New Member

Hello to everyone, I am new to the site. I was diagnosed 10 years ago and did fairly well for 8 years. Taking small doses of Prenisone and going back into remission, Not so for the last 18 months. I was on 60 mg of Prenisone and became steroid dependent. while tapering me off I started Remicade and did well for 6 months after a hospital visit. I took an antibodic and came out of remission quickly unable to get back in. I am also allergic to all sulfa drugs even rectally. I had a terrible reaction to my last dose of Remicade and it did't work. So disgusted today after 18 bathroom visits. I am currently onno meds. May start Humera.  Any ideas..............Carmel

Carmel - welcome to HealingWell! Sorry you had to find us, but glad you did :)

So, let me get this right - no 5ASAs at all for you. Remicade is out. Did you try 6MP or Imuran? What about steroid enemas?

Since it looks like an antibiotic has caused your issues this time, have you considered a probiotic? Many of us use them to repopulate the good flora in our guts. Antibiotics kill them of which can cause the dreaded D!

Any fiber supplements?

I hope something works for you soon!

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Pan-colitis and GERD diagnosed May 2003

 

Asacol 12 per day,  Azathioprine 75mg, Rowasa and Canasa as needed

Aciphex, Effexor XR, BCP, Rhinocort nasal spray

Forvia and a Probiotic

 

Osteopenia (hip and spine) from prednisone use.  Started Azathioprine because I was steroid dependent.

 

Co-Mod for the UC forum

Keep HealingWell running smoothly:  www.healingwell.com/donate

Thank You Kim123 and DaKotagirl for responding to me. I wll try the dietary suggestions. I have never been on Imuran OR 6 mp. What about the hair loss from Imuran? I am currently trying the steroid  foam because I can't hold the enema.I never heard of fiber with UC please tell me more. I do take an over the counter Acidolphis. Is that enough? I will try anything. Thanks for listening.     Carmel

Hi Carmel,

I can't take the sulfa drugs anymore either. I stopped them cold turkey and went into my worst flare ever (started last month). After 1.5 mos on predinsone and 3 weeks on hydrocortisone enemas, I have gone from 20-30 times a day down to 5 to 10 times a day, still not good but much more manageable. At first I had to do the hydrocortisone enema's during the day b/c nights were much worse for me and I could hold them in for at least a couple of hours, now I can hold them in at night for about 6 hours. Maybe after being on the foam for a while you will be able to hold the regular ones???

I just started Imuran a week ago and have remicade tests pending. I am so sorry you are going through all this, I know how terrible it is to not be able to take the sulfa drugs when they worked and worked well. Imuran can take a few months to work though, which is why I may go to remicade.

What happened to you, that you could not take the sulfasalazine? For me it is believed to have cause my kidney disease.

I don't know about hair loss, but I am scared.........It's only been a week for me.

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Beth, 32

Carm - I found the hair loss on Imuran to be pretty minor, especially when compared to the hair loss I had on prednisone. Usually, once your body adjusts to the Imuran, the hair loss stops and the hairs grow back :)

I take Fibercon to help keep things more bulked and regular. I've also used the Benefiber caplets. However, when flaring with blood, I make sure I'm eating low residue foods and make sure my fiber is soluble - not the "scratchy" insoluble stuff.

I like to switch my probiotics every few months. Usually because I've heard of a new and possible better one than the one I've been taking. I also think that many of them have different flora in them - so maybe change is good for my guts??? The ones I've used have more than acidophilus in them. The one I'm using now is a Jarrow EPS formula. Several people recently have had luck with Pro-Bio. I've used Culturelle and the GNC brand in the past. I've been trying different ones to increase the CFU counts.

Are you feeling any better recently?

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Pan-colitis and GERD diagnosed May 2003

 

Asacol 12 per day,  Azathioprine 75mg, Rowasa and Canasa as needed

Aciphex, Effexor XR, BCP, Rhinocort nasal spray

Forvia and a Probiotic

 

Osteopenia (hip and spine) from prednisone use.  Started Azathioprine because I was steroid dependent.

 

Co-Mod for the UC forum

Keep HealingWell running smoothly:  www.healingwell.com/donate