Anyone familiar with Chrons or Ulcerative Colitis

[Steely]

My sister had Chrons - or Chrons like symptoms for most of her life starting around the age of 19. Now it seems Matt either has that or an eating disorder. I remember my sister's diet, and it was SO regimented. She basically had to whittle her diet to an AS diet, with no gluten, dairy, etc.. etc. Still she had flare ups where she had to be in the hospital or go to the emergency clinic to get an IV for fluids. God I can only pray this is not the same for Matt - because I don't think I can take one more thing with him. (UGH)

Anyway - if any of you have experience I would love to hear what worked. Matt does not seem to have diarrhea (that he has mentioned), just a lack of appetite, and feeling sick from eating most foods, terrible night sweats, and he lost 40 lbs in the last 4 months. Only bland foods don't make him sick. Due to his anxiety about doctors we are troubleshooting one thing at a time. He had blood work taken for thyroid problems first. In the meantime if any of you have helpful info it would be much appreciated.

 

[BusynMember]

My brother struggled with Crohn's since he was ten years old and he is now 53. I believe Crohn's includes a lot of diarrhea, bleeding, and fever. He also vomited a lot. He was stick skinny and looked white. The symptoms you are describing don't sound like Crohn's to me. Of course, I'm not a gastro man. I am thinking maybe it is something like GERD (gastric reflux) which causes nausea, lack of appetite, gas and fatigue. That is far easier to treat than Crohn's too. I have it...my gastro man told me there is really no diet for it. For that matter, there is no diet for Crohn's for my brother unless he has a flare up. He goes to top doctors (he has always had excellent insurance and makes a lot of money) and was told that he should judge for himself what he can and can not eat, but that dairy can kick it up.

I hope you can get his symptoms under control so that you don't have to take him to a doctor. Any anxious person can develop stomach problems. I had irritable bowel syndrome at one time (not fun), but this does not sound like that either. Sounds more upper GI. It could also be an ulcer. in my opinion, if he isn't better soon, you really have no choice but to take him to a doctor...and have tests run...I hope it does not come to that. Has he tried a simple bland diet? Whenver my stomach acts up, that is the first thing I am told to do. You can google up a bland diet. It's not that tasty, but it's easy for the stomach to digest the foods.

 

[gcvmom]

My difficult child 1 was diagnosis'd with Crohn's about 6 years ago, and at the time he wasn't even on the charts for weight and was maybe in the 5th percentile for height -- and he looked it. He was VERY thin and looked VERY sick by the time we got the official diagnosis after many tests and procedures. We learned he had a partial obstruction and he's very lucky to have avoided surgery for a bowel resection because he still has scar tissue in that area.

That said, we got him on a medication that has gotten him into remission and it took about a year to reach that point. He has since gained back all the weight, all the height and is on track for someone his age. Although the medication he takes is considered an immune suppressant, what it's done for him is to calm down an over-reactive immune system. He doesn't get sick very often at all -- maybe one or two colds a year. So despite all the warning labels for his medication and all the side effects that CAN go with it, it has served him VERY well and allowed him to grow and thrive. He does not have to modify his diet, though he tries to steer clear of popcorn and pineapple -- but that's about it.

We'll probably take him off the drug once he's done growing to see if he can remain stable on his own for a time. Some people are able to, and I figure it's worth trying once. If it doesn't work, then he'll know and can just go back on the medication.

Good luck!

 

[DaisyFace]

A co-worker of mine struggled with Crohns...

Here's what I learned:

It's genetic. So if your sister has it - odds are good that Matt has it as well.

The inflammation can occur anywhere in the digestive system - from the lips to the tail end.

My co-worker was on a regimen of streroids - which seemed to help her immensely with the Crohns...but also kept her constantly "amped up". However, given the choice being "amped up" and "flare up" - she'd choose the "amped up" any day.

I don't remember her being able to control flare-ups with food...other than constantly nibbling small amounts during the day to avoid becoming "empty".

It's a tough, tough condition to live with...


I hope that if Matt really does have Crohns, they are able to get it under control for him quickly...

 

[susiestar]

Crohn's is an autoimmune disorder and can be very difficult. there are medications that help, and controlling your diet is HUGE to controlling it, far as I have seen. I have IBS and the gut doctor thinks that it may end up as Crohn's but isn't there yet. There are months when I HATE the bathroom and all that happens there.

Matt NEEDS to start keeping track of every single thing that goes into his mouth. Food, liquid, medications, tobacco, pot, ALL of it. What it is, when, how much, even what temperature it is. Then he can start to figure out his triggers. The friend I have found that the more processed it was, the more her body loathed it. NOT a lot of fun hwne you are 16-18 and going out for lunch every day, Know what I mean??

Fatty/fried foods will be some of the hardest. There are recommended diets that can help.

He also NEEDS to be scoped and to be tested for celiac disease and food allergies/sensitivities.

It can be managed, and medications to suppress immune function may be needed at some time. The mouth diary (would call it food, but it needs more than just that) will be a huge help in finding his triggers. He should check out a crohn's diet and I thnk there is a support group online for people with crohn's. He will get a lot of help there too.

Part of living with a chronic condition is learning to make informed choices. Is having this candy bar/hamburger/funnel cake worth the cramps/bloating/whatever that will happen? If yes, eat the item. If no? Don't eat it.

Only he can make these choices, which hoovers for us moms because we hate to see them miserable.

 

[gcvmom]

Forgot to mention that difficult child 1 DID have to go on a course of steriods for about 8 weeks to get the initial inflammation under control. He was able to wean slowly off it as we added the immunomodulator, and that's where we are today.