I'm flaring; I need some advice ASAP!

Yikes...how long until your appointment? I have never heard of those enemas....have you used them before and they helped? Maybe go to the ER?

That is crazy! What do they expect you to do in the meantime? How about making an appointment with your Family DR and telling him about the bleeding? You really need to be under a DR's care

I would call your doctor and explain your symptoms. They should be able to fit you in earlier as your situation is quite serious. Keep after them until you get in to see someone. Good luck.

Hi,

     I know how you may not want to keep calling your dr. but keep calling them.  My primary dr. is treating me for something else and every time I go to my GI she tells me it's not getting better.  She said keep pestering them because sometimes they will try to put you off.  Don't let them tell you to come back in three months.  That's exactly what I do until I get the right results.

    I hope you find a GI real soon and I hope it's someone good.

I would call your primary and explain the urgency... or call your old GI to try to at least get an emergent appt to get some medication until you get situated with your new GI.. or like an earlier post, go to the ER... If nothing else, the ER can give you lomotil or something to slow down the bathroom trips until you can get an appt. You may also try Lily of the desert Stomach Formula (aloe vera juice) that you can get at a health food store. I take that daily and it helped me almost immediately. It has helped me make more progress than Lialda alone. Good luck and sorry to hear your having such a hard time!

I just started taking Imuran last week. So far I haven't noticed any bad side effects. Of course, I am back on pred and experiencing all the side effects of that. I was really hesitant to start the Imuran, too, but mostly because I had to give up breastfeeding, if you recall. At first, I was just opposed to the idea of taking an immunosuppressant regardless of the breastfeeding issue, but I was just getting worse and worse and realized something had to be done. I also had a colonoscopy which revealed severe inflammation throughout my colon. I think my doc was going to hospitalize me after the scope if I didn't agree to take it.

I read through some posts on here about Imuran giving people back their pre-UC quality of life. That sounded good. Before my scope, I saw another doctor to talk about other options, and he told me if I did go on Imuran that it really wasn't as bad as I thought it was. For some reason, that made me feel better.

Because my inflammation was previously limited to my rectum, I hadn't been taking an oral 5ASA. I do wish that I had tried that in combination with the pred first to see if that worked before starting the Imuran. But I'm not sure I would have wanted to go through another course of pred and not have the 5ASA work to maintain remission afterwards. I would have then had to take pred again with the Imuran. I've already been dealing with this flare for six months!

I guess what I am trying to say is that it may be worth it for you to try the 5ASA route, particularly if you haven't been on pred much and aren't opposed to extending your time on it if it doesn't work. (I guess I am assuming your would be doing a 5ASA with pred?) You may also get to the point in this flare where you just want relief however you can get it. This seems to be what happened to me. It isn't an easy decision. Nothing about this disease is easy. Hang in there and keep us posted.

My doctor is making me take Prednisone with the Imuran. She said that the Imuran won't help me control my flare, only the Prednisone will. The Imuran is more of a maintenance drug. That's why I want to try the 5ASA route because I have to take the Prednisone regardless. I've taken about 6 months of Prednisone already; is that already too much? If the 5ASA route does not work it would mean I would have to take another course of Prednisone. That would be about a year worth of Prednisone. That's too much, right?

Gina -

You shouldn't feel pressured to go any route, you need to know the facts and tell your GI what you feel comfortable doing. I understand your GI saying you should start Imuran to help get you off of prednisone but what I don't understand is why you're not on a 5ASA. Are you still taking sulfasalazine? Sulfasalazine is similar to Asacol but you may find the more modern medications to be more effective. I do question whether it would be that much more effective that it would get you into a stable enough place to get off prednisone.

6 month is a long time to be on prednisone but I've seen people on it much longer. I have seen people do 1 month courses and others stuck on it for a year+ but I have heard people say that over 6 months is considered prednisone dependent. I was on prednisone for way too long and I finally had to start 6mp. I was able to taper off and I am feeling better.

The big concern for you is, you're on prednisone and you have been for 6 months, if you started tapering now, how much longer would it take for you to get off?
Have you been on a high dose for a long period?
Have you had trouble tapering?

If it's going to take you another 3 months to taper off successfully and you're going to be up and down with colitis symptoms, ultimately, you may be better off starting Imuran now because if you start it in 2 months, it could take 4 months to start helping regulate your immune system... next thing you know, you've been on prednisone for a year!

I wish you the best of luck in healing.

I would strongly consider just going to the ER. I am sure they will admit you if its that bad and you will get a GI as a consultant. Acute colitis can progress to toxic megacolon which is not a place you want to be.

I've never taken pred, even when I had bloody diarrhea 20 times a day. Another GI stated that he would have put me on prednisone when I had to see him instead of my GI who was called away on emergency. I told him I was grateful he wasn't my doctor. He put me on steroid foam enema for a few weeks, and yes it' helped. I haven't used it since, only the 5ASA enemas. My GI smiled wryly when I saw him a few weeks later. That was 21 years ago.

No, it's not "normal" for doctors to give a patient pred initially nor without the respect to try the 5ASa meds appropriately.

point being..prednisone will not sustain you for flares....and the fact you were allergic to sulfasalazine doesn't mean it's the 5ASA.

And I have to ask you why you prefer to suffer the serious side effects, some of which can last your lifetime.

q

Please go to the ER. The same thing happened to me. I couldn't see my GI for 8 weeks (my life was in the hands of the woman that answered the phone). My family doctor was incredible, though, and after taking my blood which revealed my iron count was 70 (normal is 120) that I should go to emergency. Spent 4 days in hospital, had blood transfusions and was healed. I had never felt so good. Now after close to months my symptoms are slowly returning. But, now that I am in the system. The GI who treated me in the hospital (not the my original) calls me back when I need to speak with him - even to adjust medication. Go to the ER!!!

Gina, I'm so sorry you're having such a hard time. It doesn't help that the doctors are causing you more stress! My 2 cents worth on the med question....I was on prednisone for nearly 8 months with not much effect. All the GI's I spoke to wanted me to start Imuran but I resisted and begged them to let me try Pentasa first. I did and after a few weeks was in remission. As much as I wanted to stay only on Pentasa, the GI told me that it will not keep me in remission, and if I wanted to avoid steroids in the future, immunosuppresants were the way to go. So It has been a week since I started Imuran and no problems to report!!
The way I see it, if Imuran can lower the risk of relapse, then bring it on!!! As long as the Gi's monitor your bloods, all is good. My GI said to look at it as an insurance policy! Besides, it may not be forever. I'm going to try Fecal transplantation soon and hope that this can help eventually get me off the meds for good. One lives in hope!!
Whatever you decide, I wish you a speedy recovery.