Stuck on steroid enemas, what’s next?

Hey all,

I have some questions I’m hoping you can help with.

I’ve found that I can live a ‘normal’ life without worrying about my UC if I take steroid enemas every few days. This has been an amazing discovery as before that I was stuck on pred for over 18 months, but now instead of being stuck on pred, I’m stuck on the enemas. Obviously this is a much better situation, I don’t have the awful side effects and to be honest it’s the best I’ve felt in years. I’m leading a pretty awesome life at the moment so I’m reluctant to change anything, however I know the normal course of action would be to move from remicade (I’m on max dose/ frequency available to me), to another biologic in the hope to get me off steroids all together.

I’ve already failed two biologics and I’m not too confident that trying a third will work out for me (xeljanz isn’t available where I live yet), so im thinking I may be better staying as I am in the hope the steroid enemas eventually put me into remission. What would you guys do? What are the side effects for long term steroid enema use? It’s been a tough couple of years with multiple hospital stays, I really don’t have the strength to give up this new found lease on life to risk trying something new with the possibility of getting so sick again. I’m not sure what the best course of action is from here.

No unfortunately the 5ASAs don’t cut it. I’ve tried the foam, liquid and suppositorys but within about 10 days things start turning for the worse.

How did you get off the steroids? Did you taper the enemas?

It’s been about 10 weeks I’ve been on them now but I only need to take them every few days. I’ve been warned by my dr to mentally prepare myself to loose my colon if we can’t get things under control so do you know how long it would take for the enemas to thin your colon so much to cause problems? I wonder if we talking decades or just a few years?

Longterm usage of any steroid is a bad thing. Steroid enemas can thin the walls of your rectum.

Can you request uceris foam enemas and see if those do the trick? That or budesonide enemas. I would probably hang on for a while too, even though I am aware that it's not the greatest situation, and when it progresses, and it will, what then?

How about entyvio?

Surgery while having thinned skin from steroids certainly wouldn't be a great option. Having surgery electively yields a better result. You don't want to wait until there is a perforation or something. I am sure you're fine at the moment, but surgery is something to consider. My life is much better since. The problem is that the results are very varied, you never know how it will work out until you do it.

I hate to be negative but Simponi is very similar to remicade or humira. At least entyvio is different. I think xeljanz would be a good option but you said it's not available.

Surgery, for me, has been the best thing. Off all drugs, able to do whatever I want. It was hard to recover. I have a lot of responsibilities, mostly financial, andI can't be out of work and continue to support myself... it was hard, but now I can do anything and everything. I don't even care so much about being insured these days. I am so much healthier overall. My medical expenses and literally zero, in both time and money - but realistically, that is not the case for everyone post surgery.

Certainly, jumping the mental-hurdle of a surgery is the hardest part by far. In the end, you have to be pragmatic and separate the emotion from the decision. Layout the cards in front of you, as far as what options you have left to tryout. Determine the pros and cons of each choice, and it's time-cost. Then take a calendar and block out the amount of time you are willing to schedule for getting well. Yes, you can try 5 more treatment paths one-at-a-time, and wait one month for each to work, and you're quickly at almost 1/2 a year suffering and watching life pass you by. As devil's-advocate, what's the time allotment for a surgery and recovery. Which gives you the clearest odds of success and back to a good quality of life.

Often, I find that fear is what drives us away from certain treatments paths (whether that is a biologic or a surgery). The best way to overcome fear is to dispel it with knowledge and question your assumptions/fears. To use an analogy, it's 2:00am in the morning and a loud, repeating noise awakens you from your sleep. You can let you mind run wild about nightmarish creatures or home-intruders who might be causing said sound. Alternatively, you can turn on the outside and inside lights and find out what is actually causing it. That noise, might simply be an unlatched gate that the wind is banging and not the fantastic beast your runaway mind has conjured up.

The next treatment option is just like the unlatched gate. Yes there are risks to taking biologics or undergoing a surgery, everyone acknowledges that fact. What is important for you to do, is determine what are the actual odds of the most concerning to you things of happening? It's all about defining actual risks verses benefits. We all know that getting into an automobile could potentially kill us, however, it isn't something that stops us from using a car as the risk is pretty low. The reality is that with a biologic or surgery, it is really the same exact thing (rare adverse reactions with very low odds of occurrence). It's due diligence to know what's possible and how likely it is. However, you shouldn't avoid treatment and a likely better quality of life, due to a minuscule risk (as we tend to do when fear is running our decisions).

