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Posted 3/3/2018 8:35 PM (GMT 0)
So I am scheduled for surgery at the Mayo Clinic next week. I am struggling to make peace with it as there are so many factors and right now my symptoms are minimal. I'll provide a little back story which may help:

I am 27 and had UC for 5 years. The first 2 weren't terrible, probably moderate UC? These last 3 I see to cycle. Spring I heal, Summers are good, Fall-Winter I seem to get sick and flare.

The last 3 years I've been on prednisone constantly. Anywhere from 10-40mg. Probably 25-30 average if I had to guess. Always attempting to taper. I got down to 10 that first year flared and sat around 25-30. This last year I got down to 12.5 in November and flared that same week of thanksgiving really bad. Back up to 35 and now sitting at 17.5.

I have tried several diets, the longest was Paleo for about 1.5 years. didn't give me remission but maybe it helped? I quit because of its cost and didnt actually put me into remission.

Ive been through Humira, Remicade, and now on entyvio every 4 weeks-Imuran 250mg-Prednisone 17.5. over the last month ive had my first solid stools since diagnosis. however when I sent to may a few weeks ago they still showed moderate to severe left sided UC. They also found C Diff and I stated antibiotics for that.

Since coming home ive slow got a little better still. but its day to day. seems like every other day is good with the other just slightly shaky.

I dont know if I would be delaying the inevitable if I choose to delay surgery, or if I may find remission for the first time?

Mine and the doctors big concern is the steroid dependency, its long term effects along with the other meds pumping through my body. They also say there isn't currently anything in the drug pipeline that'd be much different than my failed therapies.

Do I wait and see if I flare? Do I risk waiting until emergency surgery? Do I wait and see if it does go into remission? Do I just do it and hope for a good outcome? If I hold out do we find a better solution?

I feel as my young age is double sided. Better recovery but at the same time, so young to have it done?

I guess in the end my biggest fear is ive managed to "get through" day to day this long, do I risk life being worse with no return? Its hard to want to walk into surgery when im actually doing well and not feeling awful. a few months ago this would have been a no contest decision. at the same time I typically do better during this time of year.

im having a hard time finding people who have done this in a more elective standpoint rather than a no other option decision.
Posted 3/3/2018 9:35 PM (GMT 0)
if it is inevitable, doing it while stronger is good. if it is not inevitable, why do it. New drugs all the time.
Posted 3/3/2018 10:07 PM (GMT 0)
I has surgery Jan 9th and it was my choice.Could of went on Humira or Remi but choose not to bc of fact that it lowers your immunity.My colon was not responding to Pred which it had always done.Both my surgeon and my Gastro[for 33 years ] agreed with me.Surgeon said it was a badly inflamed colon.I'M 59yo and wanted my life to be normal after putting up with the UC monster for 33 years.Extremely happy i got surgery.No more anxiety,no more meds.Life is good.So happy that i made choice and i wasn't an emergency patient.Recovery was ok,took life slow and let my body heal.Hope the best for u
Posted 3/3/2018 10:10 PM (GMT 0)
I'm kinda in the same situation as you are. My UC is being quite the pain in the ass and my doctors say Remicade isn't working for me in the long term, that as soon as I drop down to 20/30 mg of prednisone, the symptoms come back, so I feel like I'm running out of options.

I'm now to begin a new treatment, most likely Tofacitinib/Xeljanz (still on trial phase, I think). It was either this or Entyvio. Haven't you tried these yet?

The surgery option also scares me a bit, but hey, look at the good things: you are UC-free, you (most likely) don't have to worry about diets (so you can eat whatever you want!) and you stop being imunodepressed because of the meds. Maybe you can ask to talk to people that have undergone surgery?

(At least this is how I look at the situation. I hope I'm not giving any wrong infos. Someone please correct me if I'm wrong)
Posted 3/3/2018 10:18 PM (GMT 0)
I find surgery quite a drastic thing to do, particularly if you know how to get it better. Have you looked at options to relocate into a (constantly) warmer climate?
For me it’s the opposite, it gets worse in warm climate, which sucks as I hate the cold.
However you decide, good luck!
Posted 3/3/2018 10:28 PM (GMT 0)
I am not going to preach about how great surgery is, or how much better I am since having surgery, but it can be a necessary evil. You're young, and you've run through all the medical options, you're harming yourself with long-term steroids. Even if you were to stay stable for a year or two, you will likely face another flare up within the somewhat near future, and the next time, what are the options? More pred? You're not even off pred, and while people think 17.5 is a low dose, it's still relatively high considering you're not too stable. You could always go on and try clinical trials, or wait and see... You don't have to have surgery while you're feeling well, but if you've been on prednisone for 3 years with varying levels of stability, that's not where you want to be - we've had members require hip surgery due to past pred use.

