New Chron's patient wants feedback, PLEASE!

by Sue
(Georgia)

I have just been diagnosed with Chron's. I have gone two years being sick and no one could find anything wrong. I have had stomach issues my whole life and I thought it was just normal for me. I have had anxiety in the past so I blamed everything on that. So did every Dr. I saw. I recently had my galbladder removed because it was only functioning at 5%, no stones, just not working. I thought this was the end to all my problems. But I guess not. I went to a new Dr. for a yearly checkup because my regular Dr. had to take a leave of absence due to her illness with Chron's disease, (how ironic). My new Dr. ran a series of blood test because I told him of some symptoms that I was having (nausa, upset stomach, sometimes chills, and dizziness.) I had heard that right after your galbladdeer is removed that some foods will still go straight through you until your body adjust. So, I didn't think much about it. He said he was just going to check a few things out that could cause those symptoms. The main test he wanted to run was for Celiac disease, because my mother has it. I was negative for Celiac but he told me that Chron's showed positive. I am now trying to find out information about Chron's and treatment. The Dr. gave me Asacol to take daily. I am worried about taking an antiinflamitory over a long period of time. Are there natural options? Is nausa common with Chron's? And does it come on with no warning? I feel like I have a stomach bug all the time. I recently went to Las Vegas with my husband and landed up in the ER for 10 hours and sick in the bed the next three days. Not a good trip. We were only there for 5 days and I was sick three of them. I feel like I can't go anywhere because I might get sick. Any suggestions on how to deal with nausa when it strikes? I get depressed because I feel like I put a damper on everything. I used to love to go places and do things but not anymore. Some days I feel great and others I am so tired that I just want to go to bed and feel like I can't function. I know that I am rambling but it is nice to get this off my chest. Please, if anyone has any adivce plase write back.

Comments for New Chron's patient wants feedback, PLEASE!

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Feedback NEW
by: Annette Young


Hello,

Sorry to hear that you have been suffering. Crohn's can literally knock you for six and it can take a while to come to terms with any diagnosis.

Nausea is certainly common with Crohn's. There are many potential symptoms with this disease however including:

Abdominal cramps
Nausea
Diarrhea
Constipation
Skin rashes,
Headaches
Joint pain

Crohn's affects people very differently and you may have chronic or acute attacks but you may also find that the condition suddenly dissipates too. You may experience minor symptoms or be unlucky enough to have them all at varying times. But when the condition eases, you enter a period of remission and it can last for a long time. Some people experience years of normality but do be aware that as there is no known cure, it can be incredibly difficult to cope with when it flares-up.

Keeping a close eye on your diet is a first step. Eliminate really hard to digest foods, in fact make it as easy as possible for your body to digest foods and to absorb the nutrients it needs. If you are being sick, you may find you are missing out on valuable nutrients.

It is more a case of learning how to manage Crohn's that to beat it. Take any prescribed medicines but if you find that they do not work well, then go back to your doctor and try out some different prescribed medicines. There will be one that suits you.

The important thing is to work with your body and not against it. This way you take away some of the stress of the disease and it can help you to cope.

I hope this helps.

Best of luck,
Annette




ASACOL REALLY HELPS
by: Anonymous

I've had Crohn's disease for almost twenty years now, and have been on asacol evey day since the beginning. it is extremely helpful. a lot of Crohns sufferers simply dont take medicines, look for natural remedies. Not always helpful. Maintenance drugs are a crohn's sufferers friend. I relate to your story - I'm getting married next week, but guess who cant eat a thing because of the current flare-up? guess who cant leave the country for the honeymoon? Once you get it really under control you can live a normal life, but don't hesitate to take the asacol or whatever the doctor prescribes for the long term.

Reply on Nausa
by: Anonymous

Hi Sue,

Wow. it was like I wrote your page myself. Gravol
has becom part of my daily routine for nausa. I can take the pain over the nausa anyday. High tolerance to pain I have. When I travel tend not to eat till I get to my destination. I know that is not good but if the road trip does not have well planned out washrooms along the way .... eating just doesn't help matters.

I sometime pack a thermal - bag and eat just past the 1/2 way point or I know that a washroom
stop will be coming soon.

Gravol... on my desk, kitchen, washroom, purse
night table etc.... I never, never leave home without it... "Trust me when it hits I am ready"

I like the orange chewable myself : )
Unfortuately we don't always know when the fever, nausa, pain and everything else will hit.

If I know that am leaving town for example leaving this Thursday I start eating clear homemade soups protien based nothing heavy ... Stay away from anything that may get stuck in the system along the way.

Tired most of the time, Naps throughout the day is normal for me. I have B 12 injections bi-weekly. My body doesn't produce B-12 since my surgery. They help alot !!

New is the joint pain.... lower back, wrists, hands, knees or whole leg. The pain that goes with this ....I can't even try to explain.

If you feel it coming

Hands and wrist .... Slow down don't try and finish what you started.

Legs and knees... I put them up ASAP !!

It could hit just one area all five at a time.

Slow down or it could hit hard. It works for me and yes I did learn the hard way. I would push myself when I feel it coming. Just to get things down that could wait one more day. I only take the pain meds when I just can't handle the pain and becomes out of control.

Don't lift the grocery bags on big shops anymore. My daughter has been a big help. We go together and she will lift and put everything away.

I hope this was of some help to you.

Take Care,
: )

Thanks for the comments!
by: Sue in GA

Thanks so much for your comments. I have read that it is important that you use vitamins that are made naturally not synthetic. Does anyone know a good source for natural vitamins? Has anyone found out a way to stop the chills when they happen? I have been able to tolerate the cramps and upset stomach but the chills last about three hours when they happen. They just about do me in. I haven't found out what triggers them yet. I heard about a good book "Breaking the Vicious Cycle" by Elaine Gottschall, it is supposed to have a specific Carbohydrate Diet for Crohn's patients. I am going to try and get it today. I am very thankful for this website, it is great to be able to talk with others who have the same problem. Please continue to send comments and information, I want to find out as much information as possible. Knowledge is power! With God's help I know we can find the answers.

Options
by: Anonymous

You sound a lot like me. I was diagnosed by accident when the GI suggested a colonoscopy when I went to him for a gastroscopy. As for non-drug control measures, there are a few that have worked for others. The first is the Specific Carbohydrate Diet. It is designed to control the inflammation caused by trigger foods. See: http://www.scdiet.org/ for more. There are a few other aids. First, you should have a probiotic supplement that provides a collection of Lactobacillus/Bifidobacter/etc. bacteria. These have been shown to help reduce inflammation and displace harmful gut bacteria. SCD method yogurt or kefir (NOT store bought) is also very valuable for many reasons. Finally, because your gut is damaged and not functioning properly, you need a multi-vitamin (no iron) and extra vitamins C and E as well as adequate B12 and Folic acid in the multi. You might need to check your B12 and iron levels since you might not be absorbing them. I am newly diagnosed, but I am in remission mostly because I control problem foods and have done so for years.

reply to crohns
by: Anonymous

Did you have a colonoscopy to diagnose your crohns. My daughter is six years and has been ill for three years. She has has 2 colonoscopys and a berimeal. The berimeal revealed abnormalties in the ielium but until they get biopsies they cannot diagnose her.She has terrible abdominal pain and fevers. Bad arms and legs and burning when she goes to the toilet. It is a terrible illness that controls your life.she has been put on liquid diet MODULEN IBD and this helps. She completely stops eating and lives on these feeds for weeks when she feels much better. Hope this has answered your question.

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