Doctors advising surgery

I had J pouch surgery (6 years ago today actually!) and it was the best decision I could have made at the time. I had a two step laparoscopic procedure. It was tough for sure but I would do it again in a second. No regrets. I go to the bathroom an average of 4x a day, no urgency, no pain, no more meds, and I can eat what I like.

My recovery from step one was very hard. Recovery from step 2 (the takedown surgery) was much easier for me. Please let me know if you have any specific questions...I'll try to answer the best I can.

How bad is your disease? Has it reached a point where most of the potential complications wouldn't be any worse than what you have right now, or are the symptoms liveable with? Is there any dsyplasia involved?

I wouldn't rush to have surgery if you are functional, but if you are not, then I don't see there is much choice really. The chances of ending up with a permanent stoma are very small if you have UC and not Crohn's, but even if you do, it probably wouldn't be the disaster you imagine. Before surgery, people say stuff like 'I'd rather die than live with a bag', but I have never heard anyone who actually has a bag say that. I had one for over two years and would be okay with having one again. In fact I have been considering returning to a permanent ileostomy, but I still have 40-50 years of my life left to live (assuming something doesn't get me in the meantime) and no guarantees that the NHS will last that long. My fellow countrymen yesterday made it considerably less likely that it will, but I'm not bitter.....

Really ¬_¬

If I had the benefit of doing it all over again I'd fight tooth and nail to get onto the stronger meds as early as possible. I'd have binned off mesalazine after the first try (can't even tolerate the stuff anyway), got onto 6MP/azathioprine and done longer, slower tapers off pred.

Might not have worked, but if it had done, I'd almost certainly be in a better place today.

I'd quite like to give IVIG a try, but can't see my GI going for it - and he's one of the more open-minded ones.

But if Enytvio fails, who knows. I'm a long way from that point though. Gotta fail 6MP first and then piss about for a few months whilst funding for Entyvio is secured.

If you dont want to have surgery, don't have it. It's your choice. I post here because I am a moderator. I can tell you without a shadow of a doubt, if i weren't, I wouldn't post anymore. UC is nearly the last thing on my mind these days. I do not take any drugs anymore. I do not know what the future holds and I am thankful for the people here because they have helped me through some very difficult times, but I hope that it's over for me, I am happy to provide any and all ideas I can to help another person who is suffering with this awful illness. I am very appreciative for the ability to live normally now. I realize that not everyone has a great result, and if you have an inkling that you're not going to, don't consider it. I have the worst possible luck, so I am extremely surprised I did well, I actually sort of assumed everything would go wrong.

You say your symptoms aren't bad; but then you say you are on prednisone? If you are prednsione dependent, meaning if you cannot successfully wean off that drug, then surgery should be considered. I had jpouch surgery 15 years ago due to refractive disease. Back then the last drug of choice for treatment was 6mp. The only drug that gave me a small quality of life was prednisone. However, that drug should not be used as a maintenance drug as it has some fairly scary long term permanent side effects; some of which aren't realized until one is completely tapered off the drug.

I have never regretted my decision. I'm one of the ones that takes no drugs; eats what I want, and travels the world. My life and health post surgery has been excellent.


Sue

MarsRover said...
As I mentioned earlier, my disease isn't as detremenal for me as it is for others, but I do have a lot of problems still. I still go more than I feel I should, I am always fatigued and have a screwed up sleep cycle (a lot of this has to do with the drugs I am on-Prednisone being the primary offender). Where I am on the cusp the most is that I am 22 years old. I graduated college a month ago and am trying to start my professional career. I am even in the hiring process for a position right now that If I got it, it would be a year of solid training before graduating the academy. A flare up would be devastating and would ultimately result in me either resigning or being laid off (ADA wouldn't protect me given that its a sworn position apparently). My doctors and parents both feel its best I just have this surgery and be done with it if it truly means that UC, the drugs, flare ups, etc. are all behind me for good. I just really do not want to do this surgery and see my quality of life go backwards.

Are you still on pred or not? I can't tell. Because steroid dependency does make a massive difference here - is it the Entyvio or the pred which is controlling your symptoms at this point?

Don't listen to your doctors' promises or other people's experiences on the internet (including mine). Doctors are like trained robots sometimes, I swear. As for other people's experiences, they are completely and utterly irrelevant to yours: 99.9% of people could have the best possible outcome in the world, but what does that matter to you if you have a bad outcome? The only outcome which ultimately matters is your one.

So forget about other people and concentrate on you. Are you steroid-dependent? If yes, that's a big indicator for surgery. If no, then you have to look at stuff like your quality of life. You mention fatigue and screwed-up sleep cycles, but loads of people have those problems without having UC. If you are still on pred and it is messing with your sleep, again you need to consider how much Entyvio is really doing for you if you can't get off pred.

You seem terrified of another flare-up. How would j-pouch surgery fit into your year of training? It's a minimum of two surgeries and even if everything goes perfectly, you are still looking at weeks of pain, adjustment and recovery.

I think overall surgery would probably benefit you. The chances are high that UC, and the horrible drugs we take for it, would be gone for good. But you need to be ready for it. It needs to be your decision, not your doctors (unless it's an emergency surgery) or your parents. There are new meds in the pipeline, but do you want to hang around until they are available? Can you hang on until they are available? Personally I feel for you. The decisions we have to make with this disease are unbearable sometimes.