You could wait to have surgery. The worst possibility about waiting, is that you may be sicker going into surgery, and you may not be a candidate for two steps. Not really the end of the world. You also may wait and find something that works for you, so that could be very positive too, but even if something works, it doesn't seem like anything works forever in most cases. i wasn't on steroids, and I wasn't THAT sick, and I had three steps, I am fine. Getting through the days is great, but getting healthy is better. I do not know about doing worse after surgery. How can you be worse when your life no longer includes unpredictability, doctors, drugs, expenses, excuses & limitations? Just my opinion. Unless you had a really horrible result, which I suppose is possible. You need to do thorough research, look at the good, and the bad, and see whether it's a viable option for you. Consult a surgeon and get opinion. Exhaust any tests that differentiate Crohn's from UC.

I've lived in both hot and cold for long periods and my UC was not effected...
Posted 3/3/2018 10:45 PM (GMT 0)

TurnipFish said...
I'm kinda in the same situation as you are. My UC is being quite the pain in the ass and my doctors say Remicade isn't working for me in the long term, that as soon as I drop down to 20/30 mg of prednisone, the symptoms come back, so I feel like I'm running out of options.

I'm now to begin a new treatment, most likely Tofacitinib/Xeljanz (still on trial phase, I think). It was either this or Entyvio. Haven't you tried these yet?

The surgery option also scares me a bit, but hey, look at the good things: you are UC-free, you (most likely) don't have to worry about diets (so you can eat whatever you want!) and you stop being imunodepressed because of the meds. Maybe you can ask to talk to people that have undergone surgery?

(At least this is how I look at the situation. I hope I'm not giving any wrong infos. Someone please correct me if I'm wrong)

Oh yeah ive talked to people who've had it done as much as I can. Im on entyvio. thought about zeljanz, but my doctor read the studies and say it has a very low rate especially compared to placebo which is not good. and its not "as good" as remicade humira or entyvio I guess?
Posted 3/3/2018 10:47 PM (GMT 0)

notsosicklygirl said...
I am not going to preach about how great surgery is, or how much better I am since having surgery, but it can be a necessary evil. You're young, and you've run through all the medical options, you're harming yourself with long-term steroids. Even if you were to stay stable for a year or two, you will likely face another flare up within the somewhat near future, and the next time, what are the options? More pred? You're not even off pred, and while people think 17.5 is a low dose, it's still relatively high considering you're not too stable. You could always go on and try clinical trials, or wait and see... You don't have to have surgery while you're feeling well, but if you've been on prednisone for 3 years with varying levels of stability, that's not where you want to be - we've had members require hip surgery due to past pred use.

You could wait to have surgery. The worst possibility about waiting, is that you may be sicker going into surgery, and you may not be a candidate for two steps. Not really the end of the world. You also may wait and find something that works for you, so that could be very positive too, but even if something works, it doesn't seem like anything works forever in most cases. i wasn't on steroids, and I wasn't THAT sick, and I had three steps, I am fine. Getting through the days is great, but getting healthy is better. I do not know about doing worse after surgery. How can you be worse when your life no longer includes unpredictability, doctors, drugs, expenses, excuses & limitations? Just my opinion. Unless you had a really horrible result, which I suppose is possible. You need to do thorough research, look at the good, and the bad, and see whether it's a viable option for you. Consult a surgeon and get opinion. Exhaust any tests that differentiate Crohn's from UC.

I've lived in both hot and cold for long periods and my UC was not effected...

Sounds like mayo only really does 3 steps due to better success? and also my prednisone levels prevent from less steps as well
Posted 3/3/2018 11:20 PM (GMT 0)
I woke up from my colectomy (step-1 of 3) and just felt so much healthier, the monster was gone.

I waited too long, fought it, tried all the meds and then some but for me it was necessary. I was begging for it by the time I went into the hospital.

I fought it for 8 years, and because I waited and used steroids for too long then I required a 4th surgery which was to replace my hip. I am only in my 30’s so it’s very unusual at my age to need it. See the Thread in my signature about it.

So I have the dreaded chronic pouchitis, believe me, it’s it nearly as bad as living with UC. I just need to treat it with medications and it responds really well. I empty my pouch 2-5 times a day. I am very happy with my jpouch and only wish that I did it sooner.
Posted 3/3/2018 11:54 PM (GMT 0)

ks1905 said...
I woke up from my colectomy (step-1 of 3) and just felt so much healthier, the monster was gone.

