I started to write my full story here, but it got waaay too long! I think it's best if I just give the essentials for this first post.
I have Crohn's, but for several years the doctors thought I had some other kind of skin-related auto-immune disease. It started in 2010 with what they thought was an anal abscess but turned out to be several fistulas. When minor surgeries didn't work, I had a colostomy (supposed to be temporary) prior to fistula repair surgery. A few months after that, I got more fistulas in the same area, so the colostomy stayed.
I'll skip over most of the details from 2010 to 2014 and tell you what's going on now.
I had a total colectomy in 2013, so I now I have an ileostomy and fewer Crohn's symptoms. Every two or three months I get cramps and go on liquids for a few days. I can deal with that -- much better than what I was going through before! My main complaints now are permanent muscle weakness (high-dose steroid side effect) and pain from a perineal wound that was reopened a year ago. It's always uncomfortable and sometimes very painful. Sitting makes it worse, and my main job (40+ hours a week) requires sitting. I also teach (adjunct, very part time).
I've had several surgeries in the past 5 years and none have healed quite right (incisions appear to heal, then separate or develop tunnels). Happily, I'm down to just the one unhealed wound now, but it's inconvenient because it keeps me from socializing as much as I used to. I need to spend my "sitting currency" on work rather than having dinner with friends or going to chorus rehearsals. The muscle weakness makes me tired all the time, too, so I tend to go to bed early and spend my weekends in a recliner regaining strength. I'm hoping some of the tiredness is from pain, and if the next surgery takes care of that, I might regain some energy. I get on well with my three siblings and none of them mind hearing the gory details. We are very spread out geographically, so we Skype about once a month.
Over the summer I sold my lovely top-floor condo in Dorchester MA (up three steep flights of stairs) and now rent a small ground-floor apartment 20 miles west of the city and my job. (Like many people here, finances got a little scary because of reduced salary and high medical bills.) I joined the UU church in my new neighborhood, but it's been slow getting to know people.
My next surgery will be an advancement flap to fill in and cover the perineal wound, but with my history it might take a while to heal so I am putting it off until June 2015. I nearly lost my job in 2013 because of surgery-related absences, so I need to build up some credibility (and PTO days). I also want to wait until the spring semester is over since I at least want to hang onto THAT job in case I lose the full-time one.
So that's the short version (put still plenty long!). I have read threads on this site from time to time over the past 5 years and always found it helpful to hear from others having similar issues. I am 53 and like living alone, but sometimes dealing with all this unmentionable health stuff can get kind of lonely. If all goes well with the flap surgery, I will finally be able to get back to singing and seeing friends more. Until then, I will rely on this discussion board for extra support.
Thanks for listening!
I have Crohn's, but for several years the doctors thought I had some other kind of skin-related auto-immune disease. It started in 2010 with what they thought was an anal abscess but turned out to be several fistulas. When minor surgeries didn't work, I had a colostomy (supposed to be temporary) prior to fistula repair surgery. A few months after that, I got more fistulas in the same area, so the colostomy stayed.
I'll skip over most of the details from 2010 to 2014 and tell you what's going on now.
I had a total colectomy in 2013, so I now I have an ileostomy and fewer Crohn's symptoms. Every two or three months I get cramps and go on liquids for a few days. I can deal with that -- much better than what I was going through before! My main complaints now are permanent muscle weakness (high-dose steroid side effect) and pain from a perineal wound that was reopened a year ago. It's always uncomfortable and sometimes very painful. Sitting makes it worse, and my main job (40+ hours a week) requires sitting. I also teach (adjunct, very part time).
I've had several surgeries in the past 5 years and none have healed quite right (incisions appear to heal, then separate or develop tunnels). Happily, I'm down to just the one unhealed wound now, but it's inconvenient because it keeps me from socializing as much as I used to. I need to spend my "sitting currency" on work rather than having dinner with friends or going to chorus rehearsals. The muscle weakness makes me tired all the time, too, so I tend to go to bed early and spend my weekends in a recliner regaining strength. I'm hoping some of the tiredness is from pain, and if the next surgery takes care of that, I might regain some energy. I get on well with my three siblings and none of them mind hearing the gory details. We are very spread out geographically, so we Skype about once a month.
Over the summer I sold my lovely top-floor condo in Dorchester MA (up three steep flights of stairs) and now rent a small ground-floor apartment 20 miles west of the city and my job. (Like many people here, finances got a little scary because of reduced salary and high medical bills.) I joined the UU church in my new neighborhood, but it's been slow getting to know people.
My next surgery will be an advancement flap to fill in and cover the perineal wound, but with my history it might take a while to heal so I am putting it off until June 2015. I nearly lost my job in 2013 because of surgery-related absences, so I need to build up some credibility (and PTO days). I also want to wait until the spring semester is over since I at least want to hang onto THAT job in case I lose the full-time one.
So that's the short version (put still plenty long!). I have read threads on this site from time to time over the past 5 years and always found it helpful to hear from others having similar issues. I am 53 and like living alone, but sometimes dealing with all this unmentionable health stuff can get kind of lonely. If all goes well with the flap surgery, I will finally be able to get back to singing and seeing friends more. Until then, I will rely on this discussion board for extra support.
Thanks for listening!
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