GI started talking about surgery for first time.

:( I'm so sorry to hear about the horrible troubles you've been having! But some people are not so lucky when it comes to this DD - they can have a particuliarly aggressive form. If it comes down to you having surgery, of course it would terrify you! That is a major surgery, however, you have to look at it like this too - if you don't have your large intestine, you don't have your disease and you can get your life back. It's not a pleasant thought, nor experience from what I understand but try not to worry about that until the time comes. I hope if you do have to go on Remicade that it can kick it to the curb and then you won't have to worry about surgery any time soon.

I am keeping my fingers crossed for you.

Cammy, I was in one level or another of flare from the summer of 2001 until the spring of 2006. I was in the bathroom 10-25 times a day, constant bleeding and pain. Meds - my doc tried them all, with no remission. In March 2006 I started Remicade infusions. I've now been in remission since April 2006. If you need to go to Remicade, I hope it works as well for you as it has for me.

Hi Cammy,

My GI recently brought that up to me as well and I nearly fell off the exam table, I was like, whoa.....I don't even want to consider that. It's scary that there are so few options out there and I was terrified for a couple of weeks too.

The prednisone took a couple of months to start working for me at 60mg a day (I got worse after starting it - though I had to stop the Asacol so that is part of it, but still...) I went on Azathioprine Oct 16 and have been on it for 3 mos now, also hydrocortisone enemas really helped sort me out and they put me on cipro as well. Now I have 1-2 bm's a day, no blood, urgency is minimal but my stools are still stringy and not completely normal (i'll take it).

There are other options still, I hope they are able to get the right combo of meds to help you. Try to stay positive, ez to say, I know....

I would keep the doctor that told you that you should not stay on prednisone longer, he is very wise. Prednisone is not to be taken long term for treatment of UC. Have you tried Remicade? If you don't want surgery Remicade would be your next treatment option.

Sue

Hi ScottishCammy, I too was very sick when I started Remicade and that was over two years ago. I'm doing really well and considered to be in Remi remission. And yes, the "surgery" was discussed with me too! The best part is that I know it's an option for me, and that if down the road I the surgery, so many folks have had such success with it, I know I'll be fine. Take care.

My GI didn't put me on Imuran and went straight to Remicade because he said it takes too long to see a change with Imuran, up to 3 months... you have only been on it since mid January, right? (I think you accidently put Jan instead of Feb on your post when you said they raised it to 150 mg 5 of Jan, also that you may have a colonoscopy 12th of Jan?? you could edit it if it is wrong.) Anyways, I would think that giving the Imuran more of a chance would be wise, since you are on Prednisone as well you may be able to hang on and wait and see if the Imuran kicks in. I am not a doctor by any means and I do not know the extent of your UC, but it seems like your doctor is jumping the gun a little. It just seems awfully soon to consider surgery being diagnosed only a few months ago... Now that I think of it, my GI has been mentioning surgery to me for years. Sometimes I regret I didn't do it the first time he told me I should, I wouldn't have wasted so much time in the bathroom and in pain and feeling so horrible... But I keep hanging on in hopes of a breakthrough in medication or a miracle of remission. Looking back, I really don't regret not having the surgery yet. Things have been tough here and there but I still have hope that I will make it without surgery. And if I don't, so be it. Have you tried making a food diary and probiotics and things like that? Try not to worry too much about everything, you will be ok. Don 't make yourself worse by stressing about this. Take care of youself the best you can, get lots of rest, and try to relax. Worrying too much really can make it worse. Oh, and Remicade works pretty well for a lot of people so keep that in mind. :)

Hi, the consultant told me to go up to the 150mg azathioprine when I seen him yesterday (5th) and if/when I get admitted on the 12th he will want to do a colonoscopy as well.
I really just hope the drugs do the trick. Thanks.

So, if symptoms worsened after the dose was halved, it doesn't sound like you have a problem with ASAs. I don't understand why he took you off it.

Alot of GIs will use pred to try to get things under control until an immunosuppresant can kick in. But if you're in really bad shape, a lower dose of pred isn't going to help. Again, I would suggest you get a second opinion on your treatment.

You might also consider an enteral diet for a week or two to try to give your colon a chance to heal. Basically, it means going on a liquid, predigested diet. Studies have shown it to be as effective as steroids for bringing symptoms under control. Check out the book The IBD Remission Diet if you'd like to learn more.

Of course you can tell I'm a new member------I've read so much about infusion.  Exactly what is it?  It sounds very invasive & you have to go to the hospital to get it.  Is it an IV or is it put directly into your intestines?  I have an appt. with my doctor tomorrow & will ask many questions thanks to the many things I've read on this forum.  I'm just coming to the conclusion that I have to take charge of my health issues & not rely entirely on what my dr. does or does not tell me.  At the present time, I have experienced terrible flares, last nite being the worst as it lasted 5 hrs. & every hr. all nite long.  I feel that I have to actually break down crying or acting like I'm dying before the dr. takes my condition seriously & does something that will work for a change.  I'm on Prednisone, Nexium for 3 wks. now & Asacol for over a year.  I tell the nurse & doctor what I'm going thru & they prescribe meds but nothing seems to be improving.  Am I not presenting my case properly?  What should I do to get quicker results so I can live a normal life?

Lindy, and infusion is medication given through an IV. Remicade is given this way, and some of the newer drugs that are being researched also are infused. They're usually given at the hospital or an infusion center. I get mine at my GI's infusion center. It's very comfortable: big soft recliners, quiet music, wireless internet access. It's a small unit and very quiet so you can read, work on your laptop or take a nap.

You might try keeping a chart of your bathroom trips. I found I was never able to get an accurate count unless I did that. It also helps to document how often you have bleeding, etc. I used to take mine to my GI visits with me to help me answer his questions.

Do you know what part of your colon is involved? Sometimes rectal medications are helpful for proctitis. There are also other 5-ASA's which work better for some of us than Asacol, principally Balsalazide (Colazal.) Immunosuppressants such as Azathioprine (Imuran) and 6-MP.

If you feel your GI isn't listening to you, by all means seek a second opinion. You'll find that a lot of us have been through more than one GI, as we didn't like the way the first one interacted or treated us so we went and found someone new.

Cammy - get onto the biologics asap if u can (Abatacept, Infleximab, Humira).

I just got my 8th infusion of low dose Abatacept today and my doc FINALLY told me he believes we've managed to get the colitis under control and I'm on the up and up now.

I VERY firmly believe that if the prednisone/5-ASA's aren't working then you need to try the biologics and from my experience and the others with me in the Abatacept trial, they WORK.

In 8 months (8 infusions) I've gone
- from 33 BMs in a 24 hour period and 70mg of pred a day with 8 colazide and 100mg of 6-MP;
- to 8BMs in a 24 hour period, no prednisone and 4 colazide per day with 100mg of 6-mp.

Since I was able to get off the prednisone 2 months ago the improvement per infusion has accelerated noticeably and today's news from the doc who once told me "I am strongly recommending surgery... I can't tell where the good tissue is due to the damage in there. We might be able to save it, but its going to be a long and painful road."

Suffice it to say I chose to persevere and 8 months later its paying off.