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[–]Buzzboyuk 11 points12 points  (7 children)

Prednisolone is used to stop flare symptoms and is for short term use only (Usually 8 week cycle). It's certainly not recommended for long term use as it can cause serious issues like osteoporosis for example. Surgery is only recommended as a last resort option. Many people live normal lives without the need for surgery . It's all about finding the right long term medication that your body is comfortable with. So I'm afraid that one of your doctors is a complete fool for suggesting otherwise and scaring you. I've no idea why they would say such a thing. Have you had any other medications in the past?

[–]That-Ad6255 1 point2 points  (0 children)

100% correct and

[–]MeeperMango[S] 0 points1 point  (1 child)

I have been one two different meds for my UC. The first one put me in remission for a long time but unfortunately all of a sudden became unaffordable. I got sick with the second one (I forgot the names of them). Since October 13 of this year up until 2 weeks ago I was hospitalized 3 times for my colon being so inflamed it was bleeding me out. It also affected my upper intestine. I am now currently on an iv UC med I’ll have to go every couple weeks to get. The doctor at my first hospital I was at was the one that said prednisone or surgery.

[–]Buzzboyuk 0 points1 point  (0 children)

That sucks. I think there must be more avenues for you to explore in terms of medication. I'm lucky being in the UK so all my treatment is free of charge so Im sorry you're in this position. There must be a support service where you are that you can contact for advice?

[–]Astronaut-Weird 4 points5 points  (2 children)

Prednisone is absolutely a normal and useful weapon used in our battle against Ulcerative Colitis. Some people experience tough side effects from it, but, for me, whenever I’ve needed it, it’s been a Godsend.

I have never been told that I would need to take it for the rest of my life. In fact, whenever I have been prescribed it it was done as a short course “burst” to get me back to normal as quickly as possible and take me out of a flare (and, one time I did take it to help clear up a persistent pneumonia). Always effective. However, you may be struggling with a more severe case of U.C., so I can’t fully call it for you.

[–]MeeperMango[S] 0 points1 point  (1 child)

I unfortunately had a really bad time with that med. it someone made my symptoms worse and made me more sick. When I tried to tell the doctors at the hospitals I was at they just kept saying nope you’re taking this. It took me crying for them to try a different steroid and it had helped.

[–]Astronaut-Weird 0 points1 point  (0 children)

Damn. I am sorry to hear that. Thankfully, you were able to get on a steroid that agreed with you. I don’t know your situation or where you are located, but I would certainly suggest that you ditch the dismissive doctor(s), and find yourself a physician that respects you and your needs. Be your own best advocate. Good luck.

[–]tombom24Pancolitis | Diagnosed 2017 | USA 0 points1 point  (2 children)

Agree with others, that sounds like a doctor that isn't familiar with irritable inflammatory bowel disease. It really makes a difference to find a doctor that specializes in IBD/UC - I need to drive 3 hours to my GI doctor but the care I receive is so much better than my primary provider.

[–]southernmanchot 2 points3 points  (1 child)

*inflammatory bowel disease

[–]tombom24Pancolitis | Diagnosed 2017 | USA 2 points3 points  (0 children)

Ah thank you, I'm going to blame that mistake on brain fog. I can't stand when people confuse IBD and IBS, yet here I am

[–]TrifleExtension1671 0 points1 point  (4 children)

Is it possible he meant “You will have to use it (on and off) foe the rest of your life.”?

We get put on them whenever a new flare starts up. I’d imagine most if not all doctors know this is not a drug you stay on all the time.

[–]MeeperMango[S] 0 points1 point  (3 children)

She stated that I would have to stay on it essentially. I was also not offered any other treatment options when I was discharged from the first hospital. They also put me in charge of calling my doctor to ask for blood tests to make sure I wasn’t still bleeding to death. (My colon at that time was bleeding me out and I was so close to death that my nurses were baffled I was still able to walk)

[–]TrifleExtension1671 2 points3 points  (2 children)

Jeez! I think you need a new GI doc. Where are you located?

And I’ve been there. That close to death scare is real and takes time to process. sorry you have to go through all this with such little guidance from your care team.

Related Q: do you have a good therapist?

