Very very frustrated. *UPDATE*

I swear every time I think something is going to go right, it doesn't. So I went to see my doctor on Thursday. Well I saw his Nurse practitioner. He doesn't have any appointments available until at least 2012. We talked about Humira and I got the blood tests for it which both came out negative. So I'm was excited to be starting Humira. So just a few minutes ago, she called me. She told me that my doctor doesn't want me on Humira because I "didn't respond" to remicade. When in reality, it gave me years of remission. It just lost its effectiveness. He thinks that Humira won't work as well. He wants me back on 6MP. 6MP never did anything for me. It gave me lymph nodes and that's it.

I told her, I'm not going to do 6MP because I don't have the luxury of waiting for it to work. I'm at school, I live alone and have a dog. Right now I can barely walk because of my fistula. 6MP most of the time doesn't even heal fistulas. I also told her that I'm going to find another doctor if I don't get it my way. I know I may be being stubborn, but I can't take it anymore. I'm in severe pain. I heard that if you did orignally respond to Remicade then most likely you will respond to Humira as well. I just don't know anymore. I'm stressing right now.

You have to do what you feel is best for you. Find another Dr. who will help you. I went thru many until I found one I trusted and pointed me in the right direction.

Thanks for all your support guys, I really appreciate it. The sad thing is he's a Dr. at the Cleveland Clinic and supposed to be one of the best there. It's really frustrating because I'm far away from home, from my family and friends. I mean I have friends here at school but it's not the same as my life long friends you know. He was supposed to call me back today according to the NP, but he didn't.

I live in NJ 50 minutes away from NYC. However, I'm currently at school in Ohio so I wouldn't be able to see him. Thank you though : )

I see. I had an amazing few years with Remicade though. They're different proteins as well. I just built up antibodies to the other protein from remicade. I didn't say I liked him, I just said he is supposed to be one of the best. I'm so sick of my darn fistula. I can't take it anymore. I already had to skip a few classes and it's only the third week. I hate skipping class. It makes me feel like worthless. I know I have an excuse, but still it takes a toll on my GPA. I want to go to law school eventually and get into the political field. This disease isn't making it much easier. Guess I just should take my own advice and stay positive.

Have you ever met with a surgeon to find out if you can get the fistula surgically repaired? Like I said, the biologics are definitely not a quick fix for a fistula. You must've read this info over on the Crohns board, no? Lots of people over there have fistulas, & some do ok w/meds, most don't. If that's your biggest problem currently, treat that ASAP, not your UC, know what I mean? If you have a PCP at school, you could always call them & explain what the problem is, ask for any recommendations, for either a GI or a colo-rectal surgeon (just to treat the fistula.)

I have a seton stitch in there and it doesn't work well enough. What else could I possibly do about the fistula. My surgeon ruled out a cutting seton so essentially this is my own option. I thought the seton would have helped a lot, but in reality it isn't. Everything is bothering me right now. It's not just one problem. I don't know what the heck to do anymore. I'm about to just shove a cork in my butt and call it cured.

bananagirl said...
bosnianboy, i know how you feel!! my doctor is supposed to be the best g.i. in my town and his bedside manner SUCKS! he doesn't answer my questions and he always wants to run tests on me that i just had. it drives me nuts. luckily, i talked to my nurse at the infusion center and she said i could switch to another g.i. in the practice. there's a really nice doctor in the office so i'm definitely making my next apt. with her.

i wish i knew more about fistulas but i've never had one. my hems were really painful though and it hurt to sit down. i'd always have to awkwardly lean to one side or just lay down.

It sucks! I've been trying to call him with no return yet. I hate going to class now because it hurts to sit on the hard seats they have. I hate skipping class more than anything, but I can't because of the pain. Fistulas are probably the most annoying thing that can happen to the bum. Well hems are pretty bad too. they both suck and I might have both at this point. I've been in this flare up for 2 1/2 years now. I don't know how I keep my weight up. I'm really down right now. I live alone, have a dog, I'm in the student government. It's just so much to handle right now.

Remicade is often the "go to" med to aid with fistulas....I've often heard it can help heal the fistula much quicker....you really need to find a better GI....good luck and feel better soon!

My fistula doesn't hurt, but maybe that's because the CR surgeon thinks it and the abscess that caused it, has nothing to do with my UC. It was just one of those "bad luck" things that happens. It really sounds like yours isn not draining properly and is abscessing, and therefore causing pain.

I know there are a ton of other treatment options for fistulas than cutting setons and remicade! Has your surgeon said if he thinks your fistulas are related to your IBD or not? That does change the options, I do know. It seems like he'd at least be open to trying a fistula plug or something.

Only fistulas that are due to IBD will respond to remicade, too, so that's not an option for treating mine.

And Eva, yeah, setons are supposed to keep it open and allow it to drain. Unless it's a cutting seton, which is sort of like a slow-motion fistulotomy. It slowly cuts through from the fistula tract to the skin, so that the sphincter muscle is divided slowly. The idea that is if the muscle is cut a little bit at a time, there's less risk of incontinence.

notsosicklygirl said...
I have not had a fistula thankfully but I had 2 fissures at the same time and that was awful. I hope you never experience a fissure. It doesn't only feel like pooing razors, it hurts for 10+ minutes after a BM, it stings and burns. It's really painful.

I agree that Humira is worth a try. It's frustrating when you want to try something and the GI won't listen to you. You obviously have been through a lot with this illness and your opinion and desires should be taken seriously. I felt that way when my GI told me NO LDN. Afterwards, I ended up improving for no reason at all and now I am in remission. The mysteries of UC.

You know what, I had the same thing I think. Like last week, my first bowel movement of the day hurt so bad right after I went. It was such a bad pain. I remember telling my mom " I think this is what it would feel like if I went to prison" Seriously that was horrible!! I couldn't walk from the pain for about 5-10 minutes.

Awesome news!

It does sound like you could be dealing with a fissure. THe most annoying part for me is that it comes and goes. Just when you think you're in the clear you feel some pain, see blood and it's torn again. I hope you don't have one. I wouldn't wish it on anyone.