- Joined
- Apr 18, 2012
- Messages
- 6
This is my first post to this forum, though I've read through many things others have posted in the past. I've got a long story of depression here, so stick with me.
I am currently 21 and diagnosed with ankylosing spondylitis and crohns disease. About 4 years ago, my hand locked up. Even to this day I can not close my right hand into a fist, or lay my fingers completely flat on a surface. I was in school for computer engineering, and not being able to properly manipulate my hands to type was a big problem. general practitioner to hand\foot doctor to rheumatologist plus 3 months of about a dozen blood draws lead to "Systemic Lupus". After about a year of intense nsaids and other meds with no help whatsoever (though a little help from physical therapy, which initially made me black out from the pain of stretching my fingers) I called shenanigans on my doctor and switched to a new rheumatologist. He looked at the data from my previous doc, called him a kook, did an xray and said i definitely have ankylosing spondylitis(AS), given that i was suffering intensely from lower back pain and the xray showed common symptoms.
By this time, I have similar problems in toes (intense tendonitis), as well as thickening\hardening skin in various places of my body, sometimes with minor discoloration, and always with total loss of hair in that region. It doesn't affect me that badly, but sometimes I can't find a comfortable position to relax on a couch or watching a movie with my wife, etc, due to the problems. Dermatologist prescribed me a bottle of some 300$ cream that doesnt rub into my skin at all, so if I put it on, anything i bump with that area (hand, elbow, foot, thigh, some areas of my chest and tummy) gets this nasty cream on it. Suffice it to say I used it for about 2 months, saw no improvement, and stopped using it.
New rheumy put me on prednisone to try to get the AS under control. It had a decent effect of reducing my lower back pain (which up until now had prevented me from sleeping some nights). 2 months into pred i got a stomach ulcer. SO much worse than anything I had suffered from until that point. We switched me over to Enbrel after the ordeal and although giving yourself a weekly shot sucks, at least I could sleep and function more or less normally.
About a year ago (last may) I started having blood in my stool. I had suffered from a little blood once or twice with a bm in the past, who hasn't? so I didnt worry much about it. I was getting married later that month, and I had a good internship starting that summer, so when the bleeding didn't stop and some mild pain started to accompany it, I scheduled an appointment with my rheumy, who forwarded me to a colon\rectal specialist.
By about september, I am back in school for my final semester (graduated a semester early), and it is really difficult to schedule appointments. The doctor prescribes me some cortisone cream and tells me I have some anal fissures, maybe fistuals, and he wants to do a colonoscopy. By now I dread every trip to the bathroom, though they are fortunately only once a day (minus the 20 diarhea day I had for the colonoscopy). I bleed every time and I have a massive amount of pain, not while the stool is passing, but immediately after the stool has passed for about 2 minutes or until I get everything cleaned off, whichever is longer. Colonoscopy results in crohns diagnosis, though it was already suspected, and shows some minor inflammation in my TI, and a lot of inflammation in lower rectum\anus. I get sent to the Cleveland Clinic when a variety of steroids and topical creams have no effect, and I begin to have intense, burning pain for 2-4 hours after a bowel movement. Sitz baths, topical creams, vicodin, nothing helps. At this point, the flesh area my anus is so torn up that i'm no logner even sure where my anus is. Everything hurts and there are huge skin tags and at least 2 anal ulcers that have stool passing through them. Cleveland Clinic puts me in surgery the monday following my thursday appointment (mid january now), with an mri on thursday night that reveals no fistulas.
Surgery removes the skin tags and injects me with a high concentration cortisone shot. All my pain up until this point(which already made me wish and pray for death) is made to look like child's play when I have a bowel movement about 6 hours after my surgery. I bleed like crazy and pass clots, but that was all expected. I get two weeks off work for the surgery, and by the end of that, I am feeling pretty good. Bowel movements now hurt during the passing, but within about 30 seconds of that being done there is no pain. I clean up and go about my merry way, thinking I am finally out of the thick of it. The colon rectal doctor speaks with my rheumy and switches me to humira to better treat the crohn's while still treating the AS. During the surgery period, i am off enbrel for about a month, and my back pain comes back for about 2 days before I took the humira shot and it went away within hours of taking that first shot.
half a week after my first humira injection, I develop a staff boil on my leg, another day later there is another on the inner rim of my right nostril. They hurt like hell, I get put on antibiotics, which give me diarhea. Within two days after the boils draining and healing (hurt SO SO bad) I get another one on the back of my leg, thigh area. Another week, that one is gone, two days later, another on the area between my thigh and butt. Doctor switches me from humira to imuran (happens in mid march).
It is now mid april, I have been on biafine cream since the surgery to help everything heal and stay healed, but I am on a steady slope back to where I was at my worst. I am developing more little skin tags, and I am starting to bleed and pass lots of small clots with my stool. That never happened except right after the surgery, so it has me scared. I'm totally tired of life. I can't enjoy anything anymore because I am always in pain. My entire day is defined by when I have my daily bowel movement, and how long the pain lasts afterwards, which is not the excrutiating burning that it was before, but it is more than just discomfort, and I fear it is only a matter of time before I am back to how I was at my worst. It is really hard on my wife to deal with my depression and the breakdowns I have too. But she has been so good to me through it and there is probably no way I can ever repay her for that love.
I haven't seen a gastroneurologist or whatever you call them yet, but my doctor is trying to get me an appointment. I get the feeling I should have been seeing one all along... I feel like nothing in my body works right, and that the doctors just don't understand that I would rather have a colostomy or be euthanized than continue to be in this kind of pain... I feel like my deep devotion to God is the only thing that has prevented me from taking my own life.