I don't know if you actually need a surgery or not, however, knowledge and dispelling fears is a good direction to go in regardless. I tend to be analytical and research all paths out ahead of time. It's like a game of chess, the best players know what to do 10 or more turns in advance, and have several strategies in-mind for various moves their opponent might make. UC and chronic illness is no different, and should be exactly the same.

Certainly a tougher decision if you're getting along well now.

Pred is pretty much the devil, you know there is going to be a long term, irreversible cost to their usage, whether that is a type ii diabetes, glaucoma, or osteoporosis.

Reviewed your signature details further. Some thoughts.

1.) When you got hepatotoxicity from the Imuran, was reducing the imuran dosage and trying adding Allopurinol discussed? That combination often enables use of that med. It can be combined with remicade, and the mesalamines to give this flare a knockout-punch.

2.) Is Entyvio/vedolizumab available within your country? It's worth a shot as it uses an entirely different mechanism of action than remicade & humira does. Lately, they say fail at least two different classes of UC biologic medications before considering a surgery. Remicade and Humira are sister meds, belonging to a single class of biologics known as TNF-alpha-blockers. Entyvio is what's known as a MADCAM1-blocker. There's Stelara/Ustekinumab that's being used off-label for UC, yet another class of UC biologic medications and also in clinical trials for IBD.

3.) There's always more things to try and if you're not in terrible condition and have a decent quality of life at the moment then there's a forest of alternative things to try. There's always more outside-of-the-box treatments available, if you want to try more things. FMT has some promise. There's a few novel things tried by research-hospitals, like tacrolimus suppositories which some have had some luck with. There's LDN as another off-label thing that some have had luck with. You can look for clinical trials for IBD within your country for more options. We have a lot of alternatives listed within our resources section that others have tried here.

Post Edited (iPoop) : 1/22/2019 1:14:16 PM (GMT-7)

iPoop said...
Certainly a tougher decision if you're getting along well now.

Pred is pretty much the devil, you know there is going to be a long term, irreversible cost to their usage, whether that is a type ii diabetes, glaucoma, or osteoporosis.

Reviewed your signature details further. Some thoughts.

1.) When you got hepatotoxicity from the Imuran, was reducing the imuran dosage and trying adding Allopurinol discussed? That combination often enables use of that med. It can be combined with remicade, and the mesalamines to give this flare a knockout-punch.

2.) Is Entyvio/vedolizumab available within your country? It's worth a shot as it uses an entirely different mechanism of action than remicade & humira does. Lately, they say fail at least two different classes of UC biologic medications before considering a surgery. Remicade and Humira are sister meds, belonging to a single class of biologics known as TNF-alpha-blockers. Entyvio is what's known as a MADCAM1-blocker. There's Stelara/Ustekinumab that's being used off-label for UC, yet another class of UC biologic medications and also in clinical trials for IBD.

3.) There's always more things to try and if you're not in terrible condition and have a decent quality of life at the moment then there's a forest of alternative things to try. There's always more outside-of-the-box treatments available, if you want to try more things. FMT has some promise. There's a few novel things tried by research-hospitals, like tacrolimus suppositories which some have had some luck with. There's LDN as another off-label thing that some have had luck with. You can look for clinical trials for IBD within your country for more options. We have a lot of alternatives listed within our resources section that others have tried here.

No I was never offered anything after the Imuran failed. A few weeks after starting it they tested my blood then called to say to stop it immediately & that was the end of that. I will ask my dr if the drugs mentioned would be any good for my situation.

We do have entyvio here but my gi is reluctant for me to try it so he’s frustratingly putting me through all the tnf alphas first. I have questioned him regarding this & he said he had little confidence in entyvio & I should use it as my last resort.

I will look into the other things you have mentioned, I willing to try almost anything before accepting surgery, thanks for the suggestions

naturalcurl said...
I have been using Cortenemas and Uceris Foam for at least a year and half, so aursruby's questions are of interest. We keep hearing about tissue thinning but have we heard from anyone that had this happen? What are the signs and symptoms and length of time of topical use that led to tissue changes? Trying to taper always leads to bleeding and misery.
I have been referred to a big teaching hospital and I will ask these questions and report back in a week. Ausruby, has your doctor given you advice about long-term use?

Let us know how it goes. Tissue thinning, and systematic steroid side effects are the biggest reasons. Even rectal-route steroids give us the risk of osteoporosis, type ii diabetes, and glaucoma among other things as there is a 10% absorption rate which makes them systematic on affect. The intestine has small blood vessels close to the surface that readily absorb all medications that touch them.