Second seton

[nomad]

Had a second seton placed today. The fistulae are developing and becoming very complex....

... and I am unable to start Humira because of Hep A + blood tests since September. Pumping two kinds of antibiotics for months now, months of pain and anxiety.

Losing faith and becoming increasingly depressed. I'm single at the moment, have a wonderful circle of friends and a very supportive wider family, but feeling very very lonely throughout.

Sorry for the self-pity... hope to be able to overcome this, but at the moment it all feels so overwhelming.

 

[Keona]

Dont be sorry nomad
I think anyone would feel the same in your shoes and you have every right to feel sorry for yourself. I feel sorry for you - it sounds terrible! I just hope you dont stay in it for too long...

I know for me, when I feel lonely all I want to do is isolate myself... but that is counter productive ..for me. I always feel a bit better reaching out to people and being around people even if I dont want to initially. I am glad you have a great supportive circle.. you have been going through a lot - I hope you reach out to them like you have to us here.
Hang in... we are all here for you
Wendy

 

[nomad]

Thank you so much Wendy. Your words of comfort do help.

I am reaching out in whichever way I can... The problem is often these days I am in such pain it just becomes counter-productive. I used to be a very social person, lively and joyful, and I feel myself losing the ability to go out and have fun. So I end up cocooning, as you described.

Hoping for better days, but afraid this might be my life from now on...

 

[Keona]

I know sometimes it can seem like "forever" but there are a lot of people on here that say they were just as low at one point in their life and they pull out of it. I can relate with you - I use to be very social and a marathon runner and now I cant even walk 2 blocks without being in pain. I have to believe that it will get better though.. there are people on here that keep telling me this and I need to believe them.

I am glad to hear that you are hanging on to hope.. dont lose it.. we all get afraid...and there is nothing wrong with it.
I spend a lot of time on my couch watching tv (I use to hate tv) but sometimes, I think even if I can invite someone over to watch it with me - that would break the isolation .. we need human interaction otherwise we start to live in our heads... it is important for me to get outside of myself...even if it is a distraction..
I also understand that what works for me might not work for others....
Hang in

 

[Jennifer]

You're going through a "rough patch" which means that its temporary. No doctor is going to just let you wither away and die or let you suffer for the rest of your life. There's no reason to with all the procedures out there. I don't know much about fistulas other than what they are and what they can do. As far as how they're treated, that's where I get a little lost. I know how they are found and that the doctors can see the path they are taking. If all else fails, isn't there always the option of a bowel resection or even a stoma depending on how much is being affected (assuming other medications and treatments don't work or if you can't take certain medications)? These two surgeries remove the affected portion which also takes away the pain and gives you your life back (the stoma however changes your life a bit and I'd do extensive research on it and talk to the other forum members on here before you went that route, there is a stoma subforum on here).

 

[nomad]

Thanks all for the encouragement. It's now been a couple days and I'm mentally adjusting to all this. Feeling a bit more confident that life will bring good things, but at times I just feel angry at all this. My perianal area feels like a maze of setons at the moment, I can't even gather the strength to look or feel in detail. Had my first BM today since the op... it was excruciating, messy, painful. Wiping is such a trivial act in daily routines, and suddenly it becomes an epic.

I spent the last few months firmly believing it would all get sorted, the fistula would heal, the seton would get removed... Now I'm beginning to understand the most likely scenario is I will never get my a** back. It will most likely be a permanent focus of pain and embarrassment. I'll have to face this possibility, which is looking more and more likely.

CrabbyRelish, I appreciate the advice on possible scenarios... The stoma scares the hell out of me. Imagining myself without a body part, moreover one that is closely connected with intimacy, and me being single and looking... you get the picture.

One day at a time... Thanks again to all offering comfort and advice, it does bring relief.