Surgery possibly imminent next week - looking for supoprt and advice... Mostly just ranting

So after roughly two years of faliling various medications (mesalamine, azathiprine, simponi, remicade, hydrocortisone enemas, budesinol) and essentially being on 20-80mg of prednisone since december 2014, it seems surgery might be my best option. Currently I am on 20 mg of pred and have had 3 infusions of entyvio. I still have around 20 bowel movements per day, with some light blood.

Although this is an improvement from before entyvio (before I had ~24 bowel movements per day. more blood and urgency - I have had almost no accidents after I started entyvio) various surgeons and doctors think I wont get better with entyvio and it would be better to do surgery now then wait any longer. So I scheduled surgery for next week (with a good experienced surgeon at one of the best hospitals in Colorado). However, my main GI thinks it would be better to give entyvio more time since there has been some improvement. That was his first opinion, though he also thinks I am a good candidate for surgery.

I dont get very good sleep, am pretty tired most of the time, and have some minor and constant abdominal discomfort, but other than that I feel healthy. This is what makes me feel so conflicted about surgery. Part of me just wants to do the surgery since I just want to have a normal life back (going 20 times per day has led to a hermit like existence) and it would be better to do it now since I am healthy thus reducing complications and recovery time. But the other half of me is hesitant - mostly because I do feel healthy and what if entyvio works or what if diet XYZ would work (so far I have done gluten free, AIP and FODMAP all with little to no effect) or what if its not getting better because of all the coffee i drink etc etc. And surgery is irreversible and I am not totally sure how it will effect my life like will I be able to do crossfit/ lifting with an ilesotomy? And i just cant believe not having a colon doesnt affect more things like your immune system and stuff -- that the biggest problem is really hernias and dehydration?

I guess basically what I am looking for is are there questions I should be asking or things I should consider that would help make my decisions easier? I am lucky to have either option going forward (either surgery with a great surgeon while healthy or the medicine works), super supportive family/firends and great insurance. And if I make my mind up to have surgery I will switch to only having positive thoughts about it, but I just wish there was a way to make this decision easier and clear cut. Thanks for any input or advice.

I recently completely 3 step j-pouch surgery and I couldn't be happier. I was always very concerned about flare ups and accidents. I couldn't get my mind off UC, not because I am crazy either, because my condition was so virulent, it was completely unpredictable. I couldn't make plans, I couldn't plan for the future at all, I couldn't work to my full potential, I could barely eat... Many people do not understand going to the extreme of having surgery, and you will hear a lot of push-back so far as, "try this" or "try that", but it sounds to me like you've tried a lot and you're tired of all of this. If not, go on and keep fighting.

I personally had enough. I am in my 30s, and I felt young and capable enough to get through these procedures. Boy was I right. I got through with flying colors... I was in the hospital for short periods with each one, I had zero complications, and I was off pain meds by the time I got home from the hospital. I have to say, each person is individual and there is no way to know how you will do, but for me, I would do it again in a heartbeat. I am planning my first trip in about 5 years. I got my confidence back. I haven't taken any medications in nearly 6 months. I lost all the weird, awkward fat I was carrying from prednisone. I swear, I have my 20s body back. What a dream!!! It was truly the icing on the cake.

So far as working out, I can do whatever I want with my j-pouch and I never let the ileostomy stop me either. The ileo is very easy to manage once you get used to it. The permanent is WAY easier than the temporary one, so if you're going with a permanent, you can definitely do cross fit. When I had a temp, I was always dehydrated and had low BP so I couldn't do anything physical but it was only 8 weeks. I don't want to paint pictures of rainbows and butterflies, there are down sides to surgery. I go to the bathroom more often than a person with a healthy colon - but healthy colon wasn't my situation. Going 20x a day is no way to live. I probably go 6x, at my leisure, no pain, no blood, no waiting around. Surgery is a huge change and it's time consuming and scary, but it was my biggest fear and I faced it. With an ileo, it's a bigger transformation because you have to buy supplies... It requires some learning but once you've got it down, you will live so much more freely than you did chained to a toilet bowl.

Byebye was one my my biggest inspirations. Knowing there are people out there who have been through this is amazingly therapeutic. Medication doesn't work for everyone. Don't give your future up to the toile

Anyway, I hope you get better and don't have to consider surgery but if not, I am here.

