned that I'm not on any prescription meds and that I may have Crohns issues later on, so he wants me to consider remicade or humira. I'm hesitate because of the possible side effects, some pretty bad. At this point I'm more afraid of taking the meds than the idea that I may get sick later on.
Will let you know how it goes
crohn's and muscle pain
by: Pam

I was diagnosed with Crohn's 14 years ago. I have had severe muscle pain the entire time. I've been told it's fibromyalgia. I don't think that's right. You know how you just know it's something else...it's this horrible disease called Crohn's? Well, that's how I feel. I just know it's the Crohn's and there's nothing that the doctors seem to do to help the muscle pain go away except steroids. I feel like Wonder Woman when I'm on them, but they have horrible side effects too and eventually the feeling of euphoria wears off and I crash anyway. I gain lots of weight when I'm on them and then can barely move because I'm so fat. Sometimes I can't help but have a pitty party. I'm going to the doc today about the muscle pain and I think he's going to have me start Remicade. I'm keeping my fingers crossed that something can be done for this muscle pain. I can't stand up straight. My lower back and my neck hurt constantly. It's hard to sleep even because I have the muscle pain 24/7.
crohn's and muscle pain
by: Anonymous

I was diagnosed with Crohn's 14 years ago. I have had severe muscle pain the entire time. I've been told it's fibromyalgia. I don't think that's right. You know how you just know it's something else...it's this horrible disease called Crohn's? Well, that's how I feel. I just know it's the Crohn's and there's nothing that the doctors seem to do to help the muscle pain go away except steroids. I feel like Wonder Woman when I'm on them, but they have horrible side effects too and eventually the feeling of euphoria wears off and I crash anyway. I gain lots of weight when I'm on them and then can barely move because I'm so fat. Sometimes I can't help but have a pitty party. I'm going to the doc today about the muscle pain and I think he's going to have me start Remicade. I'm keeping my fingers crossed that something can be done for this muscle pain. I can't stand up straight. My lower back and my neck hurt constantly. It's hard to sleep even because I have the muscle pain 24/7.
Body aches, myalgia
by: Jackie

It saddens me to read of some of the complications some of you are experiencing. I stopped taking pentasa. Had to make one trip to ER, got a shot of toradol for muscle aches and was put on prednisone 20mg daily x4 days. I feel 100% better. That was @3 weeks ago. I still have had no diarrhea, no aches.....except when I fall asleep on the sofa, and am eating everything in sight. I am still on heavy duty vitamins...all of them and probiotics, which I'll probably take the rest of my life. Keeping my fingers crossed .....
Muscle, joint pain
by: Josie

Yes, I've had IBD for over 20 years and have been complaining about joint and muscle pain the entire time. I have it all the time now and it's not during a "gut" flare-up. I have weird skin conditions too. I've gone to a zillion specialists and have had a zillion x-rays, tests, CTscans, etc. and haven't been helped one bit. It's so discouraging and frightening at times but I know I'm not crazy and it's not Fibromyalgia, etc. I'm thinking since IBD is an immune system disease, like Lupus, it's just one of those aches and pains that can't bee seen on tests. And doctors don't believe it unless they can see it. Hang in there.
Back Pain
by: Heather

I had to to see a Rheumatologist because of the pain in my back. He told me alot of his patients get arithritis called Ankylosing spondylkitis.
Now I have read up on it and yes it is true. However, mine didn't kick in harder until I started receiving Remicade treatments, which they would use for AS as well, but when treatment wears off I can barely stand, walk, or crawl.
Very horrible disease.
Muscle pain & Crohns
by: Jackie

Several weeks ago, May 2010, I was diagnosed with Crohns. ALthough I have not had any diarrhea in over a month, I am now experiencing body( muscle) pain. I can barely stand up straight.

My GI doctor says it had nothing to do with Crohns........I disagree and am considering finding another Dr., with more experience with Crohns patients.

Does anyone have any ideas (solutions) that have worked for you? I don't have joint pain, just muscles from my temples to my neck, down my back, upper arms and thighs
joint pain
by: Dori

Yes, i get joint pain and in fact, it is worse than the gut pain at times. Right now, it is mostly my joints that are bothering me. Maybe I just have a high tolerance for the gut stuff, but the joints really impact all that I do.

Following a fairly strict diet of no sugar, no wheat/gluten, no dairy and it seems to help but takes a long time to reverse the symptoms.

