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Assuming you didn't need emergency surgery, did you just run out of medication options? I know many of you got surgery years ago when there were not as many options. Did steroids fail to work?

Steroids are still working for me, but they're starting to do a number on my bones (plus all the other fun stuff like weight gain, stretch marks, etc.). I think I have another stress fracture in my foot now, too, which has me really upset since I'm a hiker and (used to be) a big runner. While reading through all the stories on the internet forums, I feel like most people are sicker than me when they get to the point of surgery, so I just thought I would ask this question. Sorry if this has already been asked a lot. Thanks!

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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

@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

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.

Last edited by Sara14
@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...

@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.

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

Last edited by Lauren Of Emerald City

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.

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."

Last edited by CTBarrister

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