I'm still in the recovery stretch after my takedown in Feb of this year. If you'd like to read about my journey on here, this is the thread, there's 16 pages worth...

https://www.healingwell.com/community/default.aspx?f=38&m=3489398

My sister has had her J Pouch for 23 years with no issues. I'm no longer on any UC drugs. I am dealing with a bout of pouchitis which I'm on a couple antibiotics for about two weeks. It's completely under control and will proceed after the antibiotics are done to see if it comes back or not.

NiceCupOfTea said...

MarsRover said...
As I mentioned earlier, my disease isn't as detremenal for me as it is for others, but I do have a lot of problems still. I still go more than I feel I should, I am always fatigued and have a screwed up sleep cycle (a lot of this has to do with the drugs I am on-Prednisone being the primary offender). Where I am on the cusp the most is that I am 22 years old. I graduated college a month ago and am trying to start my professional career. I am even in the hiring process for a position right now that If I got it, it would be a year of solid training before graduating the academy. A flare up would be devastating and would ultimately result in me either resigning or being laid off (ADA wouldn't protect me given that its a sworn position apparently). My doctors and parents both feel its best I just have this surgery and be done with it if it truly means that UC, the drugs, flare ups, etc. are all behind me for good. I just really do not want to do this surgery and see my quality of life go backwards.

Are you still on pred or not? I can't tell. Because steroid dependency does make a massive difference here - is it the Entyvio or the pred which is controlling your symptoms at this point?

Don't listen to your doctors' promises or other people's experiences on the internet (including mine). Doctors are like trained robots sometimes, I swear. As for other people's experiences, they are completely and utterly irrelevant to yours: 99.9% of people could have the best possible outcome in the world, but what does that matter to you if you have a bad outcome? The only outcome which ultimately matters is your one.

So forget about other people and concentrate on you. Are you steroid-dependent? If yes, that's a big indicator for surgery. If no, then you have to look at stuff like your quality of life. You mention fatigue and screwed-up sleep cycles, but loads of people have those problems without having UC. If you are still on pred and it is messing with your sleep, again you need to consider how much Entyvio is really doing for you if you can't get off pred.

You seem terrified of another flare-up. How would j-pouch surgery fit into your year of training? It's a minimum of two surgeries and even if everything goes perfectly, you are still looking at weeks of pain, adjustment and recovery.

I think overall surgery would probably benefit you. The chances are high that UC, and the horrible drugs we take for it, would be gone for good. But you need to be ready for it. It needs to be your decision, not your doctors (unless it's an emergency surgery) or your parents. There are new meds in the pipeline, but do you want to hang around until they are available? Can you hang on until they are available? Personally I feel for you. The decisions we have to make with this disease are unbearable sometimes.

I am still on prednisone yes but on a much lower dosage than I was months ago (since January I have tapered from 60 to 10 mg). Last year I started on Humira and we thought that was working. Then when I got down to 10 mg (which is where I am at now) I basically went right into a massive flare up and had other issues that sent me to the hospital. Doctors in essence said that humira did literally nothing for me. Because I am on 10 mg with some side effects (though not nearly as bad as last time), I believe the entyvio is at least helping. That being said, I cannot tell if it is truly the prednisone or the entyvio, or maybe a combination of both that is actually helping me. My GI told me there is no way to tell unless I just cut out prednisone fully and see how I react (which he has advised against for obvious reasons). According to whatever he saw during my last scope, he feels that while entyvio may have helped, I probably won't see more improvement from where I am now without surgery.

In re the second portion, that is really truly where I am at crossroads wise. My family and my doctors all want me to get the surgery, and surgery probably is the best bet overall. Especially if I can get it out of the way and then by like, October or I am patched up and ready to move on with the rest of my life. The thing that truly sucks is if I move forward with surgery, I will more than likely have to withdraw my application and start over later. I couldn't start the job then take time out for the second surgery+recovery time. But honestly at this point, there are other places to work too if it really doesn't go over well. Thankfully the hiring manager for the city was my fellow classmate in my cohort, so that should help me out at least a little bit.

blksteeda thank you for sharing your thread/blog. I hope you bounce back fully from your pouchitis


I've never had an upper endoscopy, at least I do not think I have.

If you're gonna have the surgery then there's not much in trying to get off the pred now (even if you managed it, your surgeon will only have to put you on a stress-dose of steroids during the operation anyway). But if you're not gonna have it, then my advice would be to begin a very, very slow taper off pred. You can get 1mg pills and cut those in half or even quarter them. 10mg of pred is still high enough to wreak havoc on your bones, etc. in the long-term. Not advisable to stay on it.

ks1905 said...

blksteeda said...
I am dealing with a bout of pouchitis which I'm on a couple antibiotics for about two weeks. It's completely under control and will proceed after the antibiotics are done to see if it comes back or not.

I'm sorry to hear that, I hope that you get the pouchitis under control. I've been dealing with it for about 2 years now and I agree that it is completely under control when I am on the antibiotics but as soon as I go off them it becomes pretty difficult in about a 7 days.

within one day of flagyl and cipro, symptoms improved greatly. I'm completely under control at the moment. He'll scope my pouch if it becomes an issue but otherwise he'll scope me at the beginning of next year

Where is it you live? One thing to consider, you'll have numerous follow up appointments with your surgeon. I'll be under my surgeon's care for one year, I had my takedown in Feb of this year. I've already seen him numerous times and also due to complications after my initial surgery, hospitalized 3 more times. If you're incredibly far from those locations you'll have to consider follow up appts and if any issues arise. I had a bowel resection in 2013 at Cleveland Clinic in Florida and had a pinhole in the surgical join that made me horribly sick and rushed me into emergency surgery. It was a great hospital and I had a highly experienced surgeon but things can happen.