Please offer whatever advice you can for dealing with the pain, and what my doctors may have not tried yet...
I am currently 21 and diagnosed with ankylosing spondylitis and crohns disease. About 4 years ago, my hand locked up. Even to this day I can not close my right hand into a fist, or lay my fingers completely flat on a surface. I was in school for computer engineering, and not being able to properly manipulate my hands to type was a big problem. general practitioner to hand\foot doctor to rheumatologist plus 3 months of about a dozen blood draws lead to "Systemic Lupus". After about a year of intense nsaids and other meds with no help whatsoever (though a little help from physical therapy, which initially made me black out from the pain of stretching my fingers) I called shenanigans on my doctor and switched to a new rheumatologist. He looked at the data from my previous doc, called him a kook, did an xray and said i definitely have ankylosing spondylitis(AS), given that i was suffering intensely from lower back pain and the xray showed common symptoms.
By this time, I have similar problems in toes (intense tendonitis), as well as thickening\hardening skin in various places of my body, sometimes with minor discoloration, and always with total loss of hair in that region. It doesn't affect me that badly, but sometimes I can't find a comfortable position to relax on a couch or watching a movie with my wife, etc, due to the problems. Dermatologist prescribed me a bottle of some 300$ cream that doesnt rub into my skin at all, so if I put it on, anything i bump with that area (hand, elbow, foot, thigh, some areas of my chest and tummy) gets this nasty cream on it. Suffice it to say I used it for about 2 months, saw no improvement, and stopped using it.
New rheumy put me on prednisone to try to get the AS under control. It had a decent effect of reducing my lower back pain (which up until now had prevented me from sleeping some nights). 2 months into pred i got a stomach ulcer. SO much worse than anything I had suffered from until that point. We switched me over to Enbrel after the ordeal and although giving yourself a weekly shot sucks, at least I could sleep and function more or less normally.
About a year ago (last may) I started having blood in my stool. I had suffered from a little blood once or twice with a bm in the past, who hasn't? so I didnt worry much about it. I was getting married later that month, and I had a good internship starting that summer, so when the bleeding didn't stop and some mild pain started to accompany it, I scheduled an appointment with my rheumy, who forwarded me to a colon\rectal specialist.
By about september, I am back in school for my final semester (graduated a semester early), and it is really difficult to schedule appointments. The doctor prescribes me some cortisone cream and tells me I have some anal fissures, maybe fistuals, and he wants to do a colonoscopy. By now I dread every trip to the bathroom, though they are fortunately only once a day (minus the 20 diarhea day I had for the colonoscopy). I bleed every time and I have a massive amount of pain, not while the stool is passing, but immediately after the stool has passed for about 2 minutes or until I get everything cleaned off, whichever is longer. Colonoscopy results in crohns diagnosis, though it was already suspected, and shows some minor inflammation in my TI, and a lot of inflammation in lower rectum\anus. I get sent to the Cleveland Clinic when a variety of steroids and topical creams have no effect, and I begin to have intense, burning pain for 2-4 hours after a bowel movement. Sitz baths, topical creams, vicodin, nothing helps. At this point, the flesh area my anus is so torn up that i'm no logner even sure where my anus is. Everything hurts and there are huge skin tags and at least 2 anal ulcers that have stool passing through them. Cleveland Clinic puts me in surgery the monday following my thursday appointment (mid january now), with an mri on thursday night that reveals no fistulas.
Surgery removes the skin tags and injects me with a high concentration cortisone shot. All my pain up until this point(which already made me wish and pray for death) is made to look like child's play when I have a bowel movement about 6 hours after my surgery. I bleed like crazy and pass clots, but that was all expected. I get two weeks off work for the surgery, and by the end of that, I am feeling pretty good. Bowel movements now hurt during the passing, but within about 30 seconds of that being done there is no pain. I clean up and go about my merry way, thinking I am finally out of the thick of it. The colon rectal doctor speaks with my rheumy and switches me to humira to better treat the crohn's while still treating the AS. During the surgery period, i am off enbrel for about a month, and my back pain comes back for about 2 days before I took the humira shot and it went away within hours of taking that first shot.
half a week after my first humira injection, I develop a staff boil on my leg, another day later there is another on the inner rim of my right nostril. They hurt like hell, I get put on antibiotics, which give me diarhea. Within two days after the boils draining and healing (hurt SO SO bad) I get another one on the back of my leg, thigh area. Another week, that one is gone, two days later, another on the area between my thigh and butt. Doctor switches me from humira to imuran (happens in mid march).
It is now mid april, I have been on biafine cream since the surgery to help everything heal and stay healed, but I am on a steady slope back to where I was at my worst. I am developing more little skin tags, and I am starting to bleed and pass lots of small clots with my stool. That never happened except right after the surgery, so it has me scared. I'm totally tired of life. I can't enjoy anything anymore because I am always in pain. My entire day is defined by when I have my daily bowel movement, and how long the pain lasts afterwards, which is not the excrutiating burning that it was before, but it is more than just discomfort, and I fear it is only a matter of time before I am back to how I was at my worst. It is really hard on my wife to deal with my depression and the breakdowns I have too. But she has been so good to me through it and there is probably no way I can ever repay her for that love.
I haven't seen a gastroneurologist or whatever you call them yet, but my doctor is trying to get me an appointment. I get the feeling I should have been seeing one all along... I feel like nothing in my body works right, and that the doctors just don't understand that I would rather have a colostomy or be euthanized than continue to be in this kind of pain... I feel like my deep devotion to God is the only thing that has prevented me from taking my own life.
Please offer whatever advice you can for dealing with the pain, and what my doctors may have not tried yet...
