How did you decide it was time for surgery?

I was just sick and tired of being sick and tired. Remicade had become available but it didn’t seem to do anything for me (I may not have given it enough of a chance). The steroids were having their way with me, and I didn’t want to wait until I lost a hip or developed cancer (cancer rates become astonishingly high after an extended period with UC). I had to contact several surgeons before I found one willing to take a chance on me.

I wasn't taking any medication for UC and was getting along well. Was in great shape working full time and doing whatever. Was getting yearly colonoscopies and low-grade dysplasia was starting to turn up. When high-grade dysplasia started to appear, the gig was up. After 20 years of UC, it was time for a J-pouch. No matter what path you take, make certain to be diligent with surveillance. One of my doctors said the appearance of cancer doesn't always follow the low-grade to high-grade to cancer sequence. Sometimes it can quickly appear after low-grade dysplasia.--Rose

I was diagnosed with pancolitis when I was 16 in 1972. Nearly a month in the hospital and IV steroids plus hydrocortisone enemas finally turned things around. I stayed in remission for about 23 years and was hit with another severe bout of pancolitis. I tried prednisone for six months to no avail. Remicade was experimental at that time. It was colectomy or eventually waste away or bleed to death. I had a family to raise and did not have the time to screw around being sick all the time.

Prednisone should never be considered a long term solution, since it damages nearly every system in your body. In the long run you do yourself no favors by delaying things by thinking that you are doing well on prednisone. The reason that biologics have made such a big splash is that they can get you off steroids and possibly avoid colectomy. But if they do not work, colectomy can save your life, your bone health, your eyes, your heart, your adrenals, your stomach, etc. from the ravages of prednisone.

Jan

Thanks all for the perspectives! I'm sitting here in pain on the toilet at 5 am while still on 20 mg pred, so it doesn't even seem to be working as well this time.

@Sara14 posted:

Thanks all for the perspectives! I'm sitting here in pain on the toilet at 5 am while still on 20 mg pred, so it doesn't even seem to be working as well this time.

I was taking a bunch of medicines at once, even prednisone and nothing was working. The doctors said I could try Biologics but I was done at that point, I was not going to try biologics only to have it fail down the road possibly. I told the doctors I was not going to take anything else, I wanted the surgery!!!! Almost 7 years with my pouch and I am very happy

@Former Member posted:

I was taking a bunch of medicines at once, even prednisone and nothing was working. The doctors said I could try Biologics but I was done at that point, I was not going to try biologics only to have it fail down the road possibly. I told the doctors I was not going to take anything else, I wanted the surgery!!!! Almost 7 years with my pouch and I am very happy

Thanks, Lauren. I'm starting to feel that same way! I have Xeljanz yet to try, but I've been reading all about it online, and it honestly really scares me. Also, the efficacy rates aren't even very good.

@Sara14 posted:

Thanks, Lauren. I'm starting to feel that same way! I have Xeljanz yet to try, but I've been reading all about it online, and it honestly really scares me. Also, the efficacy rates aren't even very good.

Your welcome! I was 22 at the time so I was drained from suffering for so long. Before you throw in the towel, can you live without regrets from not trying biologics first??? I could, that is why I did it.

I've tried Remicade, Humira, Entyvio and Stelara. None have worked other than Remicade for only 2 months. So all I have left is the Xeljanz. I guess there are also clinical trials but I don't think I want to waste my time on those and taking meds that haven't even been proven safe yet. I'm just getting really sick of all the waiting and I'm getting really worried about steroids and my bone density. I got a stress fracture in my foot from just walking 1 mile a year and a half ago while on prednisone, and now I'm scared I have another one in the same spot. And again, all I've been doing is walking, nothing strenuous.

It is a long process trying all the biologics because they can take months to work. I've been going through and trying them all for almost 2 years now. It is kind of exhausting trying meds over and over for 2 years, tapering off steroids, symptoms coming back, trying to get the flare back under control, over and over. And worrying about the meds giving you bad side effects at the same time.

@Sara14 posted:

I've tried Remicade, Humira, Entyvio and Stelara. None have worked other than Remicade for only 2 months. So all I have left is the Xeljanz. I guess there are also clinical trials but I don't think I want to waste my time on those and taking meds that haven't even been proven safe yet. I'm just getting really sick of all the waiting and I'm getting really worried about steroids and my bone density.

HA! There is no way I would have gone through all of that and I did not lol. You have way more tolerance/patience than I do haha

Have you tried Mesalamine enemas???