Pain
by: Heather

Yes I have noticed when Iam in a stressful situation and have a flare up, the next day I am sore and hurt like you wouldn't believe. Every muscle in my body hurts. I still go to the gym, but its tough when I am so tired and my body aches in pain.
pain
by: Anonymous

Hi yes i get lots of hip pain. I have had a right hemictoclectomy. so only got part of my bowel. The doctors say the pain in my hip is a echo pain. im not to suer cause another doc said it could be siatica or a type of authritis caused by my crhones.
joint pain
by: Anonymous

definately yes
joint pain
by: Anonymous

definately yes

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joint pain

by joe hayes
(dublin ireland)

hi fokes , have crohns 10 years maybe more doing well .on asacolon 3 times daily fingers crossed doing the trick.only this week got bad joint pain in all joints ,does this mean internal flare up watch out any suggestions thanks joe

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Joint pain flare-up NEW
by: Annette

One of the problem with Crohn's disease is that it can suddenly seem to flare-up for no reason and happens completely out of the blue. This can happen even years later when you have been congratulating yourself that maybe the disease was gone.

Crohn's is a chronic illness and this means it lasts a long time. It is also called the relapsing and remitting disease. This means that yes, the symptoms are likely to flare-up again. The symptoms can be mild or severe.

There are many flareup side-effects including joint pain, sore skin, diarrhea and, abdominal cramps.

Sometimes there seems to be no reason for it to happen, it just does but certain things can act as a trigger including: stress, smoking and certain foods or drink.

Try keeping a journal of the things you eat or if you are feeling more stressed or pressured and see if it coincides with these flare-ups. It must be painful and frustrating for you but hopefully, it will ease off soon.



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Crohn's and Pain relief-with other conditions....

by Tammy
(Massachusetts)

Hello, I was officially diagnosed with Crohn's almost 2 years ago but lived with the symptoms for many years. I have several other conditions that complicate matters. I have daily diarrhea (IBS), GERD, arthritis in lower back along with fibromyalgia (which only developed after chemo treatments for breast cancer 9 years ago). Needless to say at the age of 45 I feel more like I am 90 most days... I currently take asacol (sp?) for the crohns but I am also prescribed Ultram and percoset for the fibro., my question is my GP prefers me to take the ultram for pain however being aspirin based it often causes my stomach to be upset and I have noted lately more abdominal pain and I am wondering if the aspirin could be causing problems with the crohns disease. I understand the concern taking percoset however I don't want to be taking something that will worsen my condition and to be able to function daily I need something to control the pain. Thank you in advance for any info and advise-

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I hope this helps
by: Anonymous

I am so sorry you are suffering. I too have Chron's and have gone through any operations for it. In regards to the asprine, my GI told me not toake it as it may cause complications. I am on entocort and Byntyl. The bentyl works almost like a muscle relaxer and lowers the spasms in my intestines. My suggestion in to talk with your GI also about all the medications and possibly make some changes. I hope this helps and you feel better

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pain with crohns

by john c
(nc)

i have crohn's disease and am 21 years old. i was wondering if it is normal for my stomach to hurt very frequently even if i am not having inflimation?

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Pain with Crohn's NEW
by: Annette Young

Hello there,

Thank you for your post. I'm sorry to hear that you are experiencing frequent pain. Sadly, when you have Crohn's disease, it can be fairly aggressive and unpredictable and as you are experiencing, can quite simply make your life hell. The temptation to take many painkillers can be quite overwhelming just to help ease the continual pain; however, painkillers can do more harm than good.

If you are on medication that is not helping you, I would strongly suggest that you go back to your doctor or specialist for another appointment and to discuss these continual symptoms. You should not ignore pain. It may be that the medication you are on is not working and you need to try something different, this happens to a lot of people. Sadly, it is trial and error.

Although a lot of symptoms are similar, Crohn's disease seems to impact people very differently. Some people suffer terrible pain and others have fluctuating periods of pain or of generally feeling unwell and it just seems to occur like this. Learning how to manage your own Crohn's is important, but do understand that while there may seem to be a set pattern, this can quickly change. Never be afraid to ask help, Crohn's is a nasty condition and there is currently no cure available, so if help is available, use it.

Do check that it is not your diet that is actually causing any problems, many people find that by controlling their diet, they improve the symptoms but stress is a trigger too so you need to look at your whole lifestyle.