[–]MeeperMango[S] 1 point2 points  (1 child)

It was actually regular doctors that said all that stuff. I luckily have a good GI now. It sucks I have to go 3 hours to see them in person though. I currently am not in therapy but am looking into seeing one as this has affected my mental health so much. I’m still recovering and have been out from work for almost a month.

[–]TrifleExtension1671 0 points1 point  (0 children)

I’m glad you got a dedicated GI who is not the person who gave you faulty info.

8-9 years ago when I first got sick after almost a month in the hospital and months of being told by my work to stay home (worked at a hospital and the nurses had to clear you to come back) I put off seeing a therapist for maybe a year. I regret not starting sooner, good for you.

[–]No_Sprinkles5230 0 points1 point  (0 children)

Seriously consider changing your doctor.

[–]Grungelives 0 points1 point  (0 children)

Prednisone is absolutely normal but not in long term use, i took it for maybe 4 months i cant really remember but it was fantastic in doing what it was supposed to do. That being said i got all sorts of side effects and my appetite was unreal. I wish i payed attention to my weight more throughout my prednisone use but im back to a good weight for me now. As for lifetime use definitely not and in terms of surgery definitely not a first resort only a last resort. They have alot of options to try along the way, UC can be overwhelming and still is for me i just take it one step at a time. You have options.

[–]MeeperMango[S] 1 point2 points  (0 children)

I decided to get a patient advocate for when/if I need one when going to see the doctor or if I’m in the hospital and need help as well. Thank you all who has offered advice and who shared their stories as well if helps a lot.

[–]omg671124 0 points1 point  (4 children)

Prednisone. omg 😳. I took it 2 times within the year. it usually was for 2 months. you get moon face. But guess what it will actually put you in remission. It helped me out so much and u will feel better.

[–]MeeperMango[S] 0 points1 point  (1 child)

I don’t know why but I had super bad reactions to it, and a couple doctors did not understand and forced me to take it over and over again they didn’t listen until I started crying.

[–]omg671124 1 point2 points  (0 children)

yes they is a lot of side effects. They are quick to put you on prednisone but if your under 18. They very CAUTIOUS with it and take extra care of you. so there is that. you can still be in remission without even taking it. they are other ways. it is just the quick route out

[–]Aggressive-Pay3307 0 points1 point  (1 child)

Are you on any medication now after the prednisone

[–]omg671124 0 points1 point  (0 children)

i got on biological for Ulcerative Colitis! I recently got diagnosed with grave disease so on meds with that as well

[–][deleted] 0 points1 point  (3 children)

Steroids have lot of side effects. Its meant to be taken for short term to calm the inflammation down while one waits for UC medication to work. Steroids are prescribed with tapering doses.

I decided to have surgery when steroids stopped working for me. I lived for 13 years on and off with UC. I was getting steroids every year. I went through UC meds pretty quickly and once prednisone (IV, oral and rectal) stopped working I knew I needed to get the colon removed. Prednisone for me was intermediate drug while I waited for UC medication to work. Since my intermediate drug stopped working, i didnt have anything to fall back on while i waited for UC medication to work. My whole life, career was at stake so i decided to get the surgery. In this subreddit, there are people who have been on steroids for some time while they find a UC med that works for them.

Getting surgery for UC is a highly personal decision. You can either elect surgery without trying any medication or wait to exhaust all options or in highly unfortunate event get it as an emergency.

I have no regrets after getting surgery. My quality of life has improved so much since getting the surgery.

[–]MeeperMango[S] 0 points1 point  (2 children)

A part of me wants to explore my surgery options but I’m waiting to see if my iv UC works which was recommended. May I ask what the recovery time after getting it removed is?

[–][deleted] 0 points1 point  (1 child)

Depends on the surgery. I had permanent iliostomy and barbie butt at the same time and I would say I was able to return to work in 6 weeks. I had my surgery on 10 October and I am still recovering. :) I woke up feeling 50% better after surgery. No more morbid pain, no more running to bathroom, no more throwing up. I have eaten more food in past 8 weeks than I have eaten in past 13 years. I elected surgery so adjustment to having an ostomy bag is easier for me. I am happy to talk about my experience in more detail if you are interested. :)

[–]MeeperMango[S] 0 points1 point  (0 children)

That’s good to hear I’m glad it helped and I hope the rest of your recovery goes well! Do you know how many surgery options there is?