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Total Colectomy & Ileostomy / Ulcerative Colitis

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Posted 6/26/2018 3:36 PM (GMT 0)
Hi Everyone -

This is my first post, though I've been reading these threads for ages throughout my battle with Ulcerative Colitis.

I am scheduled for a total colectomy and ileostomy on Wednesday as the first of 3 surgeries in the coming months as my disease is unresponsive to medications.

I wanted to introduce myself and simply ask for any advice from people who have been down this road.

Thanks in advance.
Posted 6/26/2018 3:55 PM (GMT 0)
Coming here to promote your blog is against the terms of service. Please post your link in your profile or signature and participate. That is the appropriate way to get your link seen.
Posted 6/26/2018 5:35 PM (GMT 0)
I saw the timeline on your blog, and it looks like we've been following a pretty similar course smile I started getting very sick in 2016 and diagnosed early 2017. I've been on Remicade for about 14 months - in fact, I'm getting an infusion as we speak! - but I've flared on it and my calprotectin is still very high, despite feeling much better.

We're giving it a few weeks, rechecking calprotectin and if it's still high, we're going to scope and consider another treatment.

I've also considered surgery in the past few months, but will likely try Entyvio and/or Xeljanz first. I'm curious - did you consider other treatments, or decide that surgery was the best course? There's absolutely zero judgment; I'm literally just curious. I'm thinking a lot about surgery even though I've only failed mesalamines and maybe Remicade. I keep being told it's premature to think about surgery, so it's good to hear from someone else with a similar experience.

Thanks! Best of luck.
Posted 6/26/2018 5:54 PM (GMT 0)
@notsosicklygirl (moderator) I apologize, I didn't know. I've edited my post.

@Fletch10 Thanks for the response! My doctor and I discussed Entyvio and Xeljanz and I wish my disease had given me more time to try these options. The problem is that Entyvio can take up to 12 weeks to work, and Xeljanz can take up to 8 (I think), but you have to get the Remicade out of your system first (which is also about 8 weeks from last infusion).

I started flaring in May, and things progressed so quickly for me! I've been to the hospital 3 times to deal with the symptoms. They affect my ability to live my life normally - they make me unable to go to work and school (I'm getting my Masters). After a Sigmoidoscopy on June 8 that showed my inflammation as severe, my doctor and I determined that I did not have the time to try either of the other drugs, and that surgery was my best bet. Most people have more time because they can use Prednisone or another drug to get them through, but I am on Prednisone (for my third time) and it does very little for me. Uceris, increasing my Remicade dose to 10mg/kg, and Mesalamine enemas also did nothing for me.

I am okay with this option (surgery) because I believe it will completely rid myself of the disease and allow me to start fresh. I have/had a fear that if I did Entyvio or Xeljanz that they would work for a period of time like the Remicade did, then quit and I'd be looking at surgery again in the near future.

I'd love to keep hearing updates on your journey, and if you end up trying Entyvio or Xeljanz and how they work.

Thanks!

Post Edited (Now UC It, Now You Don't) : 6/26/2018 6:11:18 PM (GMT-6)

Posted 6/26/2018 6:06 PM (GMT 0)
Thanks for sharing this, Angela! I understand everything you've said - my disease should have responded to steroids but didn't, should have responded to mesalamines (but I was intolerant), should have responded to Remicade but I only got a few months' remission out of it, and "should have" done a lot of things ;)

Hopeful that I am headed back to remission now, but if not, we will consider Entyvio or Xeljanz using tacrolimus suppositories as a bridge, which have been thankfully effective for me as a prednisone substitute. However, as I've told my family and friends, I have little patience for hospitalizations, misery, the cost of these treatments, etc. I'm 41 years old and want to LIVE my life. I'm tired of cancelling trips, plans, being nervous about bathroom access, missing meals because I don't want to have to need a bathroom, etc.

So surgery keeps looking better and better, but I also keep hearing that it's "too soon" to talk about that. SMH :/ I wish you the VERY best with your surgery, and would love to keep hearing updates from you as well!

Thanks!
Teresa
Posted 6/26/2018 6:12 PM (GMT 0)
Exactly! I totally understand. I also, want to live my life - I want to travel more, I want to finish my school, and I want children. I'm happy to do this now, get it out of the way, recover, and hopefully be able to live life fully afterward. I plan to keep my blog updated with the results of the surgery and the recovery process, ad I'll try and post more on here too. It's great to be able to talk to people who understand.
Posted 6/26/2018 8:06 PM (GMT 0)

Now UC It, Now You Don't said...
@notsosicklygirl (moderator) I apologize, I didn't know. I've edited my post.


No worries. I didn't remove your link because it is a good resource and I think a lot of us appreciate you sharing. I do appreciate you moving it to your signature where people can see it when you post. This way we know who you are and we can read your story.

I went through surgery a few years back and it has worked out well for me. My story is in my signature, but it's just a post here, no blog smile

Please feel free to reach out if you have any questions throughout the process.


OH WOW, tomorrow?!?! Did your surgeon say anything about fertility after? Mine said it can be impacted but that there's no reason to assume it will be a problem. I didn't want children so I didn't worry abotu that aspect. Are you have 2 or 3 steps?
Posted 6/26/2018 8:25 PM (GMT 0)
Surgery #3 in July.After 32 yrs i got the dreaded monster out of me.Best decision i ever made.Good luck
Posted 6/26/2018 10:03 PM (GMT 0)
@notsosicklygirl I appreciate that a lot. I'm glad the surgery worked out for you - it is nice to hear positive stories.

