No remission after 20 months?

I was in a massive flare for nearly five years. When my insurance company finally approved it, I went on Remicade and got into remission. My only other choice at that point was surgery. Colazal, Azathioprine and Entocort combined had me down to 10-15 times a day with bleeding most days, pain and extreme exhaustion. Within a month of starting Remi I was in remission.

If you don't want to try biologicals and all the other meds have been tried, surgery may be a consideration for you. You could at least have a consultation with a colo-rectal surgeon to see what's involved to help with your decision-making process.

i had a sort of similar time, i was sick for 8 years, with pretty much no remission, save for about two months i got with remicade, and the nine months i was pregnant, after the remicade quit it got worse. I had times too when it would be just blood, and so much blood i thought i was bleedign to death sometimes. And i suppose you probably could, slowly. I had 4 hospital stays, and lots of meds, and constant sickness.
So i opted for an ileostomy, and it is great! no sickness, no blood, no meds. I know it's a huge step but like the other two posters said, you can talk to a dr about it. And if you dont want to do it, of course you dont' have to, doesnt hurt to talk to a dr about it though, maybe get some opinions. I have to tell you, that i dont blame you for not wanting to try Remicade. I went to the dr askign for the surgery and he talked me into remicade, and i tried it, even though i didn't really want to, and i wish i hadn't I did get two months "remission" out of it, but i spent that whole time waiting for the UC to come back full force and then when the remicade did start to fail, it was horrible. and it ended up that i just wasted time that i coudl have been better, trying a dangerous drug.
Now alot of people have wonderful success with remicade so it does work for some people, just not for me.
good luck to you in whatever you choose

Hi nice to meet you

I don't often reply to posts but yours seemed a bit like me, I too feel like things have gone on to long only seven months for me. My main symtoms have been urgency and bleeding and wind, I have 15cm proctitis, I am on my first round of prednisolone which has not done a thing and I am also taking 1g pentasa suppositories. My HB is also now very low at 8. I am going back to my GI on tues for a flexi sigmoidoscopy to see whats happening.

I really hope you find some thing that works for you soon I can only imagine you are at your wits end.

Take care

Hey Clicky,

I hope you are able to find some answers and at least some comfort here.  My story seems eerily similar to yours.  I just had my GI appointment yesterday to discuss my few remaining options.  I understand your reservation with Remicade, I too have similar reservations and my GI added to that yesterday by saying that in his opinion since I failed the other imunos (6mp and imuran) that I would probably have problems with Remicade and Humira.  He also pointed out that I would need to be on them the rest of my life (I am 38 so that is a lot of injections).  He pointed out too that if I missed a Remicade injection or we altered the treatment too far that it could cause my system to reject further treatments.  Now that was coming from my GI not the surgeon so take it or leave it but if a GI is willing to pass me off to a surgeon made me think that maybe I should think about it.  With that knowledge I decided that I would have to have a "going to make it to all my injection and pay for it myself if insurance doesn't" mentality for the next 30 plus years if I thought I would live to 70.  Instead I have opted to have a surgical consult.  I go talk to the surgeon this Tuesday.  The options sound promising and my hospital stays have been rough and getting rougher each time (ICU last time).

I would have a consult with the surgeon if I were you.  By agreeing to talk it is in no way a guarantee that you are willing to have the surgery.  You can back out anytime if you don't want to go that route but to have the information about what it would include could be valuable for you to make any decisions.  I have been researching it for a while now and there are still a lot of questions that I have and many things I need to mil over before I make that possible permanent decision.  It is ultimately your decision and you are the only one who has to live with that decision so get as much information about everything as possible.  I have been struggling with this bad for five years so I have researched and researched. I will be comfortable with whatever decisions I make in the future.  Good luck and God Bless.

John

You mentioned that you've tried probiotics...are you still taking them daily? If not, how long did you try them for? It can take a while for things to kick in (including probiotics) and probiotics are pretty essential for IBDers since we tend to have bacterial over-growth issues which in turn exacerbate our symptoms.

Also, which probiotics did you try? There are so many, I've tried a few different kinds but noticed none of them worked the way primadophilus reuteri made by natures way does...it's helped me immensely along with bee propolis, fibre supplements, omegas 3-6-9, vitamin A and vitamin C-calcium ascorbate...this is all that I take (including chamomile tea) daily with no oral RX for my crohns-colitis (cd affecting the colon). I have found great improvements from the above mentioned along with proper healthy diet (no sugar, caffeine, animal fat, fast-foods, processed foods, sugar alcohols which are anything ending in "tol" sorbitol ect) and regular exercise...I know everyone is different and no matter what some do end up needing surgery which I hope is not your case.

Feel better :)