Check out this blog post:
http://voices.yahoo.com/acute-abdominal-pain-crohns-ive-learned-deal-1025559.html?cat=5

Please do go and seek medical advice and I hope they can help you.

Best wishes,
Annette
To anonymous NEW
by: Anonymous

I have severe crohns disease, failed MULTIPLE treatments, I just started my last treatment option 2 days ago. I just wanted to let u know what I have found after my countless hours of research. Ibuprofen in relation to ibd can, in fact, do more harm than good. It can cause bleeding ulcers & fistulas. I discovered this when I took some ibuprofen & recorded it in my daily log & for the very first time since being diagnosed with the disease I developed bloody stools & the pain intensified. Tylenol hasn't has any effect. it may just be because I have a severe case that isn't responding to treatment but I felt obligated to let u know what I discovered about taking ibuprofen with CD.
PAIN TREATMENT FOR CROHN'S NEW
by: Anonymous

My 25 year old son was recently diagnosed with Crohns. He was hospitalized for 2 weeks last November and was on TPN thereapy for 2 months.
Although he is doing much better, he gets a stomach ache at least once a day which he describes as being quite intense/painful. He has been prescribed Norco 10/325 for the pain but his mother and I are worried about the addictive properties of this drug. We monitor his usage and he takes one tablet per day.

Does anyone know if narcotic type drugs are commonly prescribed for the pain associated with Crohns? We are hoping that when he is through taking antibiotics (Flagyl and Cipro), his pain will subside.

Any comments would be greatly appreciated.
ex trucker NEW
by: mark

IM 47 and have tried 5different meds in the past 3yrs. crohns seems to be coming back with avegence for the past year ,since my resection and other meds
pain NEW
by: Anonymous

unfortunately yes, i use ibuprofen, 500mg only one a day otherwise you get constipated. but pain is just something that you will adapt to i find when im in bed if i raise my legs with pillows above hip height it helps with the abdo cramps, with your legs bent. just a suggestion, feel better soon

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Pain and sick to stomach

by Catherine McKinnon
(Rocky Hill, CT)

I was diagnosed with Crohn's disease about a year and a half ago. I was treated with all kinds of meds including being on predisone for the whole time. Now my doctor, who only has seen me twice during this time, is starting me on a TNF infusion (Remicade). I have been hospitalized 3 times over the past year and a half. I start the Remicade tomorrow, but I am suffering terribly with pain and sometimes sick to my stomach. The only time I received pain meds and Zofran (sick to stomach) was when I was in the hospital. She tells me she will not write a prescription for the above symptoms I have been house bound for this time. Should I ask my family doctor to prescribe something for me for two weeks.?? I now have moderate to sever Crohn's. I do not want to do something I should not, but I am in real pain. Can someone help me?

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crohns and bone pain

by shell
(australia)

I have had crohn's for many years with one surgery and about a 130 hospital admissions. Now for the past 6 months I have encountered what was mild bone pain and now chronic bone pain particularly in the hips lower back full leg and feet. I have nunbness and burning feelings in different areas with permanent numbness in my feet underneath, with pain being so severe that i can not stand on my feet at times. I take several medications for crohns and work fulltime when i can. Does any one have any suggestions as to what i can do to get rid of this agonising pain?

Comments for crohns and bone pain

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Crohn's and bone pain/ neuropathy
by: Anonymous

Yes, low vitamin D level, also low Vitamin B12 can cause those symptoms. Vitamin deficiencies are common with Crohn's. And as the first anonymous writer stated, it is important to see the Dr if you are on Humira, because it can cause neuropathy.

I also have Crohn's disease, and I had humira induced neuropathy and also the bone pain and the shooting pains that you described.

My humira had to be discontinued, and my crohns symptoms returned with a vengeance. I am currently trying to get it under control. I have been prescribed stelera, tincture of opium, cortifoam. Best of luck to you.
Numbness
by: Anonymous

If you are on Humira or something like it, get checked immediately. You could have a Humira induced neuropathy that could be irreversible!
vitamin d
by: Anonymous

Get your vitamin D checked.

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Joint pain and crohns

by Victoriana
(Hunter Utah U.S.A.)

I have had CD for 12 yrs now;am on asacol hd.I now have severe joint pain and muscle pain,fatigue.I tried so many rx's w/no relief-lyrica,gabapentin,tramadol etc.,I am desperate for relief,am now bedridden.Any suggestions?

