Total Colectomy with Ileal Anal pouch

Wow, you have been through a rough time to say the least. You don't have UC (right?) but still have most of the symptoms. Sucks.

I did not have a good time on 6mp which is a relative of Imuran (no hair loss however) and I suspect it is behind several squamous skin cancers that were no fun at all in surgical removal, plus a MRSA infection from the last one.

Have you been to the forums where people who've had your surgery can give suggestions?
Seems they would be more knowledgeable about slowing down transit time, etc.
Have you tried adding psyllium fiber?

Have you ever tried diet modification?
Meds never worked for me and it took several tries at diet mod. before I found what works for me but it solved urgency, diarrhea, waking up at night, all the bad symptoms went away (not overnight).

There are many other alternatives you can read about here: cigarette smoking, medical marijuana, LDN, fecal transplant, wild oregano oil (woo). Stay up and read all night and decide which you want to try first.

Best wishes.

Jen, I am so sorry to hear this but you are not alone from what I hear.

If you don't have a colon what would those meds do for you?

Btw, I had my kid at 38, get better, it is not too late. But it will add to your stress! ;-)

Thank you all for your response!

I have had 4 different GI doctors... I have modified my diet and I do keep a journal with GI Buddy that I track all of my bowel movements, foods eaten and meds taken.

about a month ago I had a perianal abscess drained and the surgeon that did that procedure suggested but couldn't say for sure that I have colitis in my the remaining 4-6 inches of rectum. I have never been told that I have crohns but my grandma and my uncle both have crohns and I have a cousin that just underwent a total colectomy but she has had 6 surgeries in the span of a month and just had a skin graft to replace the skin on her stomach wound, which failed so will have to repeat.

I live in MT and we have two hospitals and I've been to both. I'm one of the patients that the dr.'s don't like and I get that feeling when I see them. I know they want to help and get frustrated when nothing works. I do too! I have spent $1000's of dollars on meds and appt.'s. Most recently for the budesonide which cost $700.

I will see if I can find a forum with others that have had total colectomies.

Thank you!

Whoa.......you have 4 to 6 inches of rectum left??? You should only have like 2 cm. of rectum left with this procedure. Did I read that right? And you have Crohn's in your family. I think its time to make a trip to a city where they see more of problem cases.....I guess outside of MT. I understand this is inconvenient but nothing is more important than your health.

Jpouch.org is also a great forum. I hope you can get some help. This can be fixable!

Thank you for your insight! I do feel that original diagnosis never seemed quite right and surgery was basically an emergency and I didn't have insurance at that time.

It's 4-6 something, inches does seem like an awful lot but that's what I understood from the diagram that the dr gave me.

I have thought about going to Mayo clinic before. I don't want to make my doctors any more frustrated with me though by asking for a referral if I need one.

First of all, I would recommend reposting this question on j-pouch.org. Most of the people who post here do not have j-pouches so it is a lot more speculation than anything else, whereas (unfortunately) on j-pouch.org there are posters who actually have symptoms similar to yours (or have in the past).

You absolutely have to get yourself to a doctor outside of MT. There just aren't enough UC patients or j-pouchers in Montana for the hospitals and doctors there to manage a complex case like yours. Mayo Clinic Minnesota (NOT Arizona), UCSF, Cleveland Clinic, and Mt Sinai or Cornell in NYC are probably the best centers for j-pouch, with Cleveland being #1 for problem pouches. The GI who specializes in problem j-pouches at Cleveland Clinic is named Bo Shen. It sounds like you are already spending a lot of money on questionable treatment near your home... if I were you I would call Cleveland Clinic first thing tomorrow and get an appointment with Dr Shen ASAP.

Have you ever been evaluated for pouchitis? Have you ever taken antibiotics to improve your pouch function, such as Cipro or Flagyl? Has your doctor checked for small bowel inflammation (e.g. contrast CT scan)? Are your symptoms better when you're on budesonide and Canasa or have they not helped you?

My main concern with the Imuran is not the cancer risk (honestly you are probably at a higher cancer risk simply due to the fact that you have uncontrolled inflammation and malnutrition) but that it takes at least three months to start making a difference. That's a long time to live with 20 bowel movements per day and nightly incontinence.

Where is the stricture and what has your doctor done to treat it?

Pluot said...

You absolutely have to get yourself to a doctor outside of MT. There just aren't enough UC patients or j-pouchers in Montana for the hospitals and doctors there to manage a complex case like yours.

I agree with Pluot on this but you need to be asking a specialist who is capable of running tests & examining you and having the knowledge with the experience to treat you correctly to improve your symptoms.

Asking people on an Internet Forum is only going to get you speculative answers which isn't much more help than what your current doctor is doing for you. I don't think you should be concerned about what your current doctor thinks about a 2nd opinion at a specialist especially if you are suffering; I'm sure your are not the first patient of the doctor's who needed a 2nd opinion.... If their is a problem with your doctor's feelings about getting a 2nd opinion then it's a sign that it's time to switch doctors.

I really appreciate all of your feed back!

Everything that's been said makes so much since and I've talked to my husband and as soon as we can make it happen we will take a trip to mayo.

I have been telling my dr.'s for so long that something is wrong and even questioned my surgery and that maybe something was done wrong, but my last doctor said everything was done right and she even said "all of these medications work for everyone but you!" She has really made me feel as if I'm the only one that issues.

Up until a few weeks ago, I had no idea these forums existed. I am so thankful for the feedback and advice!

Sorry, but with a stricture and perianal abscess, I'm thinking Crohn's. Maybe the long rectal cuff isn't helping matters, but strictures and perianal disease are features of Crohn's rather than UC.

You are absolutely entitled to seek a second opinion and in fact should. I'd get an appointment with the Mayo clinic ASAP. Best of luck.