Well, this month marks my 10th anniversary since my first flare-up of pan colitis. I remember how scary that was – not knowing what was wrong. It’s hard to believe that it’s now 10 years later and I am about to take my 24th and final dose of methotrexate this week and I have to say that it has really helped my UC. I began back in September by injecting 25 mg of methotrexate subcutaneously once a week. After the first 12 weeks, I had a colonoscopy and it showed healing. The doctor had me change the dose to 15 mg for the next 12 weeks and then stop. I have been feeling good lately (knock on wood). Reduced trips to the bathroom now – only 3-5/day. I think I am either in remission or as close to it as I have been since 2005. I’ve even regained the ability to pass gas without fear of sharting my pants – much to my wife’s chagrin. I am definitely no longer at the point of considering surgery. The question now is what happens once I finish the course of meds. Will I stay this way, or get worse? We’ll have to wait and see. I am definitely glad I tried it. Giving yourself the injections is not difficult at all. The worse part of the whole thing is going to the lab every 2 weeks to get your blood work done. I would recommend this treatment to anyone that is not getting results from other treatments. Current meds: Apriso, methotrexate, remicade, rowasa, cortenema, and lomotil.
UC patient since 2002.
Are you on all of those meds at the present time? Do you get any side effects from them, or can you tell? I have pancolitis as well, and am currently flaring, but it isn’t as bad as it was a few months ago, now.
I haven’t heard of methotrexate, but I’ll look on the internet and read up on it. You inject it yourself? I’d rather that, than go to the hospital of doctor to have it injected, if nothing else than for convenience. Very interesting.
I sure do hope you continue to do, and feel well, after all you’ve been through and all of the drugs you’ve taken. My fingers are crossed for you!!
Nice pic of you…and your daughter?
By the way…isn’t it funny how much us UCers love to be able to pass gas like normal people!!! LOL!!!
My son just passed gas for the first time since May after his 1st Rimacaid. It brought a smile to his face, not matter how stinky.
Why do you have to come off of the mtx? It is a maintenance med and if it’s working, I would stay on it especially if you don’t want to go down the surgery route and have exhausted all other possibilities. I know kids who have been on it for CD for years. Also, why do you need bloodwork done every two weeks still? If all looks okay they can space it out?
I take 25mg. of methotrexate once a week in pill form, 10 little 2.5 mg tablets. I started on this about 9 years ago for arthritis and will probably be on it for the rest of my life. I also have UC and am currently on no other meds for that but I watch what I eat. My last flare after Christmas shook me to the core and did a mental number on me, I couldn’t believe it was so bad. I got better after 2 weeks from taking Entocort. I feel really bad for people who have flares for months on end. I only had one from quitting smoking and it last 6 mo. Other then a few close calls, I didn’t have to go more then about 10 x a day and was able to work. Remicade immediatly cleared that bout up but I started smoking again before I got better and it took a few years to quit again. I’ve beeen smoke free for 2 1/2 years. Azathiaprine cleared up that bout from stopping smoking. Maybe the mtx helps my UC some but it’s not helping my arthritis much. I have blood work done every three months. Yes, that is a nice pic of you and your daughter.
Hi Paul, new to this site. My 24 yr. old son was just diagnosed with pan colitis, just wondering are you on all the meds you listed still besides the methotrexate? He has been hospitilized twice in the last two years since onset with 30 lb weight loss. Doctor is thinking remicade is not working even though he is not in a flareup and is being tested in 3 weeks from last injection to see if he can stay on it and told him to consider surgery. How long have you been on the remicade? Thanks for sharing and so glad I stumbles onto this site.
Cannot believe how many young people suffering from this terrible disease.