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

good luck, good luck, good luck!!! I spend most of my time on the ostomy forum- stupid UC stole over a decade of life from me. Not now! I hope you have the most successful surgery possible- don't hesitate to post on the ostomy forum afterwards. It's amazingly reassuring & helpful. I think you will be extremely pleasantly surprised at how good you feel once your diseased colon is gone. And once you're off meds too! It's very liberating. Hang in there, only hours to go now.

Hey all.

I am alive. Surgery last Friday lasted 8+ hours. 2 stage thank goodness. Pathology is clean UC. My incisions seem to be OK and no sepsis.

I had a complication which was a blunder by the medical staff. No long term consequences, only lots of pain and extra hospital days. I will talk about it when I am a little past this.

Dealing with a lot of pain, nausea, cramping, GERD, and general GI distrress. That said things are objectively going very well. I am just fighting to stay sane and get out.

Hey all.

I got out December 31. I have now been home for about a week. I had a very rough time in the hospital, but everything looks good for the long term. I do not regret my decision at all, especially in light of the post-op pathology (I do still mourn the necessity of the making the choice I did). There was a tiny carcinoid tumor, and although they said that I really wasn't at risk of cancer at all, it nonetheless makes me wonder what further colon problems I will avoid. My appendix had fecal matter in it... indicating that over some scale of time I was going to be at risk of peritonitis and emergency colectomy. The colon was quite diseased. Pathology, done by a very skilled pathologist, declared clearly UC, which was reassuring given some fears of Crohn's in the past.

I developed a post-op ileus due to morphine which was ineffective. The first few days after the operation were really hell. Emotionally/psychologically I had no idea how difficult things could be, but I had a ton of family support to get me through. My stoma had high output at the beginning and a sterile fluid collection formed behind my pouch. It was drained, but has since reformed (albeit even smaller now). My team is now less concerned by it, knowing that it is sterile and believes that it will be absorbed over time.

The complications were painful and frightening, but they were not severe, thank goodness. Although I am dealing with pain and fatigue and I'm not a fan of the ostomy, things are much better in many ways. I do not experience any UC symptoms, really. That in itself is remarkable. Right now I am trying to be patient in recover, in every sense of the word. I'm having trouble connecting to the j-pouch forums, but hope that will resolve soon.

Thanks for the update. Seems like everyone has trouble with the temp ileo. I think it will get easier over time and before you know it you will be reconnected :)

Glad to hear you made it through the first step. My first surgery of the two step procedure is coming up on 1/20. Wish I was in your shoes now and already past the operation!

For anyone reading this, I would offer a few pieces of advice on the most difficult time period: 12hr to ~day 4 post-op period.

At the beginning, be very careful with diet and pain meds. If you are maxing out the pain management pump using morphine, STOP USING IT. Ask for Dilaudid. Note that the pain will significantly ramp up in the 24 hours after the operation as sedative fully wears off. Taking narcotic pain meds will slow down your bowels, and they brought mine to a halt. Find something that works for you!

Walk. It will suck. So much. Heck, lying down sucked. Burp. There is a ton of gas in you. I walked down the ward belching and stoma farting with no shame, turning all heads. And because of it, the gas pains subsided sooner. Walk as many laps as you can, resting as needed. It was so hard for me with my NG tube, Foley catheter, JP drain, wounds, and fresh ostomy, but with every step you benefit yourself.

Don't be afraid to socialize, especially if you're in a hospital with other IBD'ers.

Once the pain is OK and you are strong enough, you might appreciate emptying your ostomy and drains yourself. It'll reduce the number of times you have to see your PCT or nurse (if you like privacy like me) and they'll appreciate it.

Thanks for all the support, guys. :)

SolomonSeal said...
At the beginning, be very careful with diet and pain meds. If you are maxing out the pain management pump using morphine, STOP USING IT. Ask for Dilaudid. Note that the pain will significantly ramp up in the 24 hours after the operation as sedative fully wears off. Taking narcotic pain meds will slow down your bowels, and they brought mine to a halt. Find something that works for you!

Dilaudid slows the bowels just like morphine. Your best bet for pain management without slowing the bowels is Tylenol.

Glad you're doing well and I agree with the rest of your post-op advice :)

Thinking of you SS. If it is any comfort, you are through the worst. Take small amounts of food, then small amounts of water frequently throughout the day. Dehydration is frightfully easy with the darn loop. Don't ignore watery consistency for long.
Things here are really good. My D is packing for a long trip with friends, has been going out to exotic dinners(seriously, after plain rice and noodles, she is eating all kinds of stuff). Energy back, pain down. You are going to feel good again, but take it slowly. Ask at the Ostomy forum is you have appliance Q's.

SS - thanks for sharing details of your experience. Your strength is inspiring!
Wishing you steady, comfortable healing as you go through this next phase.

I really liked the "half-moom barrier strips" aka Coloplast Brava Barrier Strips. They worked so well that they were difficult to remove when I had to change my ostomy. Other manufactures make similar products.

With my Loop Ileo I wore an ostomy belt, it might help prolong your ostomy products with the issue around your belly button. The paste will also help.

SolomonSeal said...
If I can get 4 days of seal out of it, this will be my bag of choice. I'm also using the half moon brava barrier strips, they are great and I am looking forward to seeing how this bag performs with daily showers. I would be happy to be introduced of course. :)

The barrier strips are great but the only problem is they are really difficult to remove when you have to change your appliance.

Hey guys, I guess I'll update you.

Colectomy was the best decision I've made with my life and I do not regret it. February until now (takedown) has been one of the happiest periods of my life (despite being bored at home). I did very well with my stoma and gained weight/muscle.

Before takedown, I had some rectal bleeding. It turns out that my rectal cuff was/is inflamed. My surgeon said that this should resolve after takedown. Honestly, having felt so good with my ileo and being concerned about the rectal bleeding and urgency, I asked my surgeon about the possibility of permanent ileostomy. He said that I would be crazy not to try the pouch and convinced me to give it a year.

Takedown was 4/10. It is a much more difficult operation than people suggest, and right now I am not enjoying life with my j-pouch... I'm just waiting for the improvements to come. The part of me that was perpetually disappointed with UC thinks that the cuffitis is real and that I am going to be experiencing UC symptoms all over again.

If I could go back, I probably would have not bothered with the pouch and asked for a permanent ostomy. I wish I hadn't taken the risk on myself. That said, my surgeon is confident that my pouch will be normal. In any case surgery was the right decision and my life is getting on track... I'm only concerned that I'll have to do to the pouch what I did to my colon.

I worry about cuffitis too... actually, i went on a surgery consult with one doctor who leaves a bit of the cuff in tact, she said that gives you the least chance of having nerve damage. I like the idea of that but I don't like the idea of cuffitis. The other surgeonI want to consult with does a mucusectomy (i think this is what it's called - i am not a surgery expert so I can only absorb so much technical stuff). This procedure basically strips the cuff so you can't get cuffitis but I guess there is a chance of nerve damage. They say with a skilled surgeon the chances of nerve issues are very low but it's a serious risk that I wouldn't want to deal with.

I do think you have to give yourself time. They say it's really difficult right after takedown and things improve over time. I think you will be happy with your decision and if you're not, you can always go back to the ileo.