now what?

Hi,
So, I've had pretty active UC for about a year and a half. I am coming off of a terrible flare that caused a lot of weakness, weight loss, and I'm pretty sure I'm anemic now. I will go in for labs in a week or so when I meet with my GI doctor to discuss the next step for me. about a month or two ago they wanted me to try immunomodulators or biologics because I've been up and down on prednisone for about a year. After reading all the side effects of 6mp, imuran, humira, and remicade, I decided to try some alternative methods. In fact, I went running in the other direction!!

A new chiropractor/dietitian put me on Ultra InflamX medical food shakes and an elimination diet for about 3 weeks. This is when my flare got worse. I had increased diarrhea and eventually more bleeding. I stopped the shakes and felt better, and now I'm back on 30mg of prednisone as even my chiropractor said it's the only thing to get a flare under control.

I guess I just want some feedback and perhaps others' positive experiences with these drugs to know if I really need to be afraid or should I give them a try. From what I've read, they just lower the immune system and put me at risk of getting sicker. I'm a mom of three year old twins and can't afford to be sicker than I already am! My chiropractor made a good point that we need to heal and strengthen the immune system (which is mostly located in our gut) rather then suppress it and in some cases remove it! I feel like I'm stuck between two worlds and am not getting well with either approach!

I appreciate any feedback or advice. Thanks!!

littlelolo:

I was at the same point you were a few years ago.  I didn't even know about the immunomodulators or biologics at that point.  I was taking on and off again Prednisone and Asacol for many years.  My UC spread all over the whole colon and boy it was active.  I eventually went on Imuran or azathioprine and it helped heal my colon.  I am not happy about taking this med but the alternative it to surgically remove my colon.  I will the meds first and if those fail, out comes the surgical knife.  As far as damaging ones immune system, I see it a little differently.  Our immune systems are on overdrive, they are too active!  They need to be calmed down.  My immune system was going bonkers and attacking my colon for years.  Now my colon is almost completely healed.  I am a dentist and a Dad to three kids and am happily married.  I have had no problems with taking this medication.  I am not anymore sick than I was before, in fact I feel better because I am not constantly losing blood.  I feel like I more energy.

So, in the end one has got to make some personal choices.  Mine was to go on Imuran and get my life back while keeping my colon.  If things change for the worse I will consider surgery but I just wanted you to know that I am happy with my decision to go on an immunomodulator at this point.  Hope this helps.

MyUC

Thanks! I have more questions . . . How long does someone typically take Imuran or 6mp? Is it forever to stay in remission, or until remission is reached? Does it have more side effects the longer it is used? The other issue is I'm not sure I'm done having children. I know I can't take these drugs and be pregnant or nursing. However, my UC disappeared while pregnant and nursing my twins.

It's true, I need to make some major decisions. And yes, our immune systems are on overdrive. I agree they need to calm down, just not hit rock bottom.

littlelolo:

My understanding is that Imuran or 6MP is for life.  UC is a chronic disease and thus the chronic use of medication.  However that said it is common for people to downgrade their meds and lower their dosage.  For example I started on 200 mg of Imuran and now I have lowered it to 150 mg.  Things have been going great.  I have heard of some people going on Remicade to get their system in check, once in remission they might be able to go back on just the 5-ASA meds.  I saw a GI doc that rec. Imuran.  When I asked him about it's safety he replied that he has been giving his daughter Azathioprine for the last 12 years because she has Chron's.  He said he would never give his own child or anyone else's child anything that he thought wasn't worth taking.  My current GI doc who I really respect works out one the most respected university teaching hospitals in the country.  The GI dept. has about 1500 patients on 6mp or Imuran and none of them to his knowledge have ever had a serious complication, ever.  He said for some they just don't work at all or it makes them sick but for those that it works for it works great and for a long time.

I am not a pusher of these drugs.  I am just trying to say that they have their place in the treatment of UC.  I have accepted I have this disease and I will fight it for myself and for my family's sake.  Hope it helps.

MyUC

My GI doctor said the long term side effect of prednisone are far worse than Remicade and I can attest for that. Prednisone has given me osteoporosis and high blood pressure.
I ran the gamut of meds and now am facing surgery on June 28th for a perm. ileo.

Thanks everyone for these insightful and supportive replies!

MyUC, I think it's great you've found a GI you can trust. I think I need to build a better relationship with mine as I've been in denial and a bit of a stinker so far. Imuran sounds promising and I need to accept that this is for life.

imagardner2, I have been gluten and wheat free for more than 6 months now and it has helped. I have been only dairy and soy free for a few weeks and I'm not sure about these things, although I'm willing to be done with them if it would help me feel better. I do not have a gluten free kitchen, however, and I wonder how sick I can become from preparing PB&J for my kiddos or accidentally eating my food after handling their Cheerios, for example. I also follow a very strict, weighed and measured food plan as part of my recovery from an eating disorder so for me there is no deviation. I don't mess around with my food once I've committed to eating a certain way.

Quincy, I've never been offered the enemas. I think they would work, however I know that my colitis has certainly spread in the last two weeks. I had pain well up into my abdomen, which means it had reached more of my colon, similar to a terrible flare exactly one year ago.

Dr-A, So great to hear your experience. I really want to be one of those people that found remission naturally as I hate taking meds and putting weird, man-made things in my body. I've been realizing, however, that the friends I have who see homeopaths and other natural doctors also do not have autoimmune disease. This is different and quite serious. I think my chiropractor might be better trained to help me with relaxation and stress relief rather than treating these acute symptoms. I hate prednisone terribly, but haven't been off of it enough to know any different. I do appreciate my GI's insistence that I be done with it!


Thanks everyone else, too! I'm trying to be open and not take for granted how quickly this evil prednisone is making me feel better! It is no place to be!

Get on the SCD, or at least give it a try. I'm flaring right now, and am starting over. This is what I get for cheating on the diet for the past couple months.

oh also carrots and parsnips have a ton of sugar in them. I did a juice fast on carrot juice once. and i flared majourly.