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Joint Pain and Crohn's NEW
by: Annette Young

Hello there,

Thank you for your posts.

I feel so sorry for your pain. I know just how difficult it is to keep going when you feel so exhausted and wracked in constant pain.

Unfortunately many people tend to develop sensitivity or reaction to their medication and it may well be why you are in such bad way currently. While we can't always blame medication, because for many people who have Crohn's disease, the medication is an absolute lifeline, it does not cure the disease and is not going to suit everybody.

I would strongly suggest, if you haven't already, returning back to your doctor in the hope that they can give you a different type of medication to see whether that makes any difference. If you still have aching joints or abdominal cramps, try using a warm pad which can help to ease any pain. Again, it works for some people and not for everyone.

If you're still feeling fatigued, you could try relaxation techniques and meditation because this actually can help to improve your sleep pattern and for you to be able to let go of some of the pain. It's not a cure obviously, but it can really help and at least is an alternative to more medication.
It is worth trying Vitamin B complex in case you are deficient but do take them for some time so that it gives your body the chance to absorb. Check out this article for confirmation of Vitamin B and what it does. http://www.webmd.com/food-recipes/guide/vitamin-b12-deficiency-symptoms-causes.

Latest research also indicates that Crohn’s sufferers might be deficient in Vitamin D too but results are not yet conclusive. I would always suggest seeking medical advice but to also look at more alternative solutions too so that you cover all bases as such.

Do let us know how you get on.
Best wishes,
Annette
Joint pain and crohns NEW
by: Anonymous


Asacol can cause all of your symptoms. You might have hypersensitivity to the drug: http://www.drugs.com/pro/asacol-hd.html

I advise you to check the side-effects of all your medication and any supplements that you may be taking.

A doctor told me a story about a patient who had severe symptoms and they turned out to be due to Ayurvedic medicines that she ordered over the Internet. The tablets were pretty innocuous, but they had delivered them in a lead box and she developed lead poisoning.

I suggest that you discuss with your doctor supplementing with the following: vitamin B-complex for pregnant women, vitamin C, zinc, calcium and vitamin D, magnesium, selenium, fish oil, in addition to increasing your protein intake (white fish, chicken, tofu, eggs, low-fat milk) for your joint and muscle pain.

The above supplements might in part address your fatigue, if it is not caused by inflammation or the Asacol. You might need to drink astronaut drinks, like Ensure, if you are too tired to cook proper meals.

Vitamin B-complex deficiency can cause the symptoms that you have. Be aware, that it can take months of daily supplementing until the body has righted itself after year-long vitamin deficiency. Most people give up after a couple of weeks because they don't notice any tangible difference.

I suggest that you read the following:
http://www.dailymail.co.uk/health/article-1395028/How-medicine-draining-vital-nutrients-body.html

http://www.dailymail.co.uk/health/article-1197979/Heartburn-pills-wrecked-life-How-antacids-effects.html
Useless meds... NEW
by: Peter Bray

Western Meds are only created to suppress symptoms and NOT cure anything having to do with Crohns- 24 years of useless ASACOL, MP6, Prednisone steroids, and Remicade and the pathogens were eating Cathy alive resulting in a looped, temporary ileostomy, a stoma and an external waste bag giving her still attached colon a break--she takes enzymes for the arthritis-like joint pains, plus probiotics, aloe vera and is doing well--still has Crohns problems but is better than she has been for 24 years on useless Western Meds---

Be a "WAR on Crohns"---

PetrBray@AOL.com
ex trucker NEW
by: mark

no solution .Im seeking a pain spealist right now with help from 4 other doctors sorry . But i pray for a solution and for you . GOD bless

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Abdominal pain and crhons

by Nancy
(Brooklyn, NY)

My daughter who will be 12 soon, suffers from severe abdominal pain. She gets them for about 8 hours straight. What can I do to manage the pain. She hasn't been in school for over a month.

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Abdominal Pain
by: Annette

Hello,

I am sorry that your daughter is suffering so much. Abdominal cramps are terrible and you must be feeling very frustrated and helpless standing by.

It’s also hard to explain what is happening to a child and the diagnosis can be quite frightening. It is likely to have a direct impact on her life generally. You mentioned she is missing some schooling and that’s obviously going to be a problem but also that she will lose the social aspect of bonding with others. Hopefully, the condition can settle allowing her to go back to school and to have a relatively normal life.