Lol! I edited my last post to add a little more info. But yes, I've been using the enemas for 14 years now. They have helped me a lot but unfortunately they dont help enough anymore. My first 6ish years, all I was on was mesalamine and I was pretty well under control after the initial horrible flare. I guess my disease just got worse over the years or the mesalamine stopped working as much for me. I tried imuran in 2019 too but could not tolerate the side effects.

@Sara14 posted:

Lol! I edited my last post to add a little more info. But yes, I've been using the enemas for 14 years now. They have helped me a lot but unfortunately they dont help enough anymore. My first 6ish years, all I was on was mesalamine and I was pretty well under control after the initial horrible flare. I guess my disease just got worse over the years or the mesalamine stopped working as much for me. I tried imuran in 2019 too but could not tolerate the side effects.

Did you do the Mesalamine enemes twice a day???

What side effects did you have Imuran??? Mine were anemia and fatigue.

I've tried the enemas twice a day a few times over the years. I guess I could try that once more, idk. I don't think it covers all the affected area though. My scope in November has inflammation in the rectum, then a skipped patch and then more in the sigmoid... That made me think Crohn's but my GI said it was probably the enema hitting that part because of the natural folds of my colon or something. I used to be able to taper them down for maintenance and up them to nightly for flares, but I've been on them nightly for many years now, with symptoms returning if I missed more than a night or 2 here or there.

I've not been able to get off either pred or Uceris for over 2 years now. I felt more comfortable being on Uceris longer term since most of it is absorbed in the colon, but it is still a steroid and it was giving me some steroid side effects. And if I tried to taper off the Uceris, I would get pretty bad again within a week or 2 and then need a course of pred to get it back under control. Then when done with the pred, I had to go back on Uceris for maintenance...not really a good long-term pattern, lots of steroids...

Oh I forgot--imuran gave me terrible nausea and overall made me feel terrible. I felt like I was poisoning myself. I had zero quality of life.

@Sara14 posted:

I've tried the enemas twice a day a few times over the years. I guess I could try that once more, idk. I don't think it covers all the affected area though. My scope in November has inflammation in the rectum, then a skipped patch and then more in the sigmoid... That made me think Crohn's but my GI said it was probably the enema hitting that part because of the natural folds of my colon or something. I used to be able to taper them down for maintenance and up them to nightly for flares, but I've been on them nightly for many years now, with symptoms returning if I missed more than a night or 2 here or there.

I've not been able to get off either pred or Uceris for over 2 years now. I felt more comfortable being on Uceris longer term since most of it is absorbed in the colon, but it is still a steroid and it was giving me some steroid side effects. And if I tried to taper off the Uceris, I would get pretty bad again within a week or 2 and then need a course of pred to get it back under control. Then when done with the pred, I had to go back on Uceris for maintenance...not really a good long-term pattern, lots of steroids...

Yeah, you definitely need the surgery for sure! I would recommend twice a day with Mesalamine enemas until you can get surgery. Please try to get the surgery this year if you can, I would hate for you to get worse. IBD is not good being untreated and left like that, it can eventually lead to colon perforation.

@Former Member posted:

Yeah, you definitely need the surgery for sure! I would recommend twice a day with Mesalamine enemas until you can get surgery. Please try to get the surgery this year if you can, I would hate for you to get worse. IBD is not good being untreated and left like that, it can eventually lead to colon perforation.

I don't know if I can even do one enema right now. I feel really inflamed down there and am in pain. My GI keeps telling me to just keep tapering the pred though so he can scope me next week... So I guess this upcoming week should be fun. Lol. Thanks for your responses though!

@Sara14 posted:

I don't know if I can even do one enema right now. I feel really inflamed down there and am in pain. My GI keeps telling me to just keep tapering the pred though so he can scope me next week... So I guess this upcoming week should be fun. Lol. Thanks for your responses though!

Your welcome! And Yeah, I remember when I was inflamming, I could not do any either! It was terrible back then. I hope your scope goes well, please keep me updated hon

I was sick. I knew why. And I wasn't getting better

And the odds of cancer increases the longer I wait.

As Scott said.

I was sick and tired and being tired of being sick and tired.

A mind (just as the body) can only take so much.

I had as much as I could take. So. I did it. It was elective.

I won't go into my history. It's here on the forum.

Both colon and pouch removal. 

I'm good now and that is what counts in my world.

No more suffering from "it".

Richard.

I was on 80mg of prednisone by the time I had surgery. Not a great thing. I kind of wish my doc pushed surgery more, but I guess I needed to come to my own conclusions.

