remission and Avice

BigRedd · Jul 8, 2016

Hey!
I've been diagnosed with crohn's for 2 years now. I am on both Azathioprine and Remicade.
Unfortunately, these meds do not fully control my disease. I still regularly have diarrhea (sometimes 2 to 3 times a day, but somedays all is solid and dandy) cramps and urgencies of BMs.

My doctor has told me that as long as I am not having more than 6 BM's a day (and no blood is present in the stool), there's nothing much more he can do for me (exept surgery, which he thinks is not worth it if i'm having less than 6 BMs a day)

Does anyone else have experience with this situation?
I see alot of people talk about remission; Are there really people out there with this disease who are completely symptomless?

Thanks

ronroush7 · Jul 8, 2016

I have been told I am in remission by a specialist but I still have bad days.

Lucky One · Jul 8, 2016

Unfortunately this disease has no 'normal'. We are all different in the ways we achieve remission. 2-3 times a day isnt bad compared to a really active and painful flare, so that may be your new normal. Im considered to be in remission for the last 2 years, but still have many bad days. I've learned to live with and manage those days as part of my 'normal'. Best of luck to you....

FrozenGirl · Jul 8, 2016

Where are you located? (Might make advice more location helpful)

Have you tried symptom specific meds like lomatil or immodium for diarrhea and maybe an antispasmodic for cramps etc. That might help.

Justanothercp · Jul 9, 2016

BigRedd,
My story sounds very similar. I'm on budesonide, remicade and Lialda just to control symptoms, I usually have 2-3 soft movements a day (sometimes more/sometimes less). I've expressed concern over the long term use of these Meds and lack of "remission", but my MD says this is as good as it gets, and recommends I hold on to as much bowel as I can for as long as I can... I've already had one resection.
I've come to grips with it and have accepted this as my new normal and am honestly thankful things aren't worse.

irishgal · Jul 11, 2016

Have any of you considered AMAT (Atypical Mycobacteria Antibiotic Therapy)? I was also told I was in remission through my more than two decades with CD, but I never really gained weight, I still had diarrhea and felt like I had no energy even when at my best. My lab reports would be pretty good and the doc would ignore me since I wasn't in crisis. I learned to just deal with it. But then I got REALLY bad and it was like the CD was unstoppable no matter what I did, so when I was out of conventional treatments, I took flyer on AMAT as a last resort. Figured I had nothing to lose!

I was in remission better than I had ever had in my life in 6 weeks. Mucosal healing in 4 months. Now, after 19 months it's like I've never had CD. Completly healed with no symptoms. Maybe this would help some of you as well? Just mad the docs don't tell people about this. It's like an underground network of patients helping other patients, even though there's a stage 3 FDA trial almost completed in the US now and the individual meds are available as generics. The site in my signature has all the info and research studies. Hope you all find some type of full healing with something! It's unfair that CD patients have to settle for "good enough."

shamrock15 · Jul 11, 2016

How long have you been on remicade and aza? It does take some time for it to get to full effect, especially if you were really active before. Remicade took care of about 80% of my symptoms, then aza was added about 8 months later. It was another 3-4 months before I went into remission. I still have some days that aren't great, but overall I am in very good shape now. Your doc can also change the dosage and frequency of the remicade. Mine went from 4 vials to 7 and from an 8 week frequency to 6. Best of luck!

irishgal · Jul 11, 2016

Hi Shamrock - glad you found a treatment that works for you! As for my case, I was off and on azulfadine in my teens a few times 25 years ago. It never did a thing. They said it would only work twice at the most since my body would get used to it and it wouldn't work as well. Then I had 25 years of other treatments, finally ending in Remicade for about 8 months. It worked beautifully at the beginning, but never kicked me into full remission, but I still felt not too bad. But then it would wear off quicker and quicker each time and by the end I only got 4 out of 8 weeks of relief, then was sicker than I had ever been for those last 4 weeks. Also, I had a constant head cold for the whole time I was on Remicade. I was limping to my next dose regardless (knowing it wasn't working but thinking I'd buy myself a few more weeks to figure out a plan), when my doc called me up the night before the infusion and told me the blood work came back and I had built strong antibodies and that upping the dose wouldn't help since I had no detectable level of the med in my body. (Also, the insurance wouldn't pay due to this.) She said she didn't think other biologics would do much good either since I had failed two already and that we had to have a talk about what to do. This told me she was out of ideas but when I researched and brought her AMAT, she wouldn't even consider it even though she had no other plans. I found another doc, and got myself better.

I know AMAT doesn't work for all, but it works for some, and it will probably be an approved treatment pathway in a year or two anyway due to the RedHill trial. I just couldn't wait that long so I found a work around. Still, really glad you found something that worked! Anything patients can do to buy themselves time and quality of life is good.

ronroush7 · Jul 11, 2016

irishgal said:
Hi Shamrock - glad you found a treatment that works for you! As for my case, I was off and on azulfadine in my teens a few times 25 years ago. It never did a thing. They said it would only work twice at the most since my body would get used to it and it wouldn't work as well. Then I had 25 years of other treatments, finally ending in Remicade for about 8 months. It worked beautifully at the beginning, but never kicked me into full remission, but I still felt not too bad. But then it would wear off quicker and quicker each time and by the end I only got 4 out of 8 weeks of relief, then was sicker than I had ever been for those last 4 weeks. Also, I had a constant head cold for the whole time I was on Remicade. I was limping to my next dose regardless (knowing it wasn't working but thinking I'd buy myself a few more weeks to figure out a plan), when my doc called me up the night before the infusion and told me the blood work came back and I had built strong antibodies and that upping the dose wouldn't help since I had no detectable level of the med in my body. (Also, the insurance wouldn't pay due to this.) She said she didn't think other biologics would do much good either since I had failed two already and that we had to have a talk about what to do. This told me she was out of ideas but when I researched and brought her AMAT, she wouldn't even consider it even though she had no other plans. I found another doc, and got myself better.

I know AMAT doesn't work for all, but it works for some, and it will probably be an approved treatment pathway in a year or two anyway due to the RedHill trial. I just couldn't wait that long so I found a work around. Still, really glad you found something that worked! Anything patients can do to buy themselves time and quality of life is good.

Glad you got yourself better.