New here, but not to crohn's

[kpratte]

New here, but have had crohn's since 95'. I've been a somewhat textbook crohn's case, got it around 25, have occasional flare ups and have tried the myriad of crohn's drugs: pentasa, sulfur, asacol, immuran, prednisone, entocort, antibotics, and probably a few I've forgotten. Predisone works pretty well for me, but the side effects are many, insomnia, join pain, bone density problems, skin issues (acne, dry skin and more).

I think I've had every possible diagnostic test at least once, most several and have had two surgeries: anal fistula back in 95' (what a pain in the but. :ylol2: ) and resection about 2 years ago.

I started back up with issues about 1.5 months ago with a trip to the ER after I had an uncontrollable bout with the big D and vomiting. Xrays didn't show a blockage but of course I hadn't eaten anything in practically 24 hours by the time I had been seen.

Back on prednisone and trying to come up to speed on today's latest treatments as my GI feels that I should be some maintenance medication other than iron, calcium, and acid reducers. He's talking remicade, humira or immuran and he's leaving the choice up to me, oh joy.

- Ken

 

[D Bergy]

It is hard to get enthusiastic about yet another medication given your long history of Crohn's. Some people find one that works every so often. I hope that what ever you end up using works for you.

I am kind of surprised that you were not put on a maintenance medication a long time ago. My doctor wanted me on Imuran right out of surgery. I may end up on it yet, but not until I have no other choice.

Let us know how it works out. Maybe your new medication will help you turn the corner on this unpredictable disease.

Good Luck

Dan Bergman

 

[Kev]

Hey Ken.. welcome to the forum. Of the 3 choices, my first would be Imuran. But it's off my menu (allergic). since you've been on it before, allergy isn't a consideration. I am a bit surprised that having started on it, you came off it. that doesn't jive with the 'short & sweet' details my GI gave when I went on it (or tried to - a long story). My understanding was that I would go on it, and stay on it... remission or relapse.
Unless the routine bloodwork led to concerns re liver, kidney or other functions. Is that why you were taken off it in the 1st place? What about methotrexate? Has your doctor suggested it as a possibility? Have you looked into the LDN threads?

 

[kpratte]

Came off of it after before the resection surgery and have been playing it by ear so to speak. I didn't have any issues with the imuran other than getting watched closely to make sure I didn't have issues.

The Methotrexate kind of scares me based on that it: "It acts by inhibiting the metabolism of folic acid." I've got enough issues with anemia (iron supplements, and B12 shot once a month) and not the keen on adding a third thing to the puzzle.

I've been favoring the imuran over the other choices as it doesn't appear to be as much of a shock to the immune system. I've got a 3 1/2 year old that brings home all sorts of fun colds and stuff from daycare.

- Ken

 

[Kev]

Yeah, when you get to the stage of deciding between Imuran, Metho or Remicade (or Humira - a close equivalent to Remicade, altho they think its a better choice).. it gets to be a choice between the devil you know Vs the ones you don't. Personally, I am not eager to go Remicade or Humira, (partly due to the cost, but mostly due to their potent potential) plus the whole infusion therapy regimen (like I need another trip to the hospital every month or so)... Which is why I'm praying my GI greenlights LDN. Pre-diagnosis, in the years when I wasn't even aware that I might have some form of IBD, I would routinely get bouts of what I self diagnosed as 'stomach flu', a hazard of having two kids in school that I was raising (or so I thought at the time). In retrospect, it appears that most of those 'flus' were actually my semi dormant IBD
however, school age children and their ills/contacts are just a professional hazard of being a parent. now they are grown and gone... but my girlfriend works in the entertainment field, and deals with thousands of people (over 30,000 last year) and their ills, etc., .. Plus, on top of that, my trips to dr's office, clinics and hospitals isn't exactly the best way to avoid exposure to secondary infections...

 

[Mazen]

Hi Ken

Well I'm currently in the same boat as you. I've had Crohn's for 7 years now with all the ups and downs. I was on maintenance therapy for the alst 2-3 years on Pentasa, and Imuran. Unfortunatly my liver couldn't handle the Imuran dosage that's good for me, so I had to reduce to 50 mg. This wasn't enough, and 2 weeks ago I flared and now I'm back on Prednisone.

My GI is now considering other options like another Immunosuppressive med that starts with a C (I forgot it's name) or Remicade. And like you, the choice is for me....

Well I don't know what to do now, but I think I will try to go on without the above strong meds and see if a diet change with Omega 3 fish oils, Vitmain E and a multivitamin can help (It's from the book "Eating Right for a Bad Gut"). I was thinking of SCD (Specific Carbohydrate Diet), but as I'm already thin, I don't think I can survive without eating starch (potatoes, rice, pasta). So let's see.....

 

[tonya_n_ky]

:welcome: