Any advice on this vicious cycle?

[hojinkorea]

Hello!

I'm a newbie to this forum.. I was diagnosed with Crohn's Disease in May 2015. I was suffering with abdominal pain for two months before I was diagnosed.. I thought I was just having many many bad days with stomach pain but one day, the pain was so excruciating and I decided to go to ER. Was hospitalized for about a week, did alot of testing and colonoscopy. The result came back that I have Crohn's; inflammation in terminal ileum was the problem they said in May.

Since then, I have been hospitalized two additional times for same problem: partial obstruction. My last admission to hospital was three weeks ago and i stayed for five days. Since May, I have lost about 30 pounds.. I was about 145 pounds before all this happened and now I'm down to about 115..

The problem Ive been having is this vicious cycle I can't break. fortunately, I don't have severe diarrhea like some people with Crohn's disease have but for me, my main problem is gas/bloating with small bowel distension. Before I started taking prednisone and Pentasa, everytime I have distension, I would have excruciating pain but now, I would just feel my small bowel enlarge (I can actually see it and it really bothers me!). It would get large, make this grumbling noise and then it would go away for a few minutes, and then it would start again.. During the day, I can't release gas and at night, I would have to put myself in this yoga position I learned to relieve discomfort.. But next morning comes, I feel alot better but as soon as I have my usual morning bowel movement, this cycle begins again..

Anybody have similar problems?? And anybody have any suggestions??
I called my doctor this morning to see if he can send me any additional medicine to my pharmacy to stop this flare-up like symptoms but he hasn't gotten back to me yet...
Please help!

 

[scottsma]

Hello and welcome,Luckily I don't have that problem,but I'm sure someone will be along soon who can help.I have read about it on some threads so you are not alone.I hope your Doctor gets in touch soon,there will be something that can help you, I'm sure.

 

[hojinkorea]

Thanks for the reply.. I too hope that my doc gets back to me soon. Last time i was hospitalized, they gave me bunch of antibiotic and stronger dosage of steroid but at home, I know things i can do to improve my current symptom is limited.
Hopefully, i get to see what others say if they are struggling with same thing as I do

 

[jecoll]

Yeah I have that same "visible" enlarging that comes and goes. Mine is coupled with some slight pressure, and it'll build and then release along with some noises to go with it. Fortunately, it doesn't hurt that much, just kind of a pressure. So I've just attributed it to some food passing through some scar tissue I have in my lower-right abdomen.

I've noticed some foods cause it more than others, so you may want to think about doing a food diary. I don't know where your Crohn's is along your digestive tract, but you can guess whatever you eat, it'll probably be in your small bowel around 6 - 8 hours after, give or take. You can start figuring out what causes the noises that way.

 

[hojinkorea]

Mine is in terminal ileum.. My GI doctor prescribed me two antibiotics and now I feel much better. Almost no sound and no visible enlargement. Hopefully it stays this way and lets me go into remission

 

[DEmberton]

Yes. Mine would visibly swell up for a few seconds and then go down again with a huge gurgle. Quite entertaining really. Exactly the same from the sound of it: felt much better in the morning, but would then get worse through the day, and never had a lot of diarrhoea so never thought it was Crohns.

Sounds like the drugs are working for you, so hopefully it'll stay that way. For me the answer was surgery.