Just wanted to update RV fistula situation

Hoping Humira does the trick for you.  I am surprised you have not had more recognizable rectal issues before (sisters of the tags unite!).  I agree on your reason to chose Humira over remi----when I started pondering biologics, that was not an option and I am glad I waited (if I ever go to biologics) as I would rather not lose most of my days in an infusion clinic.

On an up side...every one of my friends that have had an ostomy for CD/UC have loved having it done...so if the biologics don't work I hope you don't fear that as an option.

Take Care

Thanks Habs, I'm surprised too, I thought for sure with having the perianal crohn's skin tags and CD affecting my colon/rectum that I would have had fistula issues way sooner in the ball game, sadly I figured that if I didn't have one yet I'd get away with never having one, but of course, it finally happened. I really don't see myself willingly opting for an ostomy if the biologics don't work, I have some real mental issues when I even think about that surgery. Time will tell I suppose, just keeping my fingers crossed that the Humira will work.

You're so right, who likes to get scoped! I just recently had a scope, my first one since I've developed fistulas, and it really hurt my fistulas, but mine are anal, so I'm really hoping you didn't have to deal with that with your RV.

I pray the biologics work for you so you don't have to have surgery, since you're not mentally OK with having an ostomy. I know some people seem to be OK with it, or maybe the state they're in before the surgery is so bad that they are willing to do anything to feel better which makes it easier to make that decision, which I can understand. I worry about the possibility of my having to get an ostomy eventually if I can't get my disease under control. My dad had one since he was 19 (he had UC), and with his personality it caused him a lot of grief, but I think it has a lot to do with your personality and your outlook on life, just like anything else. Keep us posted, hopefully they will get you better and into remission.

So sorry to hear about your crying during your scope. My scope didn't bother me since I was under, but doing the prep made things pass through my fistulas which was very painful. Thankfully I seem to have mostly recovered.

Honestly, I'm not doing anything specifically for my fistulas. I was originally on Remicade and tried Humira and although Remicade got me out of my initial presentation of Crohn's, it lost it's efficacy quickly for me, but please don't take that as it won't work for you (or Humira). It helped me right away, like within a day, so that was good. Both of the biologics kept my arthralgia away though, they just didn't seem to do anything for my bowel disease.

At least now they aren't really draining, so mostly they don't bother me, they just gross me out and I hope one day they heal. They're more just a nuisance, but they aren't abscessing, so I guess I've come to terms to just living with extra butt holes. :O

As far as the mental attitude, I've only had this disease for almost 5 years, so the majority of my life I was healthy. I'm sure it's mentally draining living with this for a long time. I didn't think I'd ever get into a lasting remission, but I had almost 2 years, and it was AWESOME! It probably helped that I was a new mom, so I din't even really think about Crohn's much, I was just focused on my daughter. For me, I was just so thankful to feel normal and good, and I felt like I did before Crohn's, hence why I didn't visit the board, I just lived my life and didn't even think about Crohn's really. I was foolish to think I wouldn't have to deal with this again, but that period of remission was such a blessing. I hope that you can get to remission, and it may be harder for you mentally since you've dealt with this for longer, but for me, being in remission made it so much easier for me to be positive and mentally healthy.

Honestly, this disease is horrible to deal with and the thought of surgery scares me too, but I think the thing that scares me the most is becoming bitter from the worry and stress I let it cause me. Best of luck to you, you deserve remission and to know what it feels like to feel normal!

Thanks Octobergirl, you're right, we all deal differently for sure...I'm glad you were able to find remission and were able to enjoy your daughter (congratulations!!) and I feel bad that you are still dealing with your fistula issues...guess the bottom line is our bodies in general are very complex, throw a disease into the mix (like IBD) and fasten your seatbelt cuz it's sure to be a bumpy ride through life. Best of luck with everything and I hope those fistulas heal up and stay away.

Hi pmedic, yup we're definitely in the same boat eh! I haven't tried Cimzia and my GI hasn't mentioned it to me, he just said biologics or ostomy if those don't work...keeping fingers crossed Humira works. Sorry you've been dealing with c-diff, like we don't have enough to deal with...I'm hoping I won't be dealing with c-diff issues as well because I think that would put me over the edge...don't know how you find the strength to deal with all that, you're very strong for sure.

You are strong pmedic, everyone here is strong...I'm here cuz I don't know where else to go lol, I hear ya on the crying thing, I'm amazed I'm not dehydrated from all the crying I do on a fairly regular basis (for yrs now) waiting to see the light at the end of the tunnel, will let you know if it happens some day :)

PB, I hope the Humira does the trick for you and puts you into remission. It seems we're both going down the same road right now with the whole RV fistual thing. I had an MRI yesterday and now have to wait on the results, but it's pretty obvious that there is a fistula. My only choice for biologics would be Humira since I had antibodies to the Remi. My GI mentioned a seton drain but again I have to wait to hear from his nurse.

Sending good vibes your way. Hang in there.