Stoped steroid supposetories, symptoms back, what to do?

Hi Everyone,

I've been doing hydrocortisone suppositories for a month, then started tapering (first week, every other day, second week, every two days, then stop). When tapering, I noticed a pattern of relapse the first day, but later everything was back to normal. I actually noticed improvement when tapering. I had one solid bm per day, less pain, less gas.

Last Monday I stopped completely, and unfortunately on Friday noticed that my symptoms are coming back. I have more gas, bloating and bm is more loose. Also, Im not sure if this is relevant, but last weekend I started adding phylum powder to my diet. Is it possible the symptoms are back because of that?

Im not sure what to do now. Should I go back on the hydrocortisone suppositories? For how long is it safe to take them? Should I wait a bit more and observe the symptoms?

Maybe I could give the suppositories another chance, while doing a slower taper? Or maybe try Rowasa? Im really scared of starting another level of drugs.

Im scared of the side effects, possibility that the drugs might not work... If I ever need to get a surgery, my immune system will be weak, so the risk of complications might be higher. All these things are running through my mind.

Thanks. How long do immunomodulators take to work? What is the success rate?

"last weekend I started adding phylum powder to my diet. Is it possible the symptoms are back because of that?"

if you haven't stopped taking it, do it now - those symptoms can be caused by it -

why did you start using it ?

i clearly said can, not are -

Spoke to my doc today. He said to start doing the supps again, three days every day, then every other day. I have an appointment with him on Thursday. Will push for rowasa. I also have scope scheduled next week.

I dont think the psyllium powder is causing this, as initially I noticed improvement from it. Who knows though... I'll try stopping it.

I just don't know what to do anymore.

"I dont think the psyllium powder is causing this, as initially I noticed improvement from it. Who knows though... I'll try stopping it."

i'm sure you're right but it's easy enough to find out - and definitely get on some type of enema -

how long and why have you been using the Enterosgel ?

hmm, not sure the addition of psyllium powder would be something i would do then for sure, since it also acts to solidify things - sounds like maybe too much bulking going on -

and while we're at it, the boswellia ?

see my thinking is eliminate all the possible contributors, even if you have been using something a while - most supplements should not put your health at risk by NOT taking them - but they may in fact be exhibiting some unwanted side effects while using them - especially the more different types you take -

just my thoughts -

Rowasa and Cortenemas for last 30 years. Rowasa for first 20 or so years as needed.Last few years disease has had periods where i needed Cortenema. Always has worked well for me

k- for my last flare I've was on cortenemas for over over a year. On /off but mostly on. Compared to pred I had no side effects. Just some random things like night sweats in the beginning. A little moody when tapering. My GI said prolonged use isn't the best but compared to pred or inflammation it's a no brainer. I'll be off them this week finally. He also told me they don't thin the skin like pred. At first I was hesitant but to be honest I've graduated from mesalamines to remicade and 6 mp. I just wanted to do anything to stop flaring at a certain point. My look was to do what I need to get into remission then back off meds as needed...in time.

Good luck. Much love.

Katerina, if you don't mind me asking, what suppository were you taking and how much did it cost? I may be going on those soon, but I've gotten all kinds of quotes on prices.

So an update on my case. I've seen my doc yesterday. he said to start doing the steroid sups again every 3 days, before my scope next week. Not sure about the prognosis after that.