J-pouch

Normal doctors don't know a thing about our pouches, so don't listen to him.

Do you still use a Gastroenterologist? If so, go see them. At the very least, they'll do far far far more than a PCP. Or even as your colorectal surgeon. PCP can't help much in this regard. 

Yes I certainly do. Although he has never offered showing me my pouch. When I had the pouch created I had to see my gastrointestinal doctor and even at that time he stated that I needed to eat at least 5000 calories to maintain my weight and recently when I was admitted early this year for weight loss of 50 lbs. being only 87 lbs. the doctors at that time said that i needed to do something with my pouch. Having a stoma again or revise if possible. 

I already met with the surgeon and he said i needed an updated pouchoscopy and had that done 10/31/18 and have not heard a word! I am not sure what to do. Should i call and ask, I don't want to be a nag. Nor do i want the reputation "Oh it's Leslie again what does she want now" Any advice what to do about the situation? 

What I can say is I am miserable with this thing, It hasn't worked since day one. I barely leave my house and good days are few far in between. The other day i had an appointment and the nurse said he changed the diagnosis to from colitis to Cr. disease. I asked when he came in the room and he said well it's from another doctor you saw here i was like what the F##K in my mind this does not make any sense at all.

From the very beginning i was diagnosed with Cr. but when i ended up here they said it was my thyroid and i should not have ever had the  total colectomy done and that I had a small amount of colitis no it's Cr. No wonder why i feel like shit most of the time. I am so tired of not feeling good its driving me insane. That's exactly what I told the doctor I cant do this anymore its been nonstop pain, getting infections all the time, missing out on things, not being able to work, and well my sex life is practically zero now. I told all this to the doctor now i to get a certain x-ray, do biofeedback 11 cycles, and Monometry. Question is why if I just want to get rid of this thing. They are now saying if I go back to the stoma i will have the same problem of not maintaining my weight and still pry have to do TPN, I disagree when I had the stoma i worked, could almost eat anything I wanted too, even have a glass of wine. Yes i didn't like it but my life quality was better but they do not think so Oh one more thing i was on zero medication. i'm really thinking of getting a second opinion but where I thought this was the best hospital around?

Scope exam results should be available shortly after the exam is done, but biopsy results take a few days.  I would definitely contact your doctor’s office for the results.  You may want to consider getting a comprehensive evaluation at a medical center that specializes in GI issues like Cleveland Clinic or Mayo Clinic, especially considering your weight loss.  While there, you should ask about options that would be appropriate for your condition (including non-surgical ones).  If surgery is recommended, your options could include J pouch revision, end ileostomy, K pouch and BCIR.

I was not given any discharge papers from 10/31/18. the receptionist said that the nurse called, but still want those papers i think it's weird that i was not given any. I don't care if it was lunchtime or not they are mine and I want them have asked again and nothing yet!

I just want my life back???? Is that to hard of a question for these doctors!

I would seek another Gastroenterology doctor in your area. When call to set up an appointment ask if this doctor handles clients with j-pouches. (Unfortunately, not all understand how a j pouch works.) It sounds like you keep getting the run around and it is not helping you at all.  

I would also continue to be the "squeaky wheel" with the doctor who ordered your scope.  First, it is ridiculous that they sent you home with no discharge papers at all.  Second, even if  you are waiting on a biopsy report, you should have heard the overall test results by now. 

I'm so sorry you are having so much trouble with both your pouch and with the medical community helping you.  Don't give up, yet. Keep fighting for the answers you need.

thank you

I feel that my husband is somewhat in denial about whats going on . I have always not trusted what people say in the medical field. But i'm telling you things have been very strange lately. Just like I said this is all true! I know it's hard for him to constantly going to doctors visits,procedures, ect., Its all we do. And I feel we are getting knowhere.

I not even sure I explained everything. After having a pouchoscopy on the j-pouch, the third counting back form the most recent of this year. Strange things were happening. My husband felt like I had a mini stroke. I all the sudden began to be very confused, not remembering where i had put things, not being able to hold and understand a adult conversation. Although things are improving a little i still have like "dumb moments". I never shared this with him but as we were coming home last night we had just got off the expressway and didn't know where i was for a split second. This is very scary to say the least!

Anyways shortly after the scope I went in to my follow-up visit with my gastro doctor and he said that I seemed very confused. To be honest It was the first appointment of the day, I got little sleep, and really only had time for a banana. To me it seems strange to me that a gastro doc would notice any neural logical problem and told me he didn't want to see me back until i had all the testing from this brain doctor. I thought It was strange but had all the testing MRI, EKG, Spinal Tap, and tons of Blood work even went to see a psychologist for several hours of testing Identifying things. After all the testing which i'm sure costed thousands everything showed up normal. from the beginning I was told it could be from being malnourished all my live to now not being to properly digest foods and a vitamin deficiency. that they said if its all it is the severe atrophy would come back but  takes a lot of work. But will come back. 

I really think this all happened from  the scope that was done, would that be possible?   This is when all of this confusion stuff started to happen. then  I thought it was the TPN, I discontinued the Entyvio thinking it was this because  it can cause PML a severe brain infection. I have done research after research from this and its not the TPN, could still be from Entyvio but was tested for that and it's negative. It has to be the scope and what happened in that room, I don't know cause was out. what I have come to is this place has all these interns all the time and who know while being under my doctor could have let one of the learning students work on me. Although i have noway to prove this happened and every time you have a pouchoscopy you sign a consent form although who knows what it reads they give to you when your in the procedure room right before they put you under. I think they should have you sign right when you get there for your procedure even before you undress.

I need a second opinion but who and need to get the hell out of this place before they truly kill me. And this place is supposed to be the best hospital and care in the state or even nation. like you said I getting the run around and for some reason stringing things like procedure after procedure with no result!

LJK

Entyvio can cause what your describing. I have it too. On my support group it’s very common, we just work thru it. It can take a while for it to get out of your system.