Jan

None of the biological drugs was around when I had to have surgery, but the main reason for my decision to have surgery was dysplasia and my then conservative long time GI doctor recommending it and a surgeon in New York City he said was the best in the USA. And from the time that diagnosis was made until surgery happened was around 9 months due to a variety of factors, and in that time I deteriorated BIG TIME. When my colon was finally removed my surgeon told me it dissolved in his hands from all the inflammation as he took it out. That colon could not be preserved for all of the post surgical stuff they usually do with it. They just threw it away. He told me I was very close to the dreaded toxic megacolon, and my surgery, while elective, couldn't have really waited any longer. At the time I was taking 60 mg of prednisone daily which obviously was not working. Other meds that had been attempted and failed at that time were cortisone enemas, azulifidine and Imuran. Remicade, Entyvio, Stelara didn't exist at that time. Because I have had good success with Remicade now and it's also being used to treat UC, I suspect if it had been around in the late 1980s and early 1990s, it might have saved me from surgery. But it wasn't and it didn't.

I think in retrospect I probably should have made the decision to have surgery earlier than I did. Then once I made the decision, which I dragged my feet on, logistical issues happened: having to finish law school and take and pass 2 bar exams; getting recommended to the best J pouch surgeon in the USA at that time and then waiting for months to get an appointment with him; and then waiting more months to first lose the weight he had mandated I lose, and then get surgery scheduled. A lot of people here do not understand how rapid deterioration can happen when meds are not working. You don't have to feel like you are going to die to be on the verge of toxic megacolon. I didn't - and I was. So my concern is always there when I read posts by someone who says no meds are working. Once you reach the end of the line with meds things can get dicy quickly, and I found this out when I had surgery "just in the nick of time."

Thanks so much, all. It's extremely helpful getting all this feedback.

This was pre-biologics. I knew I was going to keep randomly ending up hospitalized for flares. That was unacceptable.

Thank you. I guess I'm lucky I've never been hospitalized for a flare. I was hospitalized for c diff. and another time for really severe reoccuring campylobacter infection that we initially thought was my UC. I should have gone to the hospital for my very first flare but I was told I was no longer covered on my dad's insurance at the time and I had just started my first job out of college. My own insurance hadn't yet kicked in.

S -

You mention that steroids are doing a number on your bones ... back in the mid 80s, after a couple of years of relatively high dose prednisone, I was dx'd with avascular necrosis in my knees.  Only a matter of time until I needed them scoped to clean them out.

Fast forward to 2009 and I had bilateral replacement at 46 yrs old.  And that was after back surgery (because I walked like John Wayne for years).  And elbow surgery.

Now hindsight is unfair, and there is no definitive proof that it was the prednisone, but I would have pulled the trigger earlier than I did and not subjected my body to the cocktail of medications that I did.

My 32 year ride has not been perfect but the years I lived with active UC were far, far more challenging -- emotionally & physically -- than the last 3 decades.

Last point and certainly an oversimplification, but after being on this site for years and talking to many UC/pouch folks ... my totally unscientific belief is that either you'll respond fairly early to meds or you won't.  Folks will disagree but that search for the panacea begins to preclude 'rational' decision-making imo ... how many enemas?  How many different meds?  How many diets? 

Today my joints are good ... I can climb and bike again ... keep the big picture in mind ... it's your life.

- M

Hi Sara,

I was diagnosed with moderate to severe pancolitis in April 2015 and after hospitalizations, C-Diff, blood transfusions, TPN for several weeks, shingles while in a nursing facility for rehab and attempting Remicade with limited results, I decided to have surgery, three steps.  It just seemed like one long flare, feeling only slightly better at times.  I was 60 years old for my first surgery, so age was a factor.  I was reasonably healthy, at least healthier than when I had lost 35 lbs.  I had gained back 25 prior to surgery.  I had my first surgery in November 2015 and my last was August 2016.  It will be 5 years since takedown this August.  I am doing pretty well, active, hiking and biking during the warmer months.  During the pandemic, we got a lot of outdoor exercise, winter hikes/walks and snowshoeing.  I have been more active since my j-pouch, also since retirement.  The first 6 months to a year are an adjustment period.  Also, I take Lomotil every evening so I don't have to get up during the night and during the day, usually once if I will be out for a while.  For me it was a no brainer as to getting surgery.  Good luck with your decision.

Michael,

I was on prednisone chronically from 1972-1992 in varying dosages. I had a bone density scan done in 2010 or so which determined I had osteopenia in my hip which my doctors attributed to prednisone use. It does affect the bones over time and can cause osteoporosis as well as AN and is something for anyone to be concerned about if they are taking it for years.

