Evox23:
Unfortunately, I've had nothing but problems with absorption issues too since my valve re-do on my Kpouch in August. My health started rapidly declining (tired, low energy, low appetite, blood loss, painful intubation). I didn't know I was suffering from pouchitis (I was lucky to never have it after my 2008 colectemy). After the hospital regime of blood transfusion, Antibiotics, potassium, I seemed to be better. But I started slipping again in October & resumed & increased oral antibiotics & iron to no avail. Another hospital regime and carried on. Now after my third bout, I finally understand I will need antibiotics and IV iron infusions going forward. It was explained to me that small bowel surgeries affect the ileum - where the absorption of iron begins. So malabsorption is a big problem for many pouchers as we all know. To add insult to injury, something happened to my pouch/valve with my last hospital stay. I absolutely could not intubate, it would go through the valve and hit a 'wall'. I was in a hospital that had no clue about Kpouches, so I waited 14 hours without intubating before my GI could scope me. Appears something slipped, nearly at a 90 degree angle to not allow the tube to reach the pouch. It literally happened in a hour---I intubated fine at 2pm and at 3pm, it wouldn't go in- nothing to indicate something slipped? It took 14 hours for the hospital staff to determine what to do- no one wanted to touch this kpouch. Now I have a small catheter in (nothing like the waters catheter) to allow stool & air to empty in an ostomy bag. Rather than go to any surgeon around here who may or may not know what's going on, I'm going back to see Dr. Dietz (formerly of CC) at University Hospitals- he's the expert who created & fixed my kpouch. I fear this may require another surgery to fix, or he may tell me the kpouch isn't working for me. I just don't know. But I have painful twisting feelings in my pouch area all the time, and I cannot eat anything but soup or pasta given the in dwelling catheter is so small. But I am so thankful I have I can pass stool & air. Those 14 hours without intubating in the hospital were horrendous. I used this site to see if I could find anything on why I couldn't intubate and reread a lot of Sharon's posts, wondering if I did something or wasn't doing something. I love my kpouch and hope it can be saved. But more surgeries when I've had it less than 2 years worries me. I dread going back to the bag, but I will respect & follow whatever Dr. Dietz recommends. Sorry I digress, but I truly understand your plight of iron infusions to refill, as I am in the exact same boat. I have to check my tank too so if doesn't get too low. Now that I finally figured how to keep myself healthy, I'm hoping my kpouch can get back to functioning too. Thanks for your input- and letting me digress- always helps! Kara
PS- it was recommended I take B12 shots too; what can anyone tell me about them? Are they prefilled injections like Humira or Cimzia & do I inject them or my doctor? My GP said she would prescribe them, just curious of process? Thanks!