I waited too long, fought it, tried all the meds and then some but for me it was necessary. I was begging for it by the time I went into the hospital.

I fought it for 8 years, and because I waited and used steroids for too long then I required a 4th surgery which was to replace my hip. I am only in my 30’s so it’s very unusual at my age to need it. See the Thread in my signature about it.

So I have the dreaded chronic pouchitis, believe me, it’s it nearly as bad as living with UC. I just need to treat it with medications and it responds really well. I empty my pouch 2-5 times a day. I am very happy with my jpouch and only wish that I did it sooner.

I think that’s my biggest fear, I wait to long and the medication effects are worse than the UC.
Posted 3/4/2018 2:55 AM (GMT 0)
I expected to be in a lot of pain but it wasn’t that bad. Not that I didn’t have pain after the surgery but I blew it out of proportion.

It was easier than I personally expected but by in no means was it a walk in the park. You can definitely manage this if you want surgery, looking back the toughest part was being ok with having surgery and I waited too long because of that and it ruined my hip.
Posted 3/4/2018 3:49 AM (GMT 0)

ks1905 said...
I expected to be in a lot of pain but it wasn’t that bad. Not that I didn’t have pain after the surgery but I blew it out of proportion.

It was easier than I personally expected but by in no means was it a walk in the park. You can definitely manage this if you want surgery, looking back the toughest part was being ok with having surgery and I waited too long because of that and it ruined my hip.

I’m assuming given your personal experience, you would 100% recommend doing surgery?
Posted 3/4/2018 6:12 AM (GMT 0)
I’m 20 and had mine 4 weeks ago so you’re definitely not too young. Surgery for me was amazing I have my life back finally and am able to do things I wasn’t able to do before while worrying when a flare will hit. It’s definitelt a large surgery that you have to think long and hard about, recovery is not easy but after the two-three week mark I felt better. I was on steroids for way too long though, mine wasn’t necessarily elective but I wish it was. I went into surgery fairly weak and at 88 pounds, I’m still trying to gain the weight back! I’m not bashing anyone who doesn’t agree with surgery but why keep something in your body that makes you miserable. Most people have there’s under control with medications and diets but that doesn’t work for all of us! I had it for 14 years and wish they would have done the surgery when I was 7. I didn’t even know surgery was an option until around 2 years ago! But I say if your quality of life is bad then I reccomend surgery. (I don’t want to seem like a pusher so sorry if that’s what it sounds like!)
*I was also in and out of the hospital for 3 months more in than out and got multiple pulmonary embolisms from all the inflammation, I would have rather had the surgery than having to spend this much time in the hospital trying to make it better!
Posted 3/4/2018 6:52 AM (GMT 0)

Mak37 said...
I’m 20 and had mine 4 weeks ago so you’re definitely not too young. Surgery for me was amazing I have my life back finally and am able to do things I wasn’t able to do before while worrying when a flare will hit. It’s definitelt a large surgery that you have to think long and hard about, recovery is not easy but after the two-three week mark I felt better. I was on steroids for way too long though, mine wasn’t necessarily elective but I wish it was. I went into surgery fairly weak and at 88 pounds, I’m still trying to gain the weight back! I’m not bashing anyone who doesn’t agree with surgery but why keep something in your body that makes you miserable. Most people have there’s under control with medications and diets but that doesn’t work for all of us! I had it for 14 years and wish they would have done the surgery when I was 7. I didn’t even know surgery was an option until around 2 years ago! But I say if your quality of life is bad then I reccomend surgery. (I don’t want to seem like a pusher so sorry if that’s what it sounds like!)
*I was also in and out of the hospital for 3 months more in than out and got multiple pulmonary embolisms from all the inflammation, I would have rather had the surgery than having to spend this much time in the hospital trying to make it better!

Oh jeez I’m sorry to hear that!!!!

Yeah I think ultimately surgery will be the answer. How ever after this weekend I think it needs to wait a few months. My family and I need to get some stuff taken care of and the 2.5 weeks we’ve had haven’t been long enough to really be comfortable either. I’m also trying to figure out if I’ll have a career still after all this, or run out of sick and vacation leave. My employer has a 9 month policy where I’d need to be back to 100% full duty regardless if I have sick time or not to take.

My wife is finishing her doctorate of pharmacy so I’m the single income and have been for quite sometime now. It would make more sense to try to give it a few months, she graduates in May, maybe have a job or residency soon after, and I have more time off saved up. Also gives us more time to be at peace with a decision.