I was diagnosed with UC in 1999 at 42. My mom had been diagnosed in 1982 with UC. At that time she was on azulfidine and prednisone. She made it to 1986 and then had a traditional ileostomy. I only made it 2 yrs before S - pouch surgery in Omaha. They had me on mesalamine, both oral and suppositories, and was up to prednisone 60 mg a day. Surgery was recommended , no biological available for UC at that time. Remicade had just been approved for Crohn’s. In a way I am glad there wasn’t one available for me, as in 2013 I was diagnosed with Stage 1c ovarian cancer. I had surgery, 4 rounds of chemo, and so far so good. I wonder if the newer stuff would have made my cancer more aggressive?. I do pretty well with my pouch. I have to watch what I eat, drink a lot of fluids, had I hospitalization almost 2 yrs ago with a partial bowel obstruction, that scared me, thank goodness for the gastrograffin that pushed everything thru, so no surgery. I have been a hospital pharmacist for 25 of my 40 yrs. I see very few patients treating UC or Crohn’s anymore with oral meds. Our hospital is 190 beds, but we probably have 8 to 10 patients a week coming in for Remicade, Entyvio, Stelaro. Is it just me or these diseases becoming more common.
Vickie - UC diagnosed 2/1999: S-Pouch surgery with temporary ileostomy 4/2/2001, reconnection to internal S pouch 9/11/01.

@Michael posted:

S -

You mention that steroids are doing a number on your bones ... back in the mid 80s, after a couple of years of relatively high dose prednisone, I was dx'd with avascular necrosis in my knees.  Only a matter of time until I needed them scoped to clean them out.

Fast forward to 2009 and I had bilateral replacement at 46 yrs old.  And that was after back surgery (because I walked like John Wayne for years).  And elbow surgery.

Now hindsight is unfair, and there is no definitive proof that it was the prednisone, but I would have pulled the trigger earlier than I did and not subjected my body to the cocktail of medications that I did.

My 32 year ride has not been perfect but the years I lived with active UC were far, far more challenging -- emotionally & physically -- than the last 3 decades.

Last point and certainly an oversimplification, but after being on this site for years and talking to many UC/pouch folks ... my totally unscientific belief is that either you'll respond fairly early to meds or you won't.  Folks will disagree but that search for the panacea begins to preclude 'rational' decision-making imo ... how many enemas?  How many different meds?  How many diets?

Today my joints are good ... I can climb and bike again ... keep the big picture in mind ... it's your life.

- M

Thanks for the response. I think I understand your last point about meds. I was mostly fine on only mesalamine my first 6ish years with UC, although never totally in remission during those years. Then I was fine on only mesalamine with pred once or twice a year for another 5 years. But then in 2018, I got into the never-ending flare. The biologics never worked though. Yeah, I don't feel like trying diets or anymore supplements, and one enema a night is more than enough and not doing the trick anymore. I guess you're right that it becomes kind of insane trying all these medication cocktails for years on end. It certainly is stressing me out to say the least.

Sorry about your knees. That's scary. I got osteoporosis at age 35. I reversed it to osteopenia at 36 last year but it is still borderline and I think I have another stress fracture in my foot now just from walking. I'm depressed about it because I was finally getting back into shape. I just really worry if I can't even safely walk, let alone run. Those are my passions in life.

Thanks again for sharing your experience. Your perspective helps.

@Vickie posted:

I was diagnosed with UC in 1999 at 42. My mom had been diagnosed in 1982 with UC. At that time she was on azulfidine and prednisone. She made it to 1986 and then had a traditional ileostomy. I only made it 2 yrs before S - pouch surgery in Omaha. They had me on mesalamine, both oral and suppositories, and was up to prednisone 60 mg a day. Surgery was recommended , no biological available for UC at that time. Remicade had just been approved for Crohn’s. In a way I am glad there wasn’t one available for me, as in 2013 I was diagnosed with Stage 1c ovarian cancer. I had surgery, 4 rounds of chemo, and so far so good. I wonder if the newer stuff would have made my cancer more aggressive?. I do pretty well with my pouch. I have to watch what I eat, drink a lot of fluids, had I hospitalization almost 2 yrs ago with a partial bowel obstruction, that scared me, thank goodness for the gastrograffin that pushed everything thru, so no surgery. I have been a hospital pharmacist for 25 of my 40 yrs. I see very few patients treating UC or Crohn’s anymore with oral meds. Our hospital is 190 beds, but we probably have 8 to 10 patients a week coming in for Remicade, Entyvio, Stelaro. Is it just me or these diseases becoming more common.
Vickie - UC diagnosed 2/1999: S-Pouch surgery with temporary ileostomy 4/2/2001, reconnection to internal S pouch 9/11/01.

