My introduction to Crohn's includes a resection...

Hello everyone. My name's Adam, I'm 28 and I may or may not have Crohn's.

About 6 or so months ago I started having stomach issues, gas, bloating, abdominal pain and general discomfort. It lasted for some time on and off through a particularly stressful time in my life. It ended up in an acute abdominal pain accompanied but weight loss (from 156 to 132) and nausea.

In march I was admitted to the ER for having a severe infection and I had an abscess aspirated. I was in 3 days, discharged, and things seemed to almost go back to normal. I ended up having a urinary tract infection after I got off the meds.

I went back into the hospital because I was still having abdominal pains after I had the urinary tract infection and something was noticed on an ultrasound, which a CT confirmed was the abscess again, bigger this time. I had a drain installed (last weekend of April). I kept draining from it at it turns out through an abscessogram that it is indeed a fistula.

Now I am being told my only remedy is surgery, and it does scare me. I just wonder if anyone else may have had a similar introduction. They can't even tell me for sure it's Crohn's till they preform a biopsy on it (could not do because of the fistula).

Thanks for reading my story so far.

Hi Adam
and welcome

Sorry can't help you with this one, but lots of people on here can advise you and we can offer you lots of support too whether you've got a Crohnie dx or not!
glad you found us
lotsa luv
Joan xxx

Welcome!!

I can't help either as I haven't had to have surgery yet. Though at this point, I think I would prefer it to what has been going on with me for the past year. Hopefully one of the others can help!

I was introduced to Crohn's because of an abscess as well. Though they kept me in the hospital for 12 days trying to figure out WHY I had the abscess. They did several CT scans and barium x-rays to figure out I had fistulas. They drained my abscess and put me on IV antibiotics while in the hospital and a 10 day supply of oral antibiotics. I immediately got referred to a GI who scheduled a colonoscopy a month later and was diagnosed with Crohn's officially 2 days later. In less than a week I was started on Humira to help with fistulas. I was never told surgery was my only option.

I wouldn't think just because you have fistulas means you have to get surgery over anything else, though I'm sure it depends on how bad of a case yours is (but it sounds like they haven't even given you scans or a scope to know how bad it is). Remicade, Humira, and Cimzia are supposed to target the treatment of strictures and fistulas. You should look into finding a GI who can start you on one of those. I felt immediate relief pain-wise with Humira. Though now I'm on Imuran on top of Humira because I had a bad flare that ended up in obstruction.

Surgery doesn't have to be your only option! Definitely get in touch with a GI who specializes in Crohn's. They will be able to tell you the best course of action. Good luck.

Hi Adam, seeing as you are not fully diagnosed when you have the surgery they should know. Having abcesses can be dangerous if they burst. I have had surgery 3 times the initial exploratory and appendix taken out and two resections. I was glad to have the 1st resection, what a relief. You are young and you will bounce back. I was on 1 week before and after of IV of antibiotics, not good to operate when infected. Take care, Welcome to the forum.

I can't help much in your situation. All I can offer is support and I hope that you find out soon what is causing your problems.

I was going under a Machine in the IVR (Interventional Radiology) department to monitor my abscess. They put a dye into the line used to aspirate the abscess and it showed up live time on the IVR machine as the die spread into my intestines. Is that the same kind of thing they did for you?

Anyway that thing helped us see the fistulas far better than a Ct scan. I went on liquid diet to see if they could close on their own. No go. Remicade and Humara have been used to help close fistulas without surgery if they are tiny.

Good luck!

I have no idea the size of the fistula, though I still have the drain inserted in me, have had it for 5 weeks.

I feel my GI is not really looking into this well enough. My GI said said she thinks it is Crohn's but won't diagnose me, or do the scope while I have the fistula. I feel like I am getting the run around. I had to learn about these drugs on my own.

I also feel the reason I am getting this treatment as I am uninsured. I became sicks a few months before I would have become eligible for insurance, and my my job is not covered under the Family Medical Leave Act.

My energy level is pathetic and my appetite is basically non-existant. I drink 3 boost nutritional drinks a day and usually eat 1 meal, maybe 2.

The Fistula I have is between my intestines and my colon, I don't know if drugs will help, but I want to try.

Thank you all so much for the warm reception. I feel welcome and comforted already.