Community Forum

Hello my name is Kelly and I had total colectomy with a j-pouch surgery 4 years ago. I had reversal surgery 3 months after and have been okay until recently. I have had pouchitis 5 times and just recently had a scope and was told that I have UC again in my pouch and I will have to start on Remicade. I have never had Remicade before and am very discouraged that I am having to go through this again. My surgery was suppose to have taken care of this. A blood test was performed on me to determine if I would have colitis again post surgery and it was positive. I'm not sure what to do and wonder how this is going to affect my life. I have had very loose stool since surgery and after I eat, I go to the bathroom at least three to four times right after. A normal day is 10 to 12 times a day for me to go to the bathroom. I now have permanent "welts" now on my bottom and nothing is working. I just need some advise on where to go from here. If anyone has experienced anything of this nature, please email me or write me back on this site. Thanks.

 Reply posted for kelly0719.

Good luck with the Remicade.  I was on it for a while before surgery--it got me off of Prednisone for the first time.  It was good stuff--the hardest part was that it was an IV infusion.  I got to where I didn't mind it that much--I'd go and take a book and try to relax--I know it's hard.  It is good stuff, though.  I'm glad you've found the Calmoseptine--sorry that I couldn't give you any more help with that.  The only other thing I can tell you that I know you probably already know is that eating protein (eggs, soy, meat) will help with your healing, as will taking a multivitamin.  It's easy to get malnourished quickly.  Let me know what the doc says--good luck.

Ann

 Reply posted for hundleae.

Hi Ann and thanks so much for your response. I go to the drs. this week for a follow up from a scope two weeks ago. During my scope he found ulcers in my j pouch at the anastamosis area. He also stated that from the blood work it is UC again and not Crohns. He wants to start Remicade since I have been on most oral meds and nothing has worked.  As for the ointment for my bottom, its Calmoseptine and I use it every day. I still have permanent skin damage and it gets worse when its hot outside or when swimming, so I've spent most of my summer inside. He also mentioned a possible permanent bag if the Remicade does not work and I'm not sure what to think other than when I had the bag before, I could eat whatever and I had no pain at all (except if I ate hotdogs cuz they still come out whole!!!!) Anyways, take care and I will keep you posted on the results from dr. on Thursday.

Oh and YES I am angry cuz I only have my small intestine left and I'm not suppose to get UC again!!!!! Thanks for listening.

Kelly

 Reply posted for kelly0719.

Hi Kelly.  My name is Ann-- I had my colon removed in 2006 because I was (to borrow a phrase from alcoholics anonymous): sick and tired of being sick and tired.  I was a lot better for a while--though I was taking Imodium 6-8 times a day to keep myself continent.  I've had what they thought was pouchitis once and got better after a while.  2 weeks ago, though, I started with what felt exactly like a UC flare--and sure enough, after IV fluids in the hospital and a trip to my friendly neighborhood GI for a flexible sigmoidoscopy: IT'S A UC FLARE.  I don't know about you--but this makes me angry. I apparently have enough colon left that it can still get red and inflamed and ulcerated, and, less than 2 years after having my colon out, I'm back on prednisone.  I'm sad--scared a little, but mostly angry.  I know you are too.  Good luck--take care.  Some advice on the skin care part of it: after using the bathroom wipe with something wet rather than something dry.  Wipes they sell at the pharmacy will be good--look for the ones that say for incontinence (even though I know you're continent!) The other stuff that's FANTASTIC comes in a tiny jar--I can't for the life of me remember the brand name: but it has calamine lotion and menthol in it.  It will change your life.  Ask a pharmacist about what would be best for your bottom: there's nothing more miserable than skin breakdown there.  As for a fistula: it's a channel that wears away between the inside of your intestine and your skin.  You might have one but it sounds like your problem is more skin irritation from constant liquid stools.  Have your doctor look at your bottom next time you go in.  Take care--feel better--good luck.

 Reply posted for Terri911.

Thanks for your response Terri. I will look at the treatment section. Also what is a fitula? I'm not sure if I have that too.

Thanks,  Kelly

 Reply posted for kelly0719.

Kelly

I just posted a question on the Treatment page on pouchitis.

I get pouchitis about twice a year.  I take Flagyl or Cipro for 2 weeks and it clears right up.  I have never heard of UC in the pouch.  Scares me.

I also have a fistula near my rectum.  The wonderful life of UC!

Terri