Thanks, Vickie. Sorry to hear about the cancer. The biologics are crap in my opinion. The efficacy rates are so low, and even when they do work, it seems like for most people, they don't work very long. And of course, they all terrify me. I waited as long as I could before trying biologics and even Imuran. I'm glad they work for some people, but for me, they have been nothing but 2 years of wasted time, money, energy, and stress!

If you see this, do you mind sharing if obstructions are common with the pouch and how do you get one? Eating certain things? I've read a lot about obstructions or blockages with the ileostomy but not as much with the pouch so I'm less familiar with that. I am worried about diet because with UC, I eat whatever I want and I'm vegan but maybe it would be ok. Thanks. By the way, my mom lives in Fremont. I have been to Omaha many times.

@CTB23 posted:

Hi Sara,

I was diagnosed with moderate to severe pancolitis in April 2015 and after hospitalizations, C-Diff, blood transfusions, TPN for several weeks, shingles while in a nursing facility for rehab and attempting Remicade with limited results, I decided to have surgery, three steps.  It just seemed like one long flare, feeling only slightly better at times.  I was 60 years old for my first surgery, so age was a factor.  I was reasonably healthy, at least healthier than when I had lost 35 lbs.  I had gained back 25 prior to surgery.  I had my first surgery in November 2015 and my last was August 2016.  It will be 5 years since takedown this August.  I am doing pretty well, active, hiking and biking during the warmer months.  During the pandemic, we got a lot of outdoor exercise, winter hikes/walks and snowshoeing.  I have been more active since my j-pouch, also since retirement.  The first 6 months to a year are an adjustment period.  Also, I take Lomotil every evening so I don't have to get up during the night and during the day, usually once if I will be out for a while.  For me it was a no brainer as to getting surgery.  Good luck with your decision.

Thank you! That's great you are able to be so active now. That's reassuring to hear. That's what I want to get back to!

I don’t know if obstructions are common, I’ve only had the one hospitalization and that was a perfect storm of traveling, being kind of dehydrated, and some really fiberous romaine lettuce in a side salad, that I only ate part of at lunch time, by bedtime I could tell nothing was moving along like it should have, and then I had pain, cramping, and nausea. We were in Denver on vacation, so went in to the hospital. They did a CT, saw the blockage, put in a NG to help drain, and gave me gastrograffin thru the NG, this is a dye for X-rays, but also an oily type laxative, within an hour, things were moving. No more lettuce for me. I have had a few near misses with bowel obstructions over the years, and usually, lots of fluid, especially warm fluids, walking, simethicone, and a heating pad have made things better. I suppose as me and my pouch get older, there is more scar tissue, etc. I am pretty careful about what I eat, I eat meat, but it has to be tender and small pieces, try to drink a lot of fluids all day, and have to stay away from anything fiberous or tough.

I have never had an obstruction.  It's weird, because I tend to eat whatever I want.  I do make sure I drink enough fluids during the day. 

Thank you both!

@Vickie posted:

I don’t know if obstructions are common, I’ve only had the one hospitalization and that was a perfect storm of traveling, being kind of dehydrated, and some really fiberous romaine lettuce in a side salad, that I only ate part of at lunch time, by bedtime I could tell nothing was moving along like it should have, and then I had pain, cramping, and nausea. We were in Denver on vacation, so went in to the hospital. They did a CT, saw the blockage, put in a NG to help drain, and gave me gastrograffin thru the NG, this is a dye for X-rays, but also an oily type laxative, within an hour, things were moving. No more lettuce for me. I have had a few near misses with bowel obstructions over the years, and usually, lots of fluid, especially warm fluids, walking, simethicone, and a heating pad have made things better. I suppose as me and my pouch get older, there is more scar tissue, etc. I am pretty careful about what I eat, I eat meat, but it has to be tender and small pieces, try to drink a lot of fluids all day, and have to stay away from anything fiberous or tough.

Was the lettuce blockage during your J-pouch or ostomy???

Xeljanz put me into remission, so no surgery for now (knock on wood)! Thanks to everyone who gave me input here earlier this summer. It will be invaluable if the time for surgery ever comes.

Prednisone was still working but my bone density was dropping after years of using it since I didn't respond to any other drug and would flare up immediately if I stopped taking steroids. I was also put in the hospital two years in a row with C-Diff. The complications of prednisone combined with the bouts of C-Diff and enormous risk of colon cancer prompted me to finally act.