New Diagnosis??

Good morning,

My name is Lori W. I joined this site about 19 years ago when I first had surgery. I have not been a regular visitor, because I have not had any significant issues regarding my surgery until now. So, I thought I would reach out to see if anyone has experienced what I am going through now.

I am 54 years old. I was diagnosed with UC in 1997 and treated with medication for 3 years. I had a total colectomy with a J-Pouch in March 2000. I have had a few bouts of pouchitis over the years and one anal abscess, the developed a fissure, so I had corrective surgery for that. I had one hernia on my scar in 2012 and surgery corrected that. Otherwise, I have been relatively healthy.

Since August, I have been off and on with issues of pouchitis. I have been on Cipro 500 mg 2x a day and Flagyl 500 mg 3x a day 3 times now. I had a CT scan about a month ago that was clear...no evidence of colitis, crohns or cancer. Symptoms continued when I stopped the medication last week. I had a flexsig in the office yesterday and the doctor took multiple biopsies, to see what is going on. Basically, what he is saying, is that it's possible I have now developed either crohns, colitis or indeterminant colitis in my small intestines, above my pouch. He said my pouch was relatively clear. There was a small amount of inflammation still at the bottom of it. But he is most concerned over the inflammation in the small intestines, above my pouch.

I guess I am really just confused now. I thought that a diagnosis 20 years ago of UC and the removal of my colon "cured" that disease. I didn't know that it could come back in other forms in my small intestines or that I could suddenly get crohns now or anything else. I'm trying to remain positive and not jump to any conclusions at this time because I don't have definitive diagnosis yet. He said it would be a week to 10 days for the biopsy results. But when he started talking about going back to a gastro for treatment of UC or crohns again, my heart just fell to the floor. I have been so healthy for so long...I guess I just didn't know that this could happen. And quite frankly, at 54, I'm not sure I have the stamina to fight this ugly disease that I had 20 years ago. So, I'm feeling a little out of sorts and could use any information/advice/encouragement that anyone has to offer.

Sorry this is so long. I tried to keep it brief, but was unsuccessful.

Blessings,

Lori

1/8/1910:35 AM

❤️ 1

Original Post

Replies sorted oldest to newest

Scott FMember

Lori, I’m sorry you’re dealing with this. If this inflammation is limited to the area close to the J-pouch then it could simply be backwash ileitis, caused by stool sitting around in an organ poorly designed for the purpose. OTOH we are all prone to the same diseases we were prone to before surgery, and that certainly includes inflammatory diseases for most of us.

I couldn’t tell if you are perfectly well when on Cipro and Flagyl. If so, and the symptoms return only after you stop the medication, then it sounds like you may have simply developed chronic pouchitis (antibiotic dependent). If that’s the case then you would ideally try to find a few different antibiotic regimens that keep it under control, and rotate among them (at the lowest effective doses). Lots of us here do that quite successfully. I’d prefer not to be on antibiotics all the time, but it’s much better than pouchitis.

Good luck!

1/8/1912:50 PM

❤️ 1

Accept ItMember

Hi Lori,

I am 59 years old and have had my j pouch for 33 years. I began to have symptoms similar to yours. Was told by a colo- rectal surgeon that they did not have a test back then to rule out chrohn's disease and it could show up at any time. They do have a definite test for chrohn's now, which I will be having done in April when I see a gastroenterologist.

Hope this helps. Good luck!

1/8/191:28 PM

❤️ 1

Lori WMember

Thanks so much for the replies already. This all started back in August when an orthopedic doctor prescribed a medication called diclonafec for tendonitis in my knee. After about a week of being on that medication, my pouch was out of control. The doctor put me on cipro and flagyl for 2 weeks. I only took it for one week, because the flagyl makes me feel so bad and my symptoms had improved. By October, things were getting bad again. By Thanksgiving, I was miserable. So I went back to the surgeon on the Monday after Thanksgiving. Since then, we've been trying to get this cleared up.

As for the backwash ileitis, I've never heard of that. My doc basically just said the inflammation is above my pouch, in my small intestines.

After I completed a full 2 weeks on both cipro and flagyl and then two more weeks of just cipro (basically the whole month if December), I felt great and was optimistic...I finished the meds on Jan 1. By Jan 4, I was out of control again. So, that's where I am now.

I don't think that chronic pouchitis is the issue...my doc did say that only the very bottom of the pouch still had a small amount of inflammation. He's concerned about what's happening above the pouch.

Does the backwash ileitis occur above the pouch?

Thanks so much,

Lori

1/8/199:03 PM

❤️ 0

Scott FMember

Backwash ileitis is always above the pouch. It sounds like whatever you have is well-controlled by Cipro, but only while you’re taking it. I’ve been on Cipro for years, doing quite well. Maybe it doesn’t matter too much what your doctor calls it, as long as you are able to get it under control, and keep it that way.

1/8/199:28 PM

❤️ 0

Lori WMember

Agreed, Scott. I don't care what it's called either....just want it gone!!!

1/8/199:39 PM

❤️ 0