Anybody else have Crohn's Disease?

Allie_Dreams

I am looking for other people who may have Crohn's Disease, It would be great to talk food, exercise during flare ups and so much more. I have been having a very bad flare up today, so much that I just stayed laying on the couch, cooked dinner (Filipino Adobo Pork ribs), and that's it!

poustotah

My 7 year old son was just diagnosed with Crohn's so we have changed our diet to accommodate him. I'm still learning about it, but so far, we see to be doing pretty good.

Raches5638

Hi...I have Crohn's disease. I was diagnosed 3 years ago. I struggled with it a lot at first and hit a pretty low period about a year and a half ago. My doc wanted to put me on remicade. I didn't want to go on something for the rest of my life so I went on pentasa and dicyclomin. I still had flare ups every month or so (usually around the time of the month) in which I basically couldn't eat or do anything, and would just curl up on the couch in pain. Last May I decided I wanted to go off the meds because I'd like to try for a family soon, and don't want to be on the meds when that happens. So I've been meds free for about 4 months.

For me, the plainer the food the better. Dairy usually doesn't do well with me or anything super rich or fried. For recipes I use healthy cook books or books with recipes following the specific carbohydrate diet. I also really enjoyed Breaking the Vicious Cycle by Elaine Gottshall. I haven't been keeping up with my exercise as much lately but I need to get back into it...Exercise (even just walking) ALWAYS makes me feel better. I'm also taking a yoga class that's helping me learn how to relax.

Crohn's is definitely a struggle, and can be a complete pain when flare ups come up seemingly out of no where. I know what it feels like to feel alone, but surprisingly lots of people have Crohns. Hope you can find some solutions that work for you!!

Allie_Dreams

Thanks for the replies it is nice to know I am not the only one. I could not imagine being a kid with all this. Being an adult is tough enough. I take Asacol for the Crohn's (which I have discontinued) I am also on Donnatal (Bella Donna alkaloids mixed with Phenabarbital) for Abdominal spasms and Diaherrea. I have a crohn's cook book I got in the mail free. It is just hard. I can't really eat dairy because of Lactose intolerance, no green leafy veggies (flare ups), no fruits (my trigycerides) no juices, No sugar (type 2 diabetes), no artificial sweetener (Crohn's), the list goes on and on. What I am basically allowed to eat is Fish, Turkey, & water.I can't live on that alone. So of course one of my doctors are always mad at me.

Happyoceangirl

Count me in - I was dx at age 21 with Crohn's. I'm 33 now. I've been on MFP for over a year and have yet to bump into others with similar health issues. It can be lonely.

Although I've had this for a long time, it's just been in the past year that I've really learned how to best manage flare ups. I have a fantastic doctor and a supportive partner, and that does help a lot. As far as severity - I had a surgery at age 21 (ileal-cecal resection), and have had 3 other hospitalizations due to blockages. No fun. I'm not on medication, though when a flare up occurs, it's managed by a prescription of prednisone and reverting to a low residue diet.

For what it's worth, I recently ordered Sherry Brescia's "Great Taste No Pain" system - it's a system of manuals the describe the principles of food combining, as well as a cookbook with recipes. For about $40, I got some information that has been very useful. Essentially, it's bad news to combine proteins with carbs/starches in the same meal, and it's important to only eat fruit ALONE. Since learning this, I've been able to drastically reduce stomach bloating, gas, and the dreaded D.... Granted, it may not work for everyone, but so far, I'm very happy with the way it's impacted my health....

Allie - I'm glad you posted this topic - thank you. If there's any way I can help, please let me know.

Allie_Dreams

Thanks Smiles it is nice to know I am not alone.

SP0472

I have Colitis. In the same family of illness

I've been having the worst flare-ups this week. I don't know what to do anymore. There's no treatment for either condition. I keep eliminating different foods from my diet but nothing brings relief.

Has anyone tried the Specific Carbohydrate Diet for IBDs?

nahhan12

I have UC so I'm in the same boat to a degree. I was diagnosed in 2005 when I was 18. I'm on Apriso (similar to asacol) and recently thought I'd have to be put on steroids because I've been flaring since March but thankfully my doctor let me try something else first and it seems to be working.
For me food isn't too much of an issue, but I definitely avoid soda, alcohol, and anything with artificial sweeteners because those things tend to make me bloat up and have a lot of gas pain. As far as exercising goes, I try to do a little of something every day even if I'm feeling anemic or super tired. If I'm in the middle of working out and get cramps or have a "UC emergency" then I just take a long break or call it good for the day.
There aren't many support sites out there that I like so it's nice to see other IBD'ers on here! Since I was diagnosed I've lost 30 pounds, so don't let yourself think losing weight isn't possible with Crohn's or Colitis.
: )

Happyoceangirl

There aren't many support sites out there that I like so it's nice to see other IBD'ers on here! Since I was diagnosed I've lost 30 pounds, so don't let yourself think losing weight isn't possible with Crohn's or Colitis.
: )

I agree!!! It iS nice to find other folks here - and i like the energy and attitude of MFP - it's so positive. Some of the other support sites don't do too much for me. Also, my loss has been since being dx too... it IS possible! I love feeling healthy strong and fit - and it's so encouraging to see other IBD'ers on the path to wellness also. :flowerforyou:

Allie_Dreams

I agree smiles

deathbycanon

Hi all! I'm bumping this post back up to the top. I just joined up. I found MFP while looking for an easy calorie tracker for my husband. The tracker is so cool and such a great way for me to track the foods I eat that I decided to join myself. I have very severe Crohn's. Non steroid responsive, so I'm one of those rare people that steroids do nothing for the Crohn's at all, so the side effects end up out weighting the benefits. I'm also allergic to about half the drugs you can take to control it. Right now I'm doing cimzia and methotrexate and it seems to be working better. Starting to gain weight but still under what I should be. Iron and red blood cell count is finally on the rise, I might hit a HGL of 10 in the next couple months! It's been almost three years since it has been above 9. I was on steroids forever and still very sick - when they finally decided to take me off them and not try them anymore it was to late and osteoporosis had already set in. All you people taking steroids get your vit D and calcium in!!!! I'm 5'6" my lowest weight was 103 my highest - on steroids but still sick was 140, now I'm at about 114 and trying to gain at least another 5.

Glad to see other crohnies here. I gave an into and no one even replied. No one wants to talk to the skinny chick. I would trade places with any of them though just to take my kids to the park and not have to worry about crapping myself while I'm there. I guess you can't relate until you live it.

leilaphoenix

Hi Everyone,

I'm another Crohn's sufferer. It does make dieting harder because a lot of the "healthy" foods are not good for us. I actually have a letter from my consultant telling me to eat more chocolate - I should get it framed.

I was diagnosed at 21 and nearly 24 now. I've learned to deal with it quite well and find that avoiding the super-fiber foods seems to keep me fairly well balanced.

x