Sometimes it can help to have mashed food or to eat soups. Consider foods that are high in nutrients but very easy to digest. It’s important that as little pressure as possible is placed on the digestive system. She must drink plenty of water –very important –even more so if she gets diarrhea too.

If she is on medication then it is worth getting the medication checked out again and to tell the doctor what is happening. Not all meds work as well as on others so don’t be scared to ask for help. She should watch what she drinks – carbonated drinks are lethal and really plain water is the best thing for her to have.

Children get stressed too and stress can certainly make the condition worse. It was thought that stress was one possible cause of crohn’s at one time but it has now been proven that it acts as a trigger instead. Try to reassure her that it will get easier and it is likely to. Crohn’s is a condition that seems to come and go, although there is no cure but she might suddenly find that she has no symptoms for many years and life can return to normal.

But in the meanwhile, do get her checked out again just to ensure nothing else is happening.

I really hope this helps, please do let us know how she gets on.
Abdominal pain and crhons
by: Lydia D.

The doctors don't really take Crohn's pains seriously - they just think that it comes with the territory and we have to get used to them. Perhaps, a hot-water bottle or ice pack will help with the pain.

Please discuss all the following with her doctors:

Give her pureed and mashed foods, lots of broths, nothing with seeds/skins/pips/high fibre/etc. Boost and Ensure can be given to her - these must be sipped slowly throughout the day with several sips of water inbetween. Caveat: they can cause blockages if severe intestinal inflammation/stenosing is present.

There is some excellent dietary information at the end of this paper:
http://www.medicine.virginia.edu/clinical/departments/medicine/divisions/digestive-health/nutrition-support-team/nutrition-articles/September2005.pdf

Vitamin and mineral deficiencies can cause abdominal pains on top of the Crohn pains.
http://ods.od.nih.gov/factsheets/list-VitaminsMinerals/

Her medication could be also contributing to the pain www.drugs.com

Severe pain may indicate abscess formation, perforation of the bowel, severe blockage of the bowel, moderate to severe Crohn's, etc.

She needs to drink lots of fluids and keep hydrated because Crohn's patients are at risk of thrombosis, particularly stroke and pulmonary embolism. She should not be on any colas or sodas or carbonated water - build up of air in the intestines causing wind and severe pain. Sweets will have the same effect. Make carrot/banana/peach cake with no icing and reduced sugar. It is best to bake with oil where possible. Do not use margarine because of the dangers of trans-fatty acids forming during baking/cooking.

I would suggest asking the doctor if it would be OK to give her a daily child's sublingual or chewable multivitamin tablet, fish oil capsule, magnesium, zinc, copper (Sabona non-magnetic copper bangle). The correct doses of supplements will probably be around 50% adult doses. Please confirm with the doctor.

It sounds to me as though she needs to get a second opinion. If she hasn't had a small bowel follow through (SBFT - Google) recently, then perhaps she needs one to work out what is going on.

However, it could be largely due to roughage in the diet or medication side-effects.
ex trucker
by: mark

after bowel resections and several different meds im still strugling with constant pain , but im not giving up .im tried so many pain meds nothing is working ,getting ready for a pain speasialist. took pill with camera inside it and it didnt pass so their going to do endoscopy trying to get into my smll intestines . last time it ended up by a small bowel resection ,so here we may go again
ask her what is making her unhappy!
by: Kit

How you think is how you feel.
If you all believe that Crohns disease is something you just live with, then that's exactly what will happen.
Please, please realize that if the body is in stress, dis-ease, then the cells will be affected.
Want more proof? Read or listen to Dr. Bruce Liptons book 'The Biology of Belief'.
There you will finally have scientific and biological proof of how cells go bad.
Doctors will keep you where they can supply you.
Their mission is to deal with the symptoms.
Look for the cause.
Your daughter is the same age as myself, when I first started bleeding from the bowel.
53 years ago, after fundamentally changing my mind, I dropped 'Crohns' in the middle of an acute bleeding attack. It is no more. It is just a name for symptoms that are occurring.
Ask your daughter what makes her fearful, anxious, angry etc. Who has she learnt that from?
We have to take responsibility for how we make ourselves feel. And that begins and ends with the mind.
If you believe anything different, good luck :)
Kit Campbell
'The Irritable Brain Syndrome'

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