Newly Diagnosed with Crohn's disease

by La

I am 35 years old and have been recently diagnosed with Crohn's disease. However the doctors suggest that I have probably had it for multiple years and no one ever picked up on it. I am going on Friday to be put on medication and for the doctors to help me with any questions I have.
About 6 years ago, I had extreme weight loss, and I was bleeding very badly when I went to the bathroom. I had tests and they never found anything, so I just let it pass. But within the last 4 years, I've had extreme weight gain, I am now over-weight and the bleeding has returned. I'm often constipated, but when I do go to the bathroom, I go very frequently. The doctors did a barium x-ray last friday and instead of the normal few hours that it takes for the barium to pass through your system, it passed within 20 minutes. I have been told I have a large fistula, and I am very inflamed.
Everything I have read about Crohn's speaks of weight loss, but why am I experiencing weight gain. I've gained so much weight I'm so ashamed of my body. Then I read that the medications that are used to treat Crohn's cause weight gain. This has depressed me beyond belief. Can someone talk to me, tell me what I'm supposed to do. I don't want to gain any more weight, I hate my body as it is. Are there other alternatives for medication? Can someone please be a friend and talk with me.

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Newly Diagnosed with Crohn's disease NEW
by: Lydia D.

Unfortunately, one is very much alone with an illness. I have given up telling people that I am sick. I live a hermit's existence because I am fed up of being bullied into doing things I can't or shouldn't do and I am too weak to assert myself without getting completely stressed out.

If your doctors say rest then stay in your bed with the TV, a pile of good books, magazines, knitting, whatever, and let the healthy individuals run after you. Resist letting yourself be bullied and turn the phone off when you are resting.

Your partner should be doing all the housework while you recuperate. If you don't do this, you can end up with a ruptured and infected wound, peritonitis, sepsis, which can lead to death. The more you rest now, the faster you will recover. It might be useful to keep a diary of events to track your own progress. Make it clear once again that you are not allowed to bend and stretch. With an ileostomy you should not do any heavy lifting. This is the long-term situation. Use the worn-out record technique. I am sorry to say this, but your partner sounds pretty heartless. It is obviously a total lack of understanding. If he is interested in you as more than a live-in house keeper, he will do some research and inform himself.

I do know where you are at because I have had 5 major gut operations and people expect you to just bounce back, which is not realistic. My algorithm is that the length of time it will take to recovery is approximately the same length of time you have been severely ill and possibly a bit longer. However, an ileostomy with Crohn's disease is double debilitating and you will often suffer from dehydration, weakness, malaise and exhaustion. Remember to increase your salt and water intake.

I would encourage you to google the pdf file The Mourning Process in Chronic Illness, print it out and read it. Also print out the following and leave it lying around when relatives and friends visit. Put a file together of useful articles.

Try and build up a network of sympathetic telephone contacts - fellow sufferers are best. Healthy individuals are frightened of illness and will always make light of your situation and tell you to pull your self together and just get on with it. Join the local group. Caveat: not all of them will be supportive.

Smoking is a mega no-no. I was in hospital in March this year and was joined by a 30-year old Crohn's patient who had smoked for 15 years, never been in remission and was admitted with her first heart attack. She needed a stent placed. The paramedics told her she was having a panic attack. It was only when she "died" and the doctor resuscitated her in the ambulance that they sat up and took notice.

Hang on in there.

new to Crohn's PART TWO NEW
by: Anonymous

Also I have beeen feeling very alone as even the most supportive family members just don't seem to understand what I am going through. Ie I am only out of hospital by a few days and still in chronic pain from the surgery and complications and I have family members offering to drop off plants so I can start a veggie patch so I 'have something to do'! And another family member wanting to come up and put the Christmas tree up together when they are aware that I am under strict orders to have plenty of rest and nap twice a day until the surgery pain and complications have healed a bit better.
Then my partner on a few hours of an afternoon I had designated to rest due to chronic pain asking if I could just put on and hang out 4 loads of washing quickly first. (I am not meant to be bending down to the floor based front loader or hanging clothes, lifting washing baskets etc).
Then I hear him saying on the phone jokingly that I have been told to take it easy and am not listening to anyone! Arrrrgh!
I know they mean well and have been fantastic but at the end of the day it just feels like they don't really understand as they cannot feel the pain and the emotional impact of what I am experiencing.
There is a support group nearby that I will definitely join asap but being just before Christmas I thought a chat forum might be a good idea in the meantime.
I am also still on the steroids but they are being tapered down over about 6 weeks to nothing. So I am still gaining weight but hoping this will settle. However, I have found the steroids have helped a lot with symptoms so I don't know if I am a suitable candidate to be taken of the steroids - I guess time will tell.
Also I was a smoker but have been told that is a big no no with Crohn's so I am not going to put too much pressure on myself re weight just yet because I know giving up smoking can cause weight gain anyway. I am determined not to light a smoke again as I have known two people with Crohn's and the one that was a smoker was always really sick.
I guess the hardest part for me is the emotional side of things. I was actually already suffering from depression and Post Traumatic Stress Disorder from a car accident and abuse and just discovered a few days ago that because my anti-depressants were extended release they just go straight through my ileostomy bag. (they definitely do, I've seen them all go through and realised what it was once the pharmacist said this was possible). Coming off these anti-depressants suddenly at any time can have a bad effect but on top of the surgery and the whole almost-dying thing I guess it's just made it extra bad. But I am feeling a little better each day and my GP has put me onto another anti-depressant so I'm sure that will kick in soon.
I just want to stop feeling so alone.
Thank you for reading - and I look forward to hearing how you are going.It's so comforting to know there are others out there in the same or similar boats. Many Thanks, Tanya :-)

