20 yrs no surgery.stricture in ileum. pls help & ask whatever you like on how i stayed in remiss.

[Sir Peaches]

Diagnosed at 4, am now 23; been great up until about a year ago. hardcore gym goer (bodybuilding) and avid healthy eater

I am on cimzia (month 4, MAYBE 5 max). i have a stricture in my ileum (just under belly button). i was doing worst before cimzia, i had diarrhea about 4 times a day and couldn't eat too much;i had pain although no vomiting or blood or any of that.
NOW (typical day)- i wake up in the morning and have one bowel movement which is formed however sometimes thin (which could be because of the stricture). i then eat a good breakfast and then will work out, followed by another meal. things feel great up until about 5-6pm where i start to feel a fullness in my ileum (just under bellybutton). it will pump up and then sometimes growl and then go back down, during this it does hurt a bit. i understand that its the stricture and that food is trying to get through. after a few hours it passes and i feel ok. my question is even though i really feel like i am in remission, the stricture has caused scarring which MAY NOT be able to open anymore. i do have another shot in 2 weeks and am hoping that it will help with the opening of the stricture. can anyone else relate to this, if so what helped them? i take vitamins, one shot glass size of aloe vera and cimzia.
symptoms in a nutshell- feel great in am, after eating throughout day food has trouble going through or accumulation throughout day. i have normal bowel movements which makes me feel even more that im in remission...although the stricture is still giving issues! i know if it could just open A BIT more i would be ok. OH! AND ALSO, i am afraid that i am not absorbing nutrients fully...this could just be in my head but just a fear... i know its not the most organized post but as soon as someone responds i will post again with a response and answer any questions on how i stayed 20 years strong or if you have any info for me. thank you.

 

[nogutsnoglory]

Thanks for sharing your story. I'm glad Cimzia is helping you!

 

[worriedboy]

Hi there. Did your doctor manage to reach the stricturle during a colonoscopy ? Maybe you should ask him about a baloon dilation - it may help with the fibrotic stricture while the Cimzia is knocking off the inflammatory one .

Good luck. Hope it'll just keep getting better.

 

[Sir Peaches]

yea I've done every test possible from colonoscopy to the endograph to the ct scan that takes away all organs but what there looking at. I am very curious as to asking my doc about the balloon...is there anything bad about it besides it can cause perforation; which is pretty bad!

 

[shamrock15]

If the balloon is an option, it is worth considering. Strictures generally don't reduce on their own. I have had several dilatations for strictures in my rectum, and they have been successful. Also had one failed dilatation for my descending colon, but no perforation. Outside of the dilatation, you can get laproscopy for strictureplasties which might be an option, obviously far more invasive. Then, if it's bad enough, you could end up with resection. Good luck!

 

[If*]

Hello, is the 'stricture' inflammation or straight up scar tissue? From my simple understanding, inflammation is treatable with medications or bowel rest most often, however scar tissue will not respond to any medication and can require surgical intervention.

With strictures certain foods can get stuck and cause pain. Example: fruits with skins, mushrooms, high fiber cereals, grains, nuts, also popcorn/corn. A simple rule of thumb, if it doesn't break down easy it just might get stuck and cause pain, bloating and sometimes vomiting.

As for nutrients: B12 is absorbed in the ileum and even without removal B12 can be possibly low. Best to keep a eye on levels since they can drop. B12 IS important. Have you had it checked?

IBD can be very individual.

Take care