5 mos post take down surgery and have severe anal pain

Hello, so glad to find a group that could possibly help me.  A little history of my issues.  I had UC for approx 20 yrs, flares were getting worse, then random samples of dysplasia  was discovered and since my mom had colon cancer, I opted to have restorative proctocolectomy with an ileal pouch–anal anastomossis.  Surgery was done December '16.  I had major complications, such as illostomy didn't work, placement was wrong and appliance wouldn't stay without leaking, was flat on my back for six weeks ended up with a major burn wound due to biles.  It was a nightmare.  After take down, had the normal issues ended up on 8 Lomotil and 8 Imodium, had burning, itching, pain.  Long story short, the first surgeon didn't take enough of the rectum out and I still had UC in that portion of the rectum.  Needless to say my issues got really bad and it took me finding another Surgeon who did a scope and found the colitisin the rectum.  Referred back to my new GI doctor to see if the UC would respond to biologic medications to get under control.  The markers showed the inflammation did not respond the medication so I was referred back to my new surgeon.  It was decided that she needed to go in and do a repair to the ileal pouch-anal anastomossis.   Once again I would need the temporary illostomy, OMG I didn't want to go through that again, but I had no choice.  This was done Aug of '18.   It was a little better, but the stoma kept sinking back in causing leaking etc.  anyway finally after 8 weeks, my surgeon was ready to reverse the illostomy, done Oct. 25, '18.  So here we are five months later and I am in distress and need help.  Again after the surgery I was having issues, ended up on lomotil and immodium 8 each daily, questron powder for biles, fiber therapy.  After pain getting so bad reached out to my surgeon and she did a scope to see if pouchitis and in the mean time started me on Cipro.  My body didn't respond to the Cipro, so after scope they found I had excessive fecal matter in the pouch.  Taking the lomotil and immodium really slowed my system and I got backed up.  Back to my GI doctor, he told me he wants me off all the medication and my body should get back to my new "normal"  I was having severe incontinence, pain, burning itching and would be in tears everyday for hours.  I was scared of his advice, we decided on a slow taper.  This would eventually get rid of feces stuck in the pouch. He did tell me I would be miserable for a couple of months.  He told me my diet has nothing to do with my issues.  It was all due to the constipation.  So feeling like maybe an end in sight and getting better, I went home hopeful.  Of course I went drastic, and cut it right in half.  At first it was ok, some irritation but I could deal.  How I could tell (the doc told me) was my BM would be loose (not watery) again as mine were semi-formed which should never be with a pouch he told me.   Well its been approx a month feeling like the fecal matter should be gone by now, not really having the formed BM's, but the past two weeks I have been in severe distress.  The pain, the burning itching is constant, and I feel like a leaky faucet, imcomplete BMs, always going and the irritation is mostly on the inside (I use Zinc 40% for breakdown of skin on outter area),  It is affecting my life, when I am having these issues I can't do anything,  and it hurts so bad I am in tears for hours.  The bam, I will have a good day, no issues what so ever but starts again the next day.  My diet is the same, watching that to see if any triggers, but not really.  I just don't know how to get the burning and itching to stop and the leaky faucet, I am going the opposite way my GI doc wants and increasing the Lomotil and immodium again to stop the leakness because it hurts bad.  I have a follow up appt in two weeks, trying to get in sooner, but waiting on cancellation.  I need advice if anyone else has gone through this and can tell me what they did.  I am so regretting having these surgeries done, it has totally taken a toll on my life the last two years.  Please if anyone can help, I would greatly appreciate it.  Sorry if I rambled on!

Original Post
Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×