Also I’d hope I can either taper down or off the prednisone. If I get off great, maybe surgery isn’t necessary YET. If I can’t and flare again, boom we know we have a for sure answer. But also, maybe I can keep it lower knowing it’s gonna get taken out.

I think scheduleing the surgery 2.5 eeeks Out from consultation was too fast given my health being fairly good. I’ve always been impatient and this shouldn’t be an impatient decision
Posted 3/4/2018 7:00 AM (GMT 0)
That sounds like a great plan! It would definitely help to get lower on the prednisone. I’m still tapering off mine and it’s been 4 weeks post op, definitely sucks to be on them during and after surgery, especially larger amounts! You have thought this through and seem very informed, hope all goes well!!
Posted 3/4/2018 7:21 AM (GMT 0)

Mak37 said...
That sounds like a great plan! It would definitely help to get lower on the prednisone. I’m still tapering off mine and it’s been 4 weeks post op, definitely sucks to be on them during and after surgery, especially larger amounts! You have thought this through and seem very informed, hope all goes well!!

I appreciate it and hope you the best as well!

I literally spend hours everyday trying to talk to people and do research. Last night I was up until about 5am just reading forums and looking into research articles.

Surgery in the end doesn’t seem all that bad as most people’s outcomes with modern techniques seem quite good. However for some reason I get the feeling this next week is not appropriate. I don’t think it’s worth going into rushed, especially when neither my wife nor I feel prepared or at peace with all of it yet. Her, even being a pharmacist, almost, knows drugs are definitely not the answer in this case, especially prednisone!
Posted 3/4/2018 11:46 AM (GMT 0)
Without a doubt, I would undergo surgery. 3-years on pred is waaay toooo long. Pred's quietly wasting away your bones, giving you things like type ii diabetes and/or glaucoma. Lots of irreversable things with long term pred!
Posted 3/4/2018 1:59 PM (GMT 0)
I've got to agree with iPoop. Long-term pred simply isn't a viable option. I didn't feel that bad before surgery either, but that was only because I was on 40mg pred. Which, while I felt quite good on it, wasn't actually doing a thing to heal my colon. The pathology report showed that I had severe chronic and acute inflammation throughout my colon.

As a test could you get off pred in summer and still be okay? I tended to always flare worse in winter too; most of my acute flare-ups over the years have happened in autumn or winter.
Posted 3/4/2018 2:36 PM (GMT 0)
I can understand your situation very well.

I have been diagnosed with severe Pancolitis or Universal Colitis and my entire colon is infected.

My primary Doctor with whom I am consulting does not favor going in for surgery until it is really required.
In-spite of that, I at one point of time got so fed up of the symptoms I went ahead and decided to just to get a second opinion on my condition, which turned out to be a sort of nightmare for me.
I consulted 2 specialists from 2 different hospitals-both very well reputed and which are big hospitals, where the doctors were only keen complete removal of the colon through surgery and were talking about the need to carry a pouch for sometime followed by another surgery to connect the small intestine to the rectum etc which literally made me run for my life as I am not yet ready to mentally to make the drastic changes required post surgery.
I have hence gone back to my regular doctor who is incidentally the Asst Chief of the Gastroenterology Board for the entire State and continuing his treatment (Of-Course-he doesn't know I consulted other docs for a second opinion)
He is still very confident that once he gets me into remission, its on me to prolong the period and doesn't favor surgery at all till absolutely necessary.
I am 49 and currently on Imuran, pred, asacol and pantodac and with great difficulty started some physical exercises-and just waiting just when the remission will happen. My doc also is not much in favor of using biologicals like Ramicade and Humira also .
My advice would be to try and get a second opinion and even a third if required as you are quite young still and can fight this easily-just stay positive. Good Luck...!!!!
Posted 3/4/2018 6:28 PM (GMT 0)
Quality of life and long term med risks are what you should consider. Sounds like yiu have a good plan at this point.

Please keep us updated,
q
Posted 3/4/2018 6:38 PM (GMT 0)

Fighting PanUC said...
I can understand your situation very well.

I have been diagnosed with severe Pancolitis or Universal Colitis and my entire colon is infected.