I did discuss fertility with my surgeon. He said something very similar to what yours did - that my fertility can be impacted by the surgery due to scar tissue, but hopefully it won't be a problem and that if the scar tissue is an issue, there can be other options such as IVF. My thoughts on this is that pregnancy and a normal life are not an options for me at all with active UC, so my chances of a healthy pregnancy and life are probably better with the surgery, even with the potential chance of fertility being impacted.

My surgery is 3 step because I am currently on Prednisone and was so recently on Remicade.

With your surgeries, it looks like you did them all pretty close together which is what I am hoping to do. Was there a reason you waited 12 weeks between the first 2 as opposed to 8 weeks? Would you mind sharing your recovery time after each surgery?

@3timechamp Thanks for the positive words! It's nice to hear you are so positive about it while still in the midst of the surgeries.
Posted 6/26/2018 10:59 PM (GMT 0)
Great blog, it touches on many areas we all can relate to here. Best of luck to you, Godspeed on your recovery & new life!
Posted 6/27/2018 1:50 AM (GMT 0)

Now UC It, Now You Don't said...

My surgery is 3 step because I am currently on Prednisone and was so recently on Remicade.

With your surgeries, it looks like you did them all pretty close together which is what I am hoping to do. Was there a reason you waited 12 weeks between the first 2 as opposed to 8 weeks? Would you mind sharing your recovery time after each surgery?
.

My surgeon said I had to wait 12 weeks. I probably would have, and could have done it sooner otherwise. I healed quite quickly from each step. I am allergic to opiates. I have to take an antinausea and antiallergy med with them, so I wanted off the pain drugs quickly. I was taking almost exclusively tylenol from the moment i left the hospital. I was in the hospital for the longest with the first step - due to a drain tube i had in my butt. Not everyone has this, but my surgeon does it. I think i was there for about 6 days. The second step I was out in probably 4 days. Then the last step, it was just 2 I think. it's hard to remember. I wanted to get through the steps quickly for insurance reasons. I started in June, and I wanted to be done by end of year. I was a little stressed about complications and whether I would be able to get it done before the end of the year, but luckily I didn't have complications and everything went smoothly.

I have a long thread where I wrote about each step.
/www.healingwell.com/community/default.aspx?f=38&m=3569886

Good luck tomorrow. You will do great. it would be hard managing life with severe and unmanageable UC, especially with a family. You will live much better, and without the drugs and expenses after surgery.
Posted 6/27/2018 1:18 PM (GMT 0)
Good luck on today's surgery, I bet you'll love the new UC-free you and the new possibilities that opens up. When you feel well enough, please post an update on the forum here.

I'll keep an eye on your blog and add it to the other surgery blogs listed in our Resources section, provided it's filled in with enough good/helpful info in there smile
Posted 6/27/2018 4:34 PM (GMT 0)
Congrats!! Today you put UC behind you once an for all!

I had my first step done in February and started feeling better the moment I woke up from surgery. It wasnt pretty, I was super sore and had the lousy butt-tube. But, my demon colon was gone. The days of constant cramps, pain, blood loss, crapping my pants at any given moment, and the devil’s tic-tac’s (aka prednisone) were gone!

I was in the hospital for about a week after the first step (was sooooo sick before surgery). I can’t recommend walking enough! Walk as much as you can (without overdoing it). It helps wake everything up and get all the chemicals and gases moving out of you.

I’m scheduled for the step two July 17th. I have been enjoying life again so much and I wanted to wait longer but the lame proctitis in my rectal stump won’t leave me alone. So here we go! These surgeries are not easy, but for me, have given me my life back. Sure, I wish the meds & diet had worked and I could have had a successful remission, but that wasnt in the cards for me. I do not miss my UC colon. I have not grieved it one day.

Let us know how it went, when you feel up to it!
Posted 6/28/2018 3:11 PM (GMT 0)
Hi there!

Welcome! I'm sorry to hear your body hasn't been as responsive to medication as you'd probably like it to be; that can be pretty frustrating. sad I can empathize as my body followed a similar path. I was diagnosed with UC in 2014, but was lucky enough to have a couple years of remission; in 2016 my disease started flaring until I had surgery May 24 of this year! I tried basically every drug I could (including all the big guns: Remicade, Entyvio then Humira). Even with the highest possible doses of these drugs, they never fully controlled everything, and thus I decided to go through with surgery.

Thankfully, I was able to take my time with my decision in that I wasn't in an emergency. Thus I was able to talk to a variety of people with different circumstances and decided on persuing a permanent ileostomy, rather than a J-Pouch (but no pressure! That was my decision; I totally understand the decision to go either route). So far, barring some pain and complications, I have absolutely no regrets! For the first time in 4 years, I feel like I've actually been able to breathe. Let me tell you, emptying my ileostomy bag 4-5 times a day compared to using the washroom 12-15 times a day sure makes a huge difference!!

If you have any questions about what to expect from surgery or how to prepare, let me know! I can try to pass on all that I've found out through my own research/experience. smile
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