new to crohns PART ONE NEW
by: Tanya

Hi I'm Tanya from Australia. I am 32 years old.
Wow,I am almost in tears being able to read about people in a similar situation. I've been feeling so alone.I was just diag w Crohns on 8 Dec.
With regards to weight gain and steroids, from the tiny amt I now know, most ppl can be tapered off steroids & manage on other medications.I hope this will be the case for you.
The saddest part is how I was diagnosed-I have been begging diff Docs for a referral to a Gastro for 4 years only to be told no, it's just IBS.
So it got to the point where I took my 1st ambulance trip in my life in Jan this year.
After my 3rd ambo trip they suggested I may have an IBD,not just IBS,& said they'd refer me for an urgent colonoscopy within 4 wks.This was a few months ago.After lots of pushing I managed to get a consultation with a Gastro but no physical was done. They suspected I had Crohns and put me on 40mg steroids p/day & I gained about 10kg almost immediately.But it turned out that would be the least of my troubles for now.I was getting sicker and sicker from anaemia from all the blood loss, constantly short of breath and basically feeling like I was dying.I kept phoning the hospital but could not get Colonoscopy any earlier than Feb.
Then was my 5th ambo trip just this month late on 3 Dec,when they discovered that, even though they had recently done blood tests which had come up bad but apparently not bad enough,I now needed an immediate blood transfusion as my organs were shutting down. There was still a chance my body would reject the blood and I could die. It was so bad they would not even move me to wheel me to a toilet until they got some blood into my system.
An x-ray immediately thereafter indicated a ruptored large bowel so surgeons were called in for emergency surgery right then and there - by now this was 2am on Sun 4 Dec. They could not guarantee that I would make it through the surgery.It was a long few hours for my family and fiance but fortunately surgery went well and I now have a temporary (but they won't guarantee that) Ileostomy bag etc.
4 days later pathology results showed I have Crohn's,as I have suspected for sometime, but since I was receiving no acknowledgement I'd become v depressed & worried I had hypochondria or munchenhausen syndrome, & from comments being made around me I think a lot of other ppl were too. Generally I have tried to stay positive as I always am & feel at least it's a push for a healthier lifestyle & after 4 years of chronic pain I have an answer and can receive treatment.
I guess I just feel angry that things had to go this far when I was already having CHRONIC symptoms for years. I nearly died!


Newly Diagnosed with Crohn's disease
by: Anonymous

I am sorry to hear about your diagnosis. I was diagnosed when I was 32 after over 25 years of symptoms. There are many diseases that have this prodrome phase and Crohn's is one of them.

Because your disease went undiagnosed and was allowed to run its course, you have most likely developed stricturing (ring of narrowed intestine) and stenosing (sections of narrowed intestine) with fistulising Crohn's. This would in part explain your weight gain. The narrowed sections of intestine will cause food to get stuck and this will allow increased absorption of calories. I also suspect that your diet has also changed in the time period and that you have increased your calorie intake to compensate for missing nutrients and decreased any sport activities because you are so ill.

Diarrhoea with constipation is called overflow and is common with constipating Crohn's or intestinal blockages. Try sticking to pureed food and avoid leafy greens, bananas, skins, pips, etc., cooked or raw for a few days to see if that decreases the constipation. Your doctors must rule out a conglomerate tumour of the intestine, which would be an additional explanation for the short intestinal transit time over and above the fistula.

Newly Diagnosed with Crohn's disease
by: LydiaD

Your depression will also be fueled by lack of micronutrients. I recommend that you take a vitamin B-complex tablet (up to 300% RDA is not an issue) with zinc, vitamin C, selenium, and magnesium. Sub-lingual tablets are better. A lack of calcium can also contribute to depression. If the disease is advanced and in the terminal ileum then it is unlikely that you will be able to absorb the fat-soluble vitamins (A, D, E, K) and vitamin B12 - the doctors must investigate this as a matter of urgency. If this is the case you will need vitamin injections.

Don't overdose on the fat-soluble vitamins:

I seriously suggest that you rethink your diet and remove all sugar, honey, sweets, chocolate, sodas, colas, fast foods, etc., i.e. everything that will make you fat. You might have developed a secondary lactose intolerance - buy lactose-free products and see if this makes a difference. You really need to get a referral to a nutritionist and eat high vitamin and mineral rich foods with higher protein and no sugars, low saturated fats and lower carbs than you are eating now. Olive oil is good. Fish oil capsules are good. You should be checked for an underactive thyroid gland - selenium should help somewhat here. Diabetes should be ruled out.

It is generally the high-dose steroids (over 30 mg/day) that cause weight gain. There are not natural alternatives for this medication, but diet is also very important and very individual - especially in your case.

For your fistulising disease you should be put on Remicade or Humira and they will probably only have you on steroids until the other medication kicks in. If you don't take the medication you will increase your risk of landing on the operating table.

Keep a food, mood and symptoms diary. This will make it easier to communicate with the doctors.

weight issue with chrons
by: lizzie

Hi firstly i am sorry to hear you have recently been told you have chrons, but as you already know it is a very nasty hard to live with illness as people dont understand unless you have the nasty disease.
I am 32 years old with two young children.
I have had chrons for 12 years and had 2 lots of surgery, my chrons is still very active and i have tried so much medication suct as humira, infliximab, methotrexate and had reactions with all i have tried, i have been on steriods now for over 2 years constantly 40mg daily and if i try and reduce my dose i am very ill, my consultant has just started me on mercaptopurine a chemo drug used for lukaemia patients to try and help get me off the steriods as i am also very concerned about my weight and to try and help buy me time regarding having a stoma fitted.

I have never really lost any weight with the illness what so ever, please feel free to email me if you want to chat -

Hope you feel better soon x

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