Surgery here I come (Updated over years, from UC to Jpouch to Healthy Ostomate)

Solomon - It sounds like you may have developed an ileus, i.e. temporary paralysis of the small bowel. Ileuses are common after abdominal surgery. I had one after my second surgery. Honestly, it was hell on earth for about 10 days. I was nauseous 24/7, in pain despite the painkillers, projectile vomited a couple of times a day, had absolutely no appetite whatsoever - even liquids were hard for me to get down. I went a week without really eating anything, then I started to absolutely force down a couple of slices of toast with marmite each morning. Knew I would never get out of that place unless I started eating something.

My appetite came back a bit more with each passing day after that. And once I was finally discharged, it came back quite quickly. Anyway, yeah. Hopefully you won't go through a week of that - even if it is an ileus it can resolve after just 1-2 days. It also won't have any long-term effect apart from delaying your recovery by a week or two.

Solomon - Ack that sucks, but ileuses are really common after abdominal surgery apparently. I must have been fairly lucky to have not got one after my first surgery.

The extra nutrition should help you recover more quickly. It's amazing how weak not eating for even a few days makes you. I remember the physiotherapist coming round one morning and trying to harry me out of bed. I somehow managed to get out of it and could barely walk. Got to the end of the ward and then could go no further - I sat down on the floor. I was half lifted, half dragged back up and frog-marched back to my bed. What proper annoyed me was the physiotherapist acting like I was doing it all on purpose. I read his notes later on and honestly felt like reporting him - there was talk about me needing to see a psychiatrist, and so on. I'd had major abdominal surgery and hadn't eaten or drunk more than about 500 calories in 5 or 6 days. What state did he expect me to be in?

Anyway, sorry, I went on a bit of a rant there <_<.

I pray that you get out of there soon. It's no fun being stuck in hospital; by about day 8 I would have jumped out of windows to get out of there.

I am sorry to hear it too. I am sure it's just going to take some time, but once you're feeling better, life will be so much better. You're so close!

Small update:

As always, my post-op is a nightmare. Some mishaps by hospital residents, but my attending's response was excellent and she made sure that things were made right. Dr. Ashburn has been amazing for us.

15 day hospital stay. Discharged at 117 lbs with low serum albumin, so I'm metabolically shot. That would be fine, if it weren't for that my stomach seems to have been wrecked by NG, NSAIDs, surgery, anesthesia, and whatever else stressed it. At the end of the long drive home I started feeling poorly. I got no sleep at night do to heartburn, belching, and indigestion pain and I threw up as dawn broke. I got a few things that I thought could stabilize my stomach, and right now I'm just trying to pick myself up, reduce my misery, and keep myself metabolically in the black (or at least not deep in the red). I expect a long, hard, but ultimately fulfilling recovery.

Surgery was the right decision. I have had a pocket of scarred tissue sepsis behind my pouch for 2 years which went ignored and undiagnosed until Shen found where it joined the pouch last summer (looking at a CT that many radiologists and colorectals did not read well enough). His fix may have worked for the surface, but behind the pouch this festering wound was still there, still causing me misery. My surgeon cleaned it out for good.

From day 1 I had three choices:
1 Suffer
2 Get a new jpouch
3 convert to permanent ileostomy.

I feel good about moving from option 1 to option 3. By skipping option 2, I will be truly safe from option 1.

One month out from surgery, 2 weeks from discharge. Improvement is slow, but I am now eating much better, thankfully. Gaining weight, pound by pound. Doing quite well with my pouching system. Laser hair removal treatment is having trouble tackling my thick, strong hair. I look forward to letting you know about how great I feel in a couple weeks.

HAPPY UPDATE (with a rough plot twist though):

Improvement was slow for a reason. They made the fascial opening for the stoma too narrow during my surgery, so I basically suffered for a partial obstruction for a very miserable two months until I demanded an MRI and subsequently was reoperated on a rather urgent basis. I immediately felt better and got off of pain killers mere days after surgery.

From there it has been only up. I am enjoying my health immensely, and although my stoma may still be a little "tight," I think my quality of life is pretty good and feel very little as far as limitations.

I am doing yoga (including planks!), running road races, and either sleeping through the night or getting up only once. I manage the challenges of my stoma well, and even though there will be minor issues, I figure it out.

I had a scare last week with an ulcer on my stoma and other symptoms, but despite my worries of IBD, it seems that I just injured myself as a result of physical activity.

Dr. Shen said that if I have two more ileoscopies year after year that are 100% clean like the last one in June (first clean scope since diagnosis 2013!) I can be called cured. I will update my initial post to reflect my journey.

I hope to update this thread to let you guys know that I'm still healthy.

iPoop said...
Thanks for checking in and it's great to hear that you are doing well, enjoying life, and doing lots! Seems like anything that could possibly go wrong did go wrong for a while there...totally unfair...

Absolutely. The next years will involve a lot of personal healing and growth from a very hard period of time.

notsosicklygirl said...
Thank you for the update. I am happy you've finally beat UC.

Reading that gave me chills. I'm waiting for the moment I'm able to fully appreciate that. It feels wholly miraculous. It will be an achievement to put on my tombstone, not my CV.

Updating a good two years later:
Life has it's challenges, but UC is no longer one of them. In some ways having an ostomy is a greater challenge mentally than it used to be and I do wish that I didn't have to go through colectomy those years ago. My quality of life is pretty great. I change my ostomy every 5-7 days, no problem. No pain.

I have started medical school in hopes of offering patients the support that I once required.

Glad you're doing well! Thanks for checking in!

Thank you for all the encouragement!

I'm not sure I can handle any more GI than I've already seen with my own body! I will only have to decide in three years, so I'll have time to think about my specialty.