Ask me anything :)

You know what the clincher was for me? Worrying about being older and retired and still dealing with this condition - or worse, facing surgery at that time, when I am older and heal more slowly, maybe not a candidate for a jpouch, give up all those years to flare ups to still face the worst... The idea of that really made me feel like this was a better option.

you should not have surgery next week, you don't sound ready and your main gi did not see the urgency.

sounds like you may need it, but do you need it today vs in 4 months? you are not in the hospital failing iv steroids, and you have questions.

if there are complications, will you have doubts? if you want to know any limitations for crossfit, go find out. have a theory about coffee, then stop.

it does sound like no meds are going to help you, but it also sounds like you have option to get more ready/certian

just an opinion

Listen to DB and Notso...and listen to your GI DOCTOR!! A few years ago, I begged my g.i. doctor to take out whatever he needed to remove to give me back some quality of life. He told me..not yet my friend. I am now, SO glad. LOL I'm not the brightest bulb in the hallway, but...I would try Kefir and less coffee for a week. Lots of Kefir or almost ANYTHING. Just as DB and Notsosickly wrote...give yourself and the drugs time. You need to be certain that the surgery is something you will be comfortable living with. In my case, it only took upping my Remicade dosage. As for your...'ranting'...LOL This dang illness will make anybody rant!!! LOL Don't give up and I hope ya feel better soon! Good luck.

That's a difficult decision. Entvyio takes 12 -14 weeks to kick in for some, if you can hold out that long. I'm also concerned about your 2 continuous years of prednisone, as that has risk of giving you type ii diabetes, glaucoma, osteoporosis, etc (not a long-term use medication).

I'd do lots of research to see what surgery entails, possible complications, etc, just so you know what you're getting into. There's a number of blogs out there with great information from current and former healing well members who've been through the process:
ronnielee-fightingforit.blogspot.com/p/blog-page.html
fyouuc.blogspot.com/
itslikethisuc.blogspot.com/

Generally the results are good for most, a big improvement in quality of life. We've had a few members with abscesses as complications, delaying surgeries 2 and 3. Others that are unhappy with their surgery results here as well, and those aren't as easy to correct. Just something to note and weigh in the risks category, small but present.

It's your decision in the end regardless of what us or your doctors say. Good luck!

There is good advice above/before mine. When my daughter failed Entyvio, the doc said that if there wasn't even some improvement at wk 10, there probably wasn't going to be. I understand some are now doing dose adjustments and frequency adjustments, so that is still an option for you. You will know when you are ready- sounds a bit early for you to wrap your head around it.
I agree to get off of the pred asap, but don't go into surgery too sick, or recovery will be harder. My girl did a 3 step j pouch and is doing fine. Just hit the one year mark-and is living a normal life. Feels like a new person. It was hard on us both and we felt we failed in not figuring this out or finding some info that would change its course. Once accepted though, she could move on...and that she did. A whole new life of possibilities.
My wish is for an excellent surgeon, time for healing and the inner knowledge that the time is right to move on for you. Keep asking questions and reading. There is a good Facebook group too for J pouchers(if you are going that route). Best.

J-pouchers don't get enough time to properly judge what having an ileostomy is like, in my opinion. A few weeks with an end ileo, then a further few weeks with a crappy loop ileo really isn't sufficient, particularly when many people are hanging on for the day they can get it reversed. It took me about 18 months to really get used to having a stoma. Obviously I had the basics of looking after it down much, much sooner than that; I'm more talking about living with a stoma like you've always had one, I suppose.

I understand why nobody wants to wait 1-2 years for step 2, so I'm not recommending that. But I suspect if all j-pouchers had to do that, many more of them would choose to stay with the ileostomy. I didn't, but... long story.

Good luck anyway. Hope it all goes well.

Wishing you a speedy recovery!! :)

Sorry. Meant to update you guys sooner.

Surgery was AWESOME. No issues during it. Started walking two hours after it (still incredibly high on painkillers but still) and this week I am finally walking at a normal pace. Still some pain, but thats to be expected when they rip you open and take a chainsaw to your insides.

But best part about it is that even with all the pain and such, I feel a million times better than before surgery. I can sleep for longer than an hour or two! I have zero anxiety or worries going out! I have a ton more energy! Etc etc. And I should be off prednisone in two weeks (month long taper) so I bet ill feel even better after that.

The bag is not as bad as I thought it would be. Still a little awkward with some things (like where do I put when I go out, feels weird stuffing it down my pants; I still havent gotten the bag change down to a perfect science; not sure how to start doing crossfit again etc etc), but these are all things Ill figure out with time and by asking around on support groups or other boards (like ostomates). Life will also be a lot easier once I get my stitches out this week

I still have to decide whether I am keeping the bag or doing the j pouch surgery, but I still have like 4-6 months to decide that. Im sure Ill be posting more questions soon but right now IM JUST ENJOYING LIFE. Man it feels great. Thanks for all your support

That's great.....keep up the good work! :)