Leaky bowel?

Joan, I remember you posting about the Enteragam before. Sorry that it appears to be a failure. TPN is not a long term solution, but certainly can be a great rescue treatment. While it provides all the required nutrition for life, there is much in real food that we don't know the purpose or effect on our bodies. When I was on TPN and gaining weight, I felt fine generally, but not with my full energy levels I had when healthy. It takes months and months to rebuild that muscle tissue. 

Plus, from what you say, I am seeing some underlying depression in there. If it is not being addressed, it should be. I am not saying you should be happily skipping about, but clinical depression can be a real drain on the healing process. So much so, that your brain is unable to appreciate the small gains you make. 

I am not sure what yo make of this leaky bowel thing. There is a lot on the internet about it, but mostly in the alternative medicine group. I presume you've had a full upper GI evaluation to rule out Crohn's, celiac, etc.? Viewing the pouch is only a small part of the GI tract, and most of the nutrient absorbtion is in the rest of the small bowel. So, I am not convinced this is a primary pouch issue or that diversion would solve your problem. Cleveland Clinic or Mayo might be a good idea, since they would do a whole battery of diagnostics. But, if you've had them all, I just don't know. 

Hopefully someone will come along soon and give you some better advice. Just know I am thinking of you and hope you get some relief!

Jan

Echoing what Jan wrote, this doesn't seem likely to turn out to be a pouch issue, mostly. Did you have some (or all) of these symptoms before colectomy, even if at the time you thought they were caused by UC? In any case, I hope you get some energy back soon. Jan's point about the possibility of depression could certainly be part of that.

  --Scott

Thank you both for your responses and I am sorry it took me so long to acknowledge them. Interesting that my GI dr had the same thought that you both did--we need to move on from this recent surgery and look elsewhere for what is going on. I have been looked at every way possible and my surgeon has found no problems, no pouchitis nothing to indicate that the J-pouch surgery was not successful, technically. A lot of my friends have a hard time understanding how I can say that the surgery was successful in that my surgeon removed my diseased colon and did the procedure he was asked to do! Now for some reason my body is just not responding to all of this very well. At my last GI appt we went way back in my medical history; I had my gallbladder out 7 years ago, before I ever had the UC, and then shortly after the gallbladder removal I had a bout of SIBO and from that point on I have always said I was never the same. Given antibiotics but never thought it got be back to a normal functioning GI system. Eventually diagnosed with irritable bowel and then years later the UC. Then unsuccessful treatments and the surgery. My dr is wondering if my body never adjusted to digesting fats after losing my gallbladder but those symptoms just blended in with all the other symptoms I was having. He's right it is very hard for me to go back and try and separate one from the other now and even then, not having the benefit of foresight, didn't know first of all what SIBO was, what UC would feel like, I mean who knows? He is testing me for Celiacs again, this must be the third time, not sure why he is wanting that repeated but waiting for that to come back as he is doing the genetic test for that. 

Also having a rough time with this TPN this second time. Started it about a month or so ago and yes I have gained weight so I know that is the goal but I have been going downhill with my energy level. That was not expected and I know it was suggested that it might be depression. I have seen the nurse practitioner at the psychologist's office where I go and we have talked about the anti-depressant I am on and tweaked the dosage to no avail. I finally got a copy of my blood work from the home health nurse and she and I discussed that I should probably see my primary care dr. My platelets are low, in fact, dropped from one week to the next. Also my CO 2 level in my blood is low. There were several other things on there that I had to look up the acronyms for but she pointed out were not in the normal range and she thought that after several weeks of TPN they should be closer to normal. I actually told her last week that I felt out of breath and that my chest was heavy but she said my chest sounded fine. I knew I was feeling exhausted but I did think maybe it was depression and being overwhelmed with an upcoming move. But that is when I asked her to see if she could get me a copy of the blood work since she is drawing blood every Monday to send to the pharmacy before they mix my TPN. So that was just yesterday that we took a look at the results, which she said she can't explain but it is possible that some of the low values and some odd high values might be responsible for my fatigue. Fortunately I was able to get in to my dr this morning. This seems to be a never ending journey. Hoping he can explain or order some additional blood work to get this figured out. 

Thank you again for your opinions. I am sorry I have not posted. I have truly felt that bad and am making feeble attempts to clean out closets and get things ready to send to GoodWill.  Ugh. I need energy now. 

Thanks.   Joan