Venting a little

I apologize in advance if this isn't the place to post this sort of thing... I'm just not sure what else to do at this point.
I've basically been flaring for about a year. It started at some point during my pregnancy, but I thought it was hemorhoids (I was in denial too, but please dont judge me). After my son was born in October I restarted my Remicade infusions plus steriods, but its becoming more and more apparent that they just arent working. I was hospitalized for the 4th time in 3yrs in Dec and given IV steriods and antibiotics. I had Remicade 3 weeks ago with ZERO effect on my Colitis OR Still's disease (Rare form of RA). I am currently on 50mgs of Prenisone... plus bentyl, lomotil, phenergan, and hydrocodone (anything I can get to slow the GO) and am still running to the bathroom dozens of times a day. Often its nothing but blood. My GI has reffered me to a specialist in Atlanta to discuss experimental treatment, but if I don't qualify for any, we will be looking at surgery.

I guess I just want to know that I'm alone. That there are other young mommies out there struggling to take care of their babies and themselves.

I want to know your experience with drug trials and surgery. Can I expect to ever feel normal? Will I be in Depends for the rest of my adult life?

I'm sorry, I'm just so discouraged and overwhelmed.

I have, nothing has shown up abnormal with it thus far. I'm getting the paperwork ready to be checked for Remicade antibodies. Apparently where I am that is a very specialized test and they have to come to me, rather than me go to lab to have it done? Has anyone else had this experiencec?

I got mild relief after the hospital and did taper off the pred from mid march until may, but things have never truly gone into remission. I kept thinking, "Ok, it's just taking some time, by the next infusion, I'll be good as new." but it's just not happening for me :/

vent away!
I have two young kids and because of the UC I feel like the worst mother in the world!

People take for granted the simple things like taking you kids to the park!

Hope you feel better soon

Do you use rectal retention enemas (Rowasa or generic, steroid enemas)?
Believe me no one here is judgmental at all. We find no fault with anything except UC happening to us when we were innocent. There is no blame.

I am someone who had no benefit from oral meds for 10 years but the enemas really helped. I also had a long discovery period on what diet mods helped me but that is such a difficult thing (even without young kids) I'm not gonna say "try that" but will say "Try rectal retention enemas for 30 days" and see if it helps.

You definitely won't end up in depends for the rest of your life if you opt for surgery. In fact, some people opt for a perm ileo and they don't even worry about pooping out of their butts anymore. That is pretty much a sure fire way to avoid depends. Of course, with any procedure there is a learning curve and there are options. J-pouch is another option which can give your your normal process back but it's a pouch made out of your small intestine so it can't hold as much stool as your colon but it can still give you your life back. You also have lots of medical options but it really depends how much trial and error you want to go through with. Some people hit a point where they want to be done with UC forever, some peope don't mind trying something and waiting 6 months to see. With a baby, either choice is tough. I know you want to give an infant all of your time and energy and with a chronic illness, it is difficult. :(

j-pouches have their own issues but generally, it's a lot better than having active UC, especially in the case where your UC is difficult to treat. People with pouches empty about 6x a day, sometimes more, sometimes less. Many don't sleep through the night and some alter their diet to keep things in good condition. Not everyone is like this, we have a few members who eat normally, but i feel like i see more people altering diet and lifestyle slightly after than not - regardless, they usually have no regrets. Canasa shouldn't fall out. I usually push mine in and then i feel it move up into the rectum. After that, it's in and i don't feel anything. I've never had one come out. Perhaps you should try cortifoam, that is a foam so it dissolves.

The Canasa only comes back out if you haven't pushed it up high enough. I would try it again. :)

coming from experience when flare ups are bad and there are too many BMs they dont like giving rectal drugs as you just poop them out and they cant keep track of how much you are getting
if you stopped remicade during pregnancy it could be you developed antibodies
taking imuran with humira might help
im sorry that you are going through this at a time when you just want to feel healthy and good

You may have a bad case of c diff which can cause something called c. Diff colitis and have similar symptoms to UC
Also are you still taking hydrocodone because narcotics will make c. Diff worse it can cause mega colon ( they slow down GI tract so it traps toxins inside causing more bacteria to be producing more bacteria which makes for a more rampant infection)
Unfortunately the only pain meds that are ok to take at this point are tramadol and Tylenol
If you are in too much pain with those two you can take Ativan as it will reduce some pain induced anxiety
Alternating hot and cold packs on your abdomen helps as well

When I was initially hospitalized they were giving me narcotics and I was found to have c. Diff colitis they didn't know why I was getting worse on antibiotics and eventually my sister (nurse) said they are doing the wrong treatment so I was transferred to a different hospital where they found that my c diff got so bad because of the narcotics and I was rapidly developing a mega colon
Thank G-d they were able to reverse the affects and I responded to c. Diff treatment

I'm glad that you finally found out the problem and hope that you recover as quickly as possible. I would like to say this -- I think that you need to push your doctor for the rectal meds. I used Canasa suppositories for a long time, then they stopped working. I was then switched to the mesalamine enema and it has really worked well. I also take an oral so I'm treating from both directions since my colitis is through my entire colon. I actually like using the enema better than the suppository (as much as any of us can "like" doing any of this!). I use it when I go to bed at night and lay on my left side for as long as I can. Once you get used to it, it's not so bad at all. I am usually able to keep it in all night with no problem. Sometimes, that's not the case, but most of the time I can. I just think that the enemas are a really good option to try.