Ooops, I forgot to add that I am 21, I was diagnosed with UC at 16, and I have had the pouch for 2 years now!

Thank you,

Natalie

Hi Natalie, welcome!

My first thought is that you may have pouchitis. Pouchitis can have a variety of symptoms, some of which can be pretty vague, but the urgency, getting up frequently in the night and the aching in the lower abdominal area do sound like pouchitis symptoms and therefore pouchitis would need to be ruled out. Not to mention, it's best to treat pouchitis sooner rather than later, as a simmering case can become worse if left alone. I know it may be difficult to see a doctor since you are away from your regular physician (I assume you had your surgery in the UK), but you do need to find a gastro who is familiar with pouch issues and go from there. A GP would not be ideal as most of them have limited (if any) knowledge on the pouch, but if you cannot find anyone else, you may need to see a GP first who can then refer you to a GI.

Best of luck!

There are some good colorectal surgeons and GIs in Texas. Maybe establish a relationship with one so you can get on antibiotics and see if that fixes possibl pouchitis.

Thank you both for the reply! I have had pouchitis before, but usually I get bleeding and an inflamed feeling in the pouch...if you can relate to that. But as you said, there are a variety of symptoms and each time can be different.

I found a anal/rectal doctor almost a year ago, but I haven't seen him since. He was very familiar with pouches, though. The one thing I didn't like, however, was that he wanted to look inside the pouch there and then when I met him. Only one other doctor got me to do that while in the doctors room and I swore never to do it again because I am always afraid that my pouch would leak (to put it nicely lol).

Yes, I had both my surgeries in the the UK. I haven't considered seeing a GP, or a family doctor as they call it here, because in my experience they are clueless beyond general medicine. I even had one try to diagnose me with appendicitis while I had my ileostomy. I didn't like telling her that since I have no colon I don't have an appendix.

I am thinking that since it's a Friday I won't be able to see any specialist doctor until Monday? I'm not that familiar with how the health care/doctors appointments work here...


Have a great weekend!

Natalie

I went to MD Anderson in Houston. I personally hated them but they are good and have very good experienced jpouch surgeons. Getting in is a royal pain in the arse though.

Most doctors don't see people on weekends, there are some out there though. If you can go into a urgent care and ask for a script, some might if you can convince them you need it. I did that for a bladder issue once in some small town when passing by.

I have the same symptoms that you describe with the frequency and aching and it ends up being pouchitis. I usually have my gastroenterologist fill my prescriptions, but there have been times that he isn't available & I have used my family physician to get me a new script. My family doctor might be limited in his knowledge of my pouch, but would do anything to help me if I needed it. This is exactly why this forum is so important as it gives you knowledge so that you can participate in your own treatment. Hope you find relief soon!

Vanessavy - I am sure I'll live through the pain during the weekend. I am glad to have the option of urgent care here as things like that aren't that great back home. Or at least they are very limited. The only up side is that you don't need health insurance for anything, but thankfully I have it here!

tbraz - thank you! I just hope it is something as easy to treat as pouchistis. I've never had this awful pain in my rectum before. It hurts to empty the pouch so bad! Out of curiosity, which antibiotics or drugs is giving for pouchitis here? Usually I get both ciprofloxacin and metronidazole, but maybe they have different names out here (same drug though). I hate both, they make me nauseous constantly, but they do work.

My most common pouchitis symptoms are rectal pressure, increased urgency, and nighttime leaks/accidents.

If the rectal area is bleeding, and feels more inflamed/painful vs just rectal pressure, I'd consider possible cuffitis.

Cipro works ok for me but I take a stronger one that is the best called Omnicef, not sure what the generic name is. I love this antibiotic and it is a favorite at the BCIR program ostomy nurses. I don't get pouchitis, I get small intestine bacteria overgrowth that re occurs

Sorry I haven't replied lately, I just started a new semester and I have been crazy busy. I haven't seen a doctor yet because as an international student I have limited amount of time I can miss class or I risk losing my status in the country. I have been trying to get an appointment after class but they close at 5PM. I have only had one really bad day, the rest moderate, but the last day or two it's been more or less normal, but I know from experience that it doesn't mean the inflammation, or whatever is going on, has gone.
Here's a question for the women: have you ever missed your period because of pouchitis? I am 100% sure I'm not pregnant.
My body is all over the place right now, but hopefully I can get an appointment with a doctor soon.
Thank you all for your help, I really appreciate it and it's great to be connected with people going through the same again.

Hope everyone is having a good labor day weekend!

Natalie