How do you know when to go to the hospital.....?

Folks,

I have already gone 8 times this morning. Blood has increased dramatically. All of this got worse after I saw the new GI at Beth Israel. He took me off the asacol, told me to taper the hydrocort enema (even though I still bled 2x a day with an avg of 3 BM's) and switched me to sulfasalzine. (4 pills 2x a day). This was on 12/24.

This morning I called my GI and have not heard anything back. I know 6MP is the next step but I am bleeding so much and have a lot of pain in my stomach - spasm pain when I go.

I just left my old GI a message...because she usually gets RIGHT BACK TO ME. I am going to be embarassed to tell her I went to someone else....but I need help bad.

Any advice?

I have not taken the sulfasalzine this morning. I did a hydrocort enema last night too.

I feel like I did a year ago when I was hospitalized....

I've never been hospitalized, even when going 15-20 times a day with tons of blood. If I were having severe pain, I would go but that's never been the case for me.

I have had severe flares and pain like described, but only went to the hospital when I was severely anemic and horribly weak. Then I only stayed two days. Even when we were talking surgery (before I got 5-ASA protocol) I was not admitted, and didn't want to be. I'd rather suffer privately at home.

The ER can be miserable, I hope you can get admitted without having to go through the ER if you want to be hospitalized. Is there anyone with you?

I went to my old GI this afternoon since the new Dr. at Beth Israel never called me back or didn't for 6 hours. My old GI said that of course I would get worse since he decreased my meds (tapered cortenema and put me on sulfasalazine from asacol). She said to go back to asacol and my enema to see if I get better or get back to my baseline where I was before I saw the new GI who switched my meds. She said my next step is 6MP...but I have to willing and ready....which means that I would have to not try to conceive for a few years....WHICH I AM NOT READY TO GIVE UP ON.

Anyway, thank you all for your replies and support. I am not sure what the flip to do. Stay with old GI who thinks cortenemas are not that bad.....and who wants to see me get pregnant...or new GI who said cortenemas are terrible and wants me to go on 6MP for my proctitis.

Its like a double edge sword. I am soooo depressed right now and sad and lost and confused.

wishful, I am so sorry to hear how sick you have been, and will keep you in my prayers. It sounds like your 2 docs are making you even more confused. It does sound like your old doc is a bit more caring, but that is obviously a choice you have to make. You take curcumin, I would try it in a drink form, Haldi is what I drink, and I think in the liquid form it is more effective/absorbable, you can find it online or at most whole foods markets. Good luck.

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yuckygut

diagnosed 1998

now off prednisone and colazal

drink 1 Haldi daily to remain in remission

WishfulMA said...
Anyway, thank you all for your replies and support. I am not sure what the flip to do. Stay with old GI who thinks cortenemas are not that bad.....and who wants to see me get pregnant...or new GI who said cortenemas are terrible and wants me to go on 6MP for my proctitis.

I'm puzzled. Why is 6MP - a powerful, systemic immunosuppresant drug - less dangerous than topical, localized steroid enemas?

6MP and Imuran are not as bad as they sound. My GI in Michigan - whom I loved! - told me he has had several patients conceive and deliver healthy, full term babies.

Enemas are great when you can use them - they deliver the meds right to where needs them and you absorb less than an oral medication. I think the second doctor was a idiot to tell you to come off of them - especially for proctitis!

I find I fear most what I don't know or understand. I would suggest going back to your old docs regime (give it a week to kick in) and starting some research to see if 6MP is as bad as you think it is. I know there are GIs out there that are okay with women having babies on these meds - but YOU need to be sure about it.

Also - you are an extremely caring person - an adopted child would be blessed to have you! So whatever you decide to do, it will be okay!

Feel free to visit the Crohns board to talk to women who have had babies on Imuran and Remicade and Humira

I tend to disagree with a topical, local steroid application being worse than a systemic immunosuppresant, but all GIs have their opinions and they vary widely, in my experience. A healing implant enema, as described in the book Listen to Your Gut, might be an option for you. You may also find FissureHeal helpful since your diagnosis is proctitis.

I'd also suggest trying a different probiotic as Primal Defense contains spore forming soil based organisms whose long-term affect is unknown and I believe there are other ingredients than can make symptoms worse for some IBDers. After an initial improvement, I became rapidly sicker on PD and felt better almost as soon as I stopped taking it. Asacol also has a record of making some people feel worse and bleed more. I actually did much better on sulfasalazine, but it sounds like you might be allergic to it. It may be worth asking your doc about another ASA.

Princesa - i used to take VSL#3 and stopped and switched to primal defense. What probiotic do you recommend? I have a Rx of colazal here at the house....I wonder if i should switch to that?? Though I tried that before as well.