Hydrocortisone (steroid) enema not working....

Well, just looking for experience or opinions.  I switched from Proctofoam (which I used for weeks and not much help) to hydrocortisone enemas which are stronger.  I have been using about 2/3 (all I can get in) for 8 days.  After three days everything started to get worse.  I did not use one last night due to more blood, sore bottom, etc.  Each day past the third more blood/mucous/bms.  Mostly what I have noticed is more blood and mucous in morning (used to have little at beginning of first bm and then less and less.

Also, have had blood/mucous (no stool) throughout the day - not a lot but never had that before.

Ok - so any experience or opinions would be appreciate.  I will continue tonight and call my doc in a couple days if all remains same or worse.  Also, having throbbing in rectum.

ElaineNY

"Resistant to steroids" hardly seems possible as I have not taken any oral and only Proctofoam before this enema.

Anyway, thanks and I agree on the immune suppressants although doctor has only mentioned steroid "burst" next and/or antibiotic (which I took at beginning for 3 days and got much worse! (Flagyl) There should be something out there for me as scope showed "mild -confined to rectum"

Truly upsets me to be so sensitive to medications of all kinds.  For instance, I cannot take narcotic pain relievers of any kind that I have found and only take 1/2 Xanax for anxiety (and sometimes that makes me feel loopy).

ElaineNY

Thanks Scarlet - support is very important.  I was tested for c-diff infection at the beginning and was negative - who knows what doctors think?

The idea of injury of course is always possible but I have been careful and used extra lubricant each time.  I have no problem retaining the enemas all night - just getting all of it in is hard as I have to do it on the toilet. 

Today I feel like I have to "go" all the time - nothing but gas/mucous/blood.  Never had this happen before.

ElaineNY

Yes, I guess each day feeling worse - depends on what you call "feeling".  Last night was the first night I did not use the enema since starting 9 days before.  Each day after the third day I have had increasing blood/mucous/feeling of not emptying bowel and throbbing.  Also, when gas and when I do go I can force out a little blood and mucous - that never has been the case. 

When first diagnosed I went for scope because of bloody in my stool and some diarrhea - not really much.  I think the Align has stopped the diarrhea.  Once in a while I had left-sided little pain (kind of where your ovaries are).  Doctor said I had left-sided UC - new scope months later - after trying all 5ASA's showed "confined to rectum".  Proctofoam went well -but all remained about same - blood/mucous in morning first - then maybe one or two more stools - firm and fine.  Doctor said the only way to be in remission is to HEAL the ulcerative part - stop the bleeding, etc.  Proctofoam was keeping it about same as far as I can see. 

I am tempted to stop everything but Align and see what happens.  I coudl live with what I had before.  Read that it takes years to develop cancer - and I would know if it got a LOT worse where I had to have medication.  I am 68 and just want to get on with life while I have one.

ElaineNY

I went in to see my GI a couple months ago and I mentioned that I am still having D 3xs a day but no blood. He seemed resigned and asked me, can I live with that? And yes I can truthfully because I don't FEEL bad, I don't hurt when I go the bathroom, I just have the D and cramping. So it is up to you on how you want to proceed with your care. If you feel that these enemas are causing you more harm then good then it is your perogative to stop them. However, since you are bleeding, this can complicate things. If you do not take any medications, you may have to be extra vigilant in your blood counts to be sure you don't become anemic. My grandmother has intestinal bleeding due to fragile colon walls from radiation treatment. She is almost 90 years old. But because of her age, there is nothing they want to do for her because she may not respond well to certain medications. So we just take her in frequently for blood testing and if her blood count gets to low, she goes in for a transfusion. So I guess what I am trying to say is that sometimes you have to overlook some things to have a better quality of life but as long as it's being monitored. Did that make sense? lol

It always breaks my heart to hear when people are doing so poorly and there does not seem to be anything that really really helps ... but I have to agree that one must find his/her level of feeling comfortable and well. You know, in the past I often heard from my doc that more than three bms a day is considered diarhea (I will never learn how to spell this word!). I don't care like Sherry said. Heck, I wouldn't even mind going to the can five times a day as long as there is no blood and no pain and no urgency involved. So Elaine I understand when you said that you just want to stick to the Align and see what happens.

I have been accused in the past of performing "stool cosmetics" by my doc and that means that I was complaining that my bms were not perfectly shaped and stuff like that. I guess that is the point: You may be able to live with certain circumstances where your doctor sees more oportunity for improvement, but if you feel well - that is what matters.

I wish you a speedy recovery Elaine and that you start feeling great as soon as possible. I keep my fingers crossed.

