I very recently discovered this site and I'm so happy to have found this place! I would say..."you have no idea"...but I imagine most everyone here...does...
As this is my first post I will give a tiny amount of pertinent background concerning my current "issues".
I was diagnosed with stage one Colon Cancer in 2004. Within just a few hours of diagnosis...I was in emergency surgery where I had a partial resection then about a month and a half later...resection and j pouch (and Hysterectomy). I lived in a small town in south central Oklahoma and just kinda went on my way the best I could. I talked to my surgeon several times at follow up visits concerning diet/exercise/lifestyle/etc. He basically just said I'd have to kind of experiment and just what worked for me. OKAY...I felt kinda just "on my own". I pretty much just did my best/hoped for the best.
I have never been able to have the energy/efficiency/stamina I had pre 2004. At best...at times...maybe 60%.
For the past two years...I've just had so many problems. I have worked closely with my G.I. dr and surgeon. Neither of them has ever used the term "pouchitis". But after reading on here I think that's what I've been dealing with. Fairly chronically. The pain, bloating, diarrhea,(sometimes uncontrolled). Lomodal does NOTHING at these times. I basically just stay home a lot of the time. I am getting to where I see food as almost "the enemy" when feeling this way.
Also...almost worse than the pouchitis...is the Anemia. As recently as six weeks ago...when I went to my surgeon for a pre scope visit...he had to hospitalize me after doing blood work because my iron level was 7.8. I had to get blood transfusion. (2 bags) At that point...I couldn't walk upstairs hardly in my home and my heart was wildly racing at the littlest exertion. So after transfusion I prepped and did a colonoscopy (not really, cause it's just a tiny piece but that's what I say for lack of better term). I did have a few benign polyps. We did upper endoscopy and found polyps in stomach inside a hyedal hernia (please excuse if I spelled incorrectly). So my Dr didn't remove them but biopsied and they were benign. Im scheduled for a capsule endoscopy this coming Tuesday.
My most current labs (this week earlier) showed very low iron (8.2 and very low b12). My g.i. dr actually referred me to an Oncologist for the Anemia but I don't go till October 5th.
Last week after Id been reading on here about Pouchitis...I explained my reasoning about why I thought that might be something I was dealing with. He did prescribe an antibiotic and also Welchol. I do feel better after 4 days on the medicine as far as the pouchitis stuff.
However...I feel somewhat discouraged and like I'm really losing ground. Im still fairly young and I don't want to be sick all the time! This is all really having a huge effect on my ability to function. I have very little stamina. I cannot work out and exercise although now that it's becoming a bit cooler...Im walking a bit as I'm able. But this level to me is NOT acceptable. Fortunately...I do not have to be employeed as there is no way I could work like this. : O
It seems to my husband and I that we need to find and stop all bleeding! Then build iron from there. Im sorry. I forgot to mention that the way g.i. dr was treating anemia was with first iron pills. Then "iron therapy" in hospital setting thru iv. No help or effect even after 6 sessions. It's all well to try to improve my iron count but shouldn't we STOP bleeding? Seems kind of obvious? Maybe not?
I don't want to belabor all this...I am very open to fresh thoughts...ideas...feedback...lol...I was so so happy to discover this place!
I thank anyone who's had the patience to read all this and I apologize for such a lengthy post.
