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Elective Colectomy/Ileostomy?

Posted by TadKapa, on Thu Jun 27, 2019 3:30 pm

I have a colostomy which probably doesn't relate to you. And I am one who was rushed into having the surgery.  Having to wear a pouch 24-7 comes with a whole set of problems and changes in life style.  Having said that, the adjustment period went well for me and I live pretty normally.

Reply by Johnsonk2, on Thu Jun 27, 2019 4:41 pm

I had a total coletomy done with a Jpouch in 2016 because the years of UC had destroyed by whole large intestine.  The 9 months with an ostomy were the best ever. I had my reversal and for the next 9 months I HATED life. Having no real info on jpouch I assumed the 20+ trips to the restroom and the raw bottom were a normal thing for a new patient. After a round of GI and Surgeon visits they found I had Crohn's in my Jpouch and perianal in the 1 inch that was left of my rectum, so I went back to the loop ielostomy. For me there was no choice in the beginning but this time I was 100% on board with the ostomy. Mine is a loop so I still have my jpouch which I take Entyvio (6 weeks) and it is now in remission. I will keep the loop forever unless something happens to the jouch.

Is a jpouch something they have suggested?

I will say for me I am almost back to where I was before my UC, and life does have it's issues but it's like a whole new world that I can go out in again without worrying about pain, food or the restroom.

Reply by pete b, on Thu Jun 27, 2019 4:48 pm

Hi Nicole ... I suffered the same as you. I now have an illeostomy, it does make life easier than having UC. I was given two days to live or take my colon .... not as good choice to make.  I live in the UK and there is a drug called infliximab, which I knew nothing about at the time and my surgeon much later after I asked him why I was not offered Infliximab .. His answer was that my operation was cheaper than this drug!.. great!!

Not sure if you can try it over there in USA???    

I have learnt quite a lot about THC cannabis oil ... I would definately try this!  I'm not sure if its legal where you are...it is a powerful natural medication that has so many benifits...Pleae read up on a RICK SIMPSON... RSO oil..... He doen't sell it  but shows you how to make it...... I cured my 88year old mums skin cancer using it in a few days.... YES a few days!.... Good luck!

Reply by HeyHey, on Thu Jun 27, 2019 5:17 pm

I could have had the surgery 13 years earlier than I did, but I just could not wrap my head around it. If you are suffering, be brave, and do it. Life is so much easier. If  you don't, evaluate each year, how much you have been suffering. I see most people are posting how much better it is to have an ostomy.  Blessings to you. Feel free to reach out.

Reply by pietrzak, on Thu Jun 27, 2019 7:01 pm

If I was you I would ck into BCIR procedure, it is done only in California and ST. Pete Florida, that would be my first choice you can research on line. Ileostomy is no picnic, that would be my last choice unless only option, I had ileaostomy last July and life has been not what I was use to, I also had UC.

Reply by HeyHey, on Thu Jun 27, 2019 7:25 pm

I asked about getting this about two years after having the ileostomy. Some people have inflammation from this as in colitis. With an internal body-cavity pouch it is harder to control the output than the simplicity of a bag. Using a catheter to remove stool sounds complicated and messy compared to emptiying an external pouch. What if it is too thick and hard to come out or too loose and comes out too fast? Talk to people who have it and ask about the drawbacks. the potential for leaking, ect. All these systems have their benefits and drawbacks. I'm sure it works for some people. You have to determine if you would be a good candidate. For me, I decided I just did not want another surgery and recovery time. The ostomy was working fine, for the most part, after learning and experimenting.

Reply by Ancient1, on Thu Jun 27, 2019 10:01 pm

Hello Ruppy08,

I too had UC and I put up with it for 28 years before electing to have a total colectomy eleven years ago. My colon was trashed by UC and each subsequent flare-up was worse than the last.  Getting my Ileostomy was a big change and had/has several challenges, it took a while before the post op inflamation calmed down to make getting the flange to seal consistantly. All in all I'm glad I made the decision to get it done. The others are right read evrything about your condition and discuss it with all of your doctors, in tnis case there are no dumb questions.

