Need hope and help please

[MamaBearBec]

Hi. Not going to go too indepth unless asked but was diagnosed with severe crohns in July 2014 after I found out I was pregnant. Spent much of the pregnancy in the hospital. Developed anal fistulas so have had many surgeries in the past year. Many medications but am now down to Remicade and 6mp as my major meds. Btw, my baby was born two months early but is relatively healthy, thank God or some higher power.

Ok, so I'm having problems. For one, none of my surgeons seem to listen to me. I'm confused on my treatment plan. One surgeon "accidently" took one of my drainage tubes out and bc of other problems, I found a new surgeon who stil doesn't seem to listen or care much. I'm down to one cutting seton and another that I guess I may have to have another surgery for (it was 5-6 fistulas cut down into one tract- MAJOR scar which still hurts). A few days ago she finally tightened my cutting seton and said it wouldn't hurt but hurts so bad I can't hardly sit or stand and the pain is so intense have a hard time sleeping. Don't even ask about the bathroom. I feel hopeless, like I'm back to square one even though they say I'm getting better. Doesn't feel like it. I'm stil so sick especially since taking imuran and now switched to 6mp. Throw up pretty much all day. And still have diarrheah and intense stomach pain. And she says that bc my pain and disease is just going to get worse I need to suck it up and deal with it. But then also says that I'm not supposed to be in pain. So confused and just don't know what to do anymore. This is so hard to deal with on its own but I also have a ten month old I'm trying to raise. Pretty hard to do when I can't bend over or sit down or walk much.

Am I supposed to be in this much pain? Where do I get the courage to get my surgeon to hear me and help me with my pain? Also, my meds make me so sick but they won't let me stop taking them an I dot even know if they're helping me anyway! I feel hopeless. I don't know what to do. I go to a therapist to help me deal with accepting my disease but it doesn't seem to be helping. I just feel like my disease and my meds and my docs run my life. It's bo longer my life. I can't even do anything I used to like to do as far as hiking or exercising or eating. I'm bummed. I don't know what to do. Sorry if I was rambling. I just need some hope or answers or something - anything. Thanks so much

 

[buttER]

Hi MamaBearBec
I suggest you go to the subforums of this website. There is one for fistulas and there is one for Imuran/Aza/6MP. I hope you can get answers there about your medication.
It doesnt sound right to me that you are so sick.
Good luck!

 

[condor]

My heart goes out to you...my son dealt with access and fistulas and it was very hard seeing him suffer. Have you tried sitz baths? Also, think about doing elemental diet to see if it helps with the stomach pain. There are a few ou there you might be able to get from the pharmacy or your doctors office.

 

[MamaBearBec]

Thank you both for responding. There's so much on this sight, it can be slightly difficult to find the right room to post in but I will go to the forums you suggested. And I'm also sorry to hear about your son, Condor. It's definitely a hard row to hoe. Yes, I do sitz baths and I even use lidocaine, which literally helps for a minute. I'm going to have to call my surgeon. I'm supposed to hae it tightened again in a few weeks.