My primary Doctor with whom I am consulting does not favor going in for surgery until it is really required.
In-spite of that, I at one point of time got so fed up of the symptoms I went ahead and decided to just to get a second opinion on my condition, which turned out to be a sort of nightmare for me.
I consulted 2 specialists from 2 different hospitals-both very well reputed and which are big hospitals, where the doctors were only keen complete removal of the colon through surgery and were talking about the need to carry a pouch for sometime followed by another surgery to connect the small intestine to the rectum etc which literally made me run for my life as I am not yet ready to mentally to make the drastic changes required post surgery.
I have hence gone back to my regular doctor who is incidentally the Asst Chief of the Gastroenterology Board for the entire State and continuing his treatment (Of-Course-he doesn't know I consulted other docs for a second opinion)
He is still very confident that once he gets me into remission, its on me to prolong the period and doesn't favor surgery at all till absolutely necessary.
I am 49 and currently on Imuran, pred, asacol and pantodac and with great difficulty started some physical exercises-and just waiting just when the remission will happen. My doc also is not much in favor of using biologicals like Ramicade and Humira also .
My advice would be to try and get a second opinion and even a third if required as you are quite young still and can fight this easily-just stay positive. Good Luck...!!!!

Oh I’ve defin gotten other opinions. I’ve seen 3 local doctors and then 2 at Mayo. None of them have disagree with any of my treatment. I just fail to fully respond to anything. I’ve had mild responses to most, but they don’t always last. The entyvio was the best with imuran but it’s been extremely slow and have flared with it once still. Prednisone seems to be the only thing to keepmit at bay. I’ll give it one last go to get off then I’m kinda SOL. Haha
Posted 3/4/2018 7:25 PM (GMT 0)

Hunting For Remission said...

ks1905 said...
I expected to be in a lot of pain but it wasn’t that bad. Not that I didn’t have pain after the surgery but I blew it out of proportion.

It was easier than I personally expected but by in no means was it a walk in the park. You can definitely manage this if you want surgery, looking back the toughest part was being ok with having surgery and I waited too long because of that and it ruined my hip.

I’m assuming given your personal experience, you would 100% recommend doing surgery?

No, not 100% recommend. You may want to try Stelara first, it is pretty fast acting. It’s a personal decision, I think that you have to be ok and prepared for surgery, it will go better for you. Just remember that you need to make a decision for your QOL, not just this year but for decades to come.

I found and was happy with my surgeon. That was a big reason for me wanting surgery.
Posted 3/4/2018 8:45 PM (GMT 0)
I’m a little over one week from surgery (1st of 3 step) and am so glad I have had it done. While recovery is slow and hurts, I feel like I’m in Disneyland compared to dealing with the Pancolitis I was battling a couple weeks ago. I couldn’t catch a break. The meds, diet, nothing worked for me. My only option for biologics was Entyvio (because of past cancer history) and it didn’t give me blink of relief. The prednisone helped me get down to 10+ bloody BM’s a day and I could limp my way through the day at work. Beyond that, I was useless for anything.

Looking back a year ago, I was super fit (11 marathons under my belt and thought I was invincible). For the past 6 months, I’ve watched my body deteriorate from the UC and prednisone from 160 lbs to 130 lbs. I went from running 20 miles a week to shuffling around like a 90 year old grandpa. Now a week out of surgery, I’m still far from running any distance, but I feel sooooo much stronger. The chronic sick feeling, the cramps, anemia, food dread, toilet anxiety, all gone.

I can only speak for myself, but for me, living on prednisone was not an option. While I would have loved to have remission through other medication, it wasn’t in the cards I was dealt, so I moved on and went for surgery. Looking forward to running again soon!
Posted 3/4/2018 9:55 PM (GMT 0)
Do you have pan colitis effecting the entire colon? Steroid dependency is a huge deal and something you don’t want to deal with down the road. It’s hard for anyone to say what you should do based on your brief description but I think it’s better to take action now if you trust your doctors and what they’re telling you. I suffered way longer than I should have before having j pouch surgery and I regret wating so long. Life has been great ever since I ditched my crappy colon. Best of luck to you and l know the uncertainty you’re feeling. If you have any questions about surgery feel free to ask.
Posted 3/4/2018 10:26 PM (GMT 0)

ByeByeUC said...
Do you have pan colitis effecting the entire colon? Steroid dependency is a huge deal and something you don’t want to deal with down the road. It’s hard for anyone to say what you should do based on your brief description but I think it’s better to take action now if you trust your doctors and what they’re telling you. I suffered way longer than I should have before having j pouch surgery and I regret wating so long. Life has been great ever since I ditched my crappy colon. Best of luck to you and l know the uncertainty you’re feeling. If you have any questions about surgery feel free to ask.

Moderate to sever left sided UC

Going to push it a few months. See if I can get off prednisone or at least lower. Take care of some other family things as well. Shooting for June now.

I figured why go in options at a bad point on our overall life when I have the health to make it a few month further out when things are better in life. Less stress, more financially stable, and more time off from work.

I think I’ll be better emotionally and mentally prepared and hopefully this will give me a better outcome. Also if my prednisone isn’t so high.
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