Reply by sunasea, on Thu Jun 27, 2019 11:29 pm
You are adorable and I'm 🙏'ing for you, if that's ok.

Sincerely,

Tom
Reply by bonny, on Fri Jun 28, 2019 12:49 am

Hi Nicole, I had chronic u c for 17 years then a bad flare up I didn’t respond to any drugs, so emergency total colectomy in 2010, I only heard about F M T fecal microbiota transplant,  in the last few years, watched a program on tv a lady in Sydney had it , like me she lived in the toilet, she went from around 50 toilet trips a day down to only one, just something for you to find out about and maybe give it a go, all the best little matey. 

Reply by zanzi1, on Fri Jun 28, 2019 12:54 am

I agree that FMT is an option I definitely would have tried if it had been available to me. I suggested this to my nephew who also has UC but he hasn't pursued it. Of course, I hope this works for anyone who wants to try it. It's good to know that there are choices.

 

 

Reply by Ruppy08, on Fri Jun 28, 2019 9:49 pm

Thank you Bain for your reply! I'm so glad your work was understanding and flexible. That does make things a bit easier. It definitely gives me hope to hear that you're better than your old self. I can only hope that will be me soon! Thank you for the information about the surgery- I figured I would probably wind up with an ileostomy. I appreciate your wisdom on the topic. Thankfully my husband is very supportive. When I first brought it up to him, he was pretty upset. But more so I think out of fear that something bad would happen. Now that he's had some time to sit on it, he is definitely the most supportive. After all, he's the one who is here when I'm in and out of the bathroom, unable to sleep at night, calling out sick, having to track down wipies and paper towels while we're in public. He truly is a Godsend.

Reply by Ruppy08, on Fri Jun 28, 2019 9:58 pm

Thank you VeritasSeeker!! I am so glad to hear that the FAA reinstated your medical certificate! I can't imagine being unable to do what you're passionate about. It's so nice to hear that you're able to enjoy the outdoors again too! It's so important for us as people, especially with a chronic illness, to be able to do what we love.

That's where I'm at too- about a year into seriously considering it. Initially I think it was my emotional response to hitting rock bottom. But now, after thoroughly researching, having a consult scheduled, and getting to hear from people who have been through it, I feel much more sound in my decision. I, too, am failing all of the major drugs and have been on and off Prednisone for over a year now- I just can't get on top of it. I'm so sorry to hear that you've been through so much, but in a selfish way, it's nice to hear a similar story.

Thanks for the tip on finding a good surgeon! I'm definitely going to do some research. I'm so glad to hear that your wife was able to help you through everything. I think the emotional impact is one of the main things my husband is concerned about. But since he's so supportive, I think I'll be okay.

Reply by Ruppy08, on Fri Jun 28, 2019 10:01 pm

RissyLauren,

I have two lanes of thought with this. One is to just go for the ostomy because i've seen that 50% of people with the J-pouch wind up with pouchitis. And I'd hate to go through all of that, just to wind up with the same disease all over again. However, my 2nd thought is to maybe try the J-pouch, because if it works then I won't have to worry about the bag. And if it doesn't work, then I'll have had some exprience with a bag while my insides heal.

What do you have? If it's okay for me to ask.

Reply by Ruppy08, on Fri Jun 28, 2019 10:05 pm

Thanks HeyHey for your reply! I'm so sorry you had to suffer from UC for so long! I've heard about the J-pouch and honestly that scares me a bit more than the bag. The idea that I could go through surgery, get used to the bag, then have that removed when the pouch is healed, then wind up with pouchities-- that sounds terrible! I'm glad to hear you've done your research- I'll take your word at it!

Can I ask-- with your night time high output bag, do you have to take the whole system off every night? Or is it something you can leave the seal on and just attach a larger bag to? Sorry if I sound naive, I haven't actually seen one in person.

Reply by Ruppy08, on Fri Jun 28, 2019 10:09 pm

Thank you Ancient1! I really appreciate your response. I'm so sorry to hear that you've been through so much. I too feel like I just keep getting worse. 10 years ago I could eat fairly well and go places. Now I feel like anything I put in my mouth comes out angry! I'll definitely ask a bunch of questions- my husband and I have quite the list going so far.

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