Hi Elaine. I agree that you can become sensitive to steroid topicals...sometimes if the area is already in a compromised state, the steroids can cause the situation to become more delicate.

Considering your situation....maybe you would be a candidate for vitamin e suppositories...not enemas?
I don't think it'll help the diarrhea...but it seems that you're extremely limited in what you can take.

The Pepto is still a salicylate...maybe that in part is causing some of your symptoms..considering you're sensitive to salicylates?

I still think that you could consider using Metamucil smooth...it's still more soluble fibre that could help your colon in general to absorb some of the excess water. Maybe that plus an antispasmodic would help rather than the imodium....

I'd still try the above than go for a prednisone course....

Something to consider, anyway.

quincy

Hi Elaine,

I'm sorry to hear about your pain in the butt (literally). I have had crohns for 29 years and part of my problem is an ulcer the size of quarter in the rectal area. I to used cortisone foam, but I also used salofalk suppositories with it. The two together did help me for a few years. I must say though that remicade healed it completely. After 1 year on remicade my GI scoped me and the ulcer was then scar tissue. It is a huge decision, but it did help me. I also noticed that you take philosec for your GERD. Have you tried losec 20? I just wonder if that med isn't helping you anymore and the acid is causing your nausea. That happened to me so I just thought I would mention it. I find taking nice hot bathes sooths my bottom and helps my joint pain. Please keep us posted as to what your Dr. says.

I hope you feel much better real soon.

Julia

Elaine, I am in a similar situation with the cortenema, after 16 days they are making things worse instead of better. Perhaps if you taper them you'll see improvement - the feeling of getting worse may be actually a side effect that will go away if you cut back? I guess a Dr. would know, although mine sure doesn't have a clue.

One thing I might advise folks is to avoid Flagyl, which I swear triggered my current misery. Dr. thought I might have a bug or something not showing in stool tests, giving me a bit of yuckiness. Taking Flagyl turned a minor set of symptoms into chronic liquid D, and over a year and a half later I am still a mess.

Well, I want to thank everyone who responded.  Obviously, we all have different experiences and opinions and forms of the disease.

Julia - I think Prilosec prescription is the same as Losec.  It takes all my acid reflux away.  Actually, my nausea is very seldom now, thank goodness. (most nausea/sweating/fever/headaches, etc. were from the 5ASAs which I will not take again)  Also, doc said my ulceration in rectum is very small but sure can bleed.  I don't have hemmroids or fissure.  Scope in November and apparently the improvement from May was due to 5ASAs while I was TRYING to take them.  I cannot get in and out of a bathtub to take a bath - have to shower.

bbc - I have to administer the enema on the toilet - have been able to use about 2/3 or 3/4 each night and stay on left side for an hour and retain all night - no problem there.

Bottom line seems that when I look back to November everything including bleeding and mucous is worse.  No diarrhea but constant feeling of having to "go" which I NEVER had before. 

Decided to use the enema tonight and see how it goes and maybe skip one more day and try on Wednesday and then call NP.

Thanks everyone!  ElaineNY

bbc - very little leaking since I have a very strong muscle there!  LOL  I am about 3 steps from the bed and get there as quickly as I can and lay on my left side and listen to the radio.  Anyway, should 1/2 even used every day for 8 days cause worse symptoms - more bleeding/mucous/discomfort and feeling of having to GO?  I just can't believe MORE blood is right after using it for 8 days - started getting worse at 3 days!  Definitely ask my NP if I should try another week or as long as I can.  I need to get out this week - especially to hospital with my husband - this is hard to do with these symptoms as you know.

By the way, reading other posts - can the steroids in the enemas cause pressure in my head, arm muscles ache, etc.  I am 68 with arthritis but this has come on this week.  Thought it was the cold but staying inside all but one day. 

ElaineNY

emory - nice to hear from you and that you are doing ok.

I see what you are saying about steroid enemas.  I used the foam a lot of weeks but it is very weak - only 1% steroid.  What is the use of a suppository or enema or foam if it is not healing our ulceration??  I just don't get it.  By the way, I asked about a suppository with same ingredients as enema and my NP said there was none.  I retain them much better and hoped they would help.  Also, I guess my UC goes up past the rectum too much for suppositories.

ElaineNY

bbc - thank you so much for your support.  Yes, this is a stressful time of year.  I don't get out at all without my husband - it is icy and I can't walk with my bad knees.  I take Xanax and have upped to the maximum dose I can handle at least for winter.

Today has started out back to where I was before the enemas 10 days ago - hope that is a good sign - I just was hoping for more by now.  I NEED the knee surgery and wanting to deal with UC and knee surgery all at once - not sure I am up to it yet!

ElaineNY