Hey everyone!
Time goes by SO FAST...it really does. I have had the best intentions of updating my last post and then life happens...EVERY.SINGLE.DAY!
As I approach a year from my takedown, I have a lot to share...
If any of you have read my posts, you know that I call myself a 1%-er...meaning that if something is going to happen to 1% of people, it will be me (minus winning the lottery of course).
As it goes, my takedown was March 30, 2016. The surgery was expected to be quick and uneventful. I had read and read and read prior to going in, so I knew what to expect. I would heal from the inside out, blah blah blah, the pouch would be hard at first and then everything would be amazing. Right?
Oh so wrong....I woke up in recovery with 3 trochar sites (the places they make the little incisions for the scopes to go in), an abdominal drain, and about
a 4-5 inch vertical scar to the right of my navel (belly button). So, naturally, my first question was...WHAT THE HELL HAPPENED? Apparently, I had lost so much weight and was so small, they had trouble getting the ileostomy back in and closing from the inside out was not an option. There was a hernia that needed to be repaired also, but when the ileostomy cannot be left to close from the inside out, a drain needs to be inserted so fluid can escape and infection avoided. The long vertical incision was how they ended up having to close the ileostomy site, however, when they closed the site, my belly button was on the right side of my abdomen, so they had to call in plastics to fix it and essentially they sutured my skin to my abdominal wall so I would look somewhat normal.
Okay, fair enough. My plan was to stay in the hospital for probably more than 3 days from the beginning. The same drill...no food, clear liquids, solid food, etc. By day 2 I thought I was beating the system. I could control my pouch, I was thinking to myself, "I must be Wonder Woman or something because all those nightmares of new pouches I read about
aren't really applying to me here." I even told my surgeon, I had no "accidents" and was controlling everything fine. Then it happened. Day 2. I starting vomiting profusely...like 1/2 to 1 L in a bag. It felt like battery acid in my throat. I told my nurse who promptly medicated me so I was in a coma like state writhing in pain from the burning in my throat all night. By the morning, I had pretty much spun my head around and told them if they didn't call my surgeon and get a darn tube down my nose/throat I would do it myself! Back down it goes, my NGT, which felt like heaven on earth as they sucked over 2 liters out of my stomach in a few minutes. I had an ileus. An ileus is when your bowels decide to just lock up...done, no movement, no motion. It must have been my lucky day because an ileus usually does not develop until 3 days post-op.
No food, NGT back in until my small intestine decides to start working again. Not at all what I expected. Once my small intestine woke up, I fully understood what it was like to have a new, functioning j-pouch. There are no words to describe a new j-pouch. Remember the battery acid in the throat thing? Well, now that battery acid is moving on through. You literally cannot have enough creams, lotions, or potions. Use them...ALL OF THEM! I found the ILEX to work the best for protection and the Calmoseptine to soothe some of the burn. Accidents? Oh yes, plenty of them.
I finally went home after a week. The next two weeks at home were complete misery! I became obsessed with reading blogs and forums. I knew something wasn't right. It just wasn't. The agony, the burning, the wretching, etc., I had it all. By the time I went to see my surgeon, I was confident I knew what the problem was...pouchitis. I was right by the way. As soon as he gave my Cipro, it was like a miracle had washed over me. The point of telling you this is so you don't wait if you are misery, it may be pouchitis.
Very quickly after the pouchitis was treated, I learned to control my pouch. Unfortunately since then, I have been dealing with pouchitis continuously. I will say it is not as bad as having UC, it is manageable. It really is more of a nuisance and uncomfortable. I have just been on Cipro mostly, but will rotate through others including Xifaxin, Augmentin, and others.
I tried to take VSL#3 but it caused so much gas it wasn't worth it to me. Since then, my GI doc has added EnteraGam and when taken together with VSL#3 it doesn't seem to cause the excessive gas issue. If I am giving full disclosure here, I really haven't stuck to a strict diet. I have read from others on here and other sites that often time pouchitis can be cured by eliminating carbs, sugar, etc. I am going to try though because now I have recently had some bleeding from the pouch, which may be a simple hemorrhoid or small tear, but I know I can do better.
The one thing I can say for sure, is that after all of this...I wouldn't have changed a thing and I would do it all over again. My quality of life is so much better without UC!
Please don't ever hesitate to ask me anything. I'm no expert, but I've been through it all it seems.
I hope this helps!
Post Edited (losingtheucbattle) : 3/6/2017 12:18:10 PM (GMT-7)