This is going to be difficult for me to write down... but at this point I know that I need to. Please bear with me, as this may be long, poorly written, and my dates are going to be a little fuzzy.
So in the late Fall of 2001 I was out at the movies with friends when I suddenly started experiencing pain, which was followed by weakness, then involuntary shaking, fever/chills and near loss of consciousnesses. At some point after being admitted to the emergency room I was rushed into surgery, only to awakened very early in the morning by the head of the hospitals gastrointestinal surgeon and told the following:
1. that I had Crohn's disease
2. it had led to a "horse shoe" shaped abscess that was surrounding my rectum, the worse abscess he had ever encountered
3. there were multiple fistulas leading from the abscess to the surface of perianal area
4. the emergency room surgeon, or the surgeon on call or whomever had performed the original operation had done several things wrong and he needed me to go back in for surgery to correct the placement, types of drains, seton that was used.
This is the beginning of my story with Crohn's disease, what followed was an additional twelve surgeries in the first year of my diagnosis. All of them perianal surgeries with the goal of saving my rectum, avoiding re-sectioning, draining the abscess, and trying to seal the fistulas.
In this first year I was on a multitude of medications, I could dig out my medical records and figure out exactly what and how much if anyone is interested. I do remember a moment when after several months I sat down and counted all of the individual pills I was supposed to take on a daily basis, thirty-four not counting pain medication. Oh well, I'm a good patient and I do what I'm told. After all the whole reason I'm sticking this out is because I know things could get better.
After I think one year with minimal progress we get the infection and abscess to a "manageable phase", however things are stalled and I am not going into recovery. Overall my Crohn's, the abscess, and fistuals do not appear to responding to any of the meds I've been on. So acting on my doctor's orders, I undergo an ileostomy procedure to hopefully help things along and give the 'ol poop chute a better fighting chance. In all honesty, the ostomy was for whatever reason the most emotionally painful event in my life that I can consciously recall. Anyway it helps, between the ileostomy and an uptick in meds things slowly start to look better.
Around this point my gastro doctor begins to notice a concerning uptick in my liver enzyme levels. Medications are changed, more lab work is done, nothing changes. Then I have an ultrasound, the tech actually said "Uh oh" out loud. So I kind of assume that thing's might not be all peachy keen, hope for the best but prepare for the worst. Next there's a liver biopsy, everything comes back saying that I have severe advanced case of PSC (primary sclerosing cholangitis). I am given three to five years to live.
The perianal surgeries during this stage are more fruitful, however I am fully not healing. Thankfully I reach a stage where Remicade, dubbed my "silver bullet treatment" by my gastro doctor, becomes an viable option. Roughly midway through the induction doses I start to show improvement. Then as if someone flipped a switch I go from very ill to on the mend, after eighteen months with the ileostomy I am in remission so we do a ileostomy reversal. I've gone from thirty pounds underweight to eighty pounds overweight (prednisone and an ostomy that lets me eat seemingly whatever I want for the first time in years is a bad combo).
I am ruled medically incapacitated, which is a huge gift as my healthcare up to this point was dependent on my being a full-time student. I stop going to school, I leave my job, and settle into my chosen goal of spending time with my family and friends in what I understand is likely to be my last years on Earth.
Jump forward a year or two, and my gastro doc has moved and his replacement is pretty bad. So I decide to see a specialist for a second opinion on my treatment, we go through the same procedures: bloodwork, imaging, and biopsy. However the result is different he says that he can't find the PSC, or any signs of it. Six months previously I had been diagnosed with Celiac disease. Which if you have, and are ingesting apparently will mess up your liver levels and cause a bunch of problems. So instead of having a terminal liver diagnosis I can't eat bread. This was a bit of a kick in the head.
So another jump forward, I'm getting my life together, I've returned to work. However about a year ago my CT scan and small bowel series shows some active inflammation at my terminal ileum. Never had a problem there before, so we up my Remicade dosing and after six months or more another round of imaging shows some improvement.
Now I am coming up on I think a year and a half of being on a double dose of Remicade every six weeks. After my last infusion two weeks ago I started experiencing some odd side effects. First of all I started developing psoriasis around my bellybutton and inner thighs. A lymph node on the left side of my neck swelled up to roughly the size of a golf ball, and my knees began to experience really severe joint pain.
My doctor believes the joint pain may be a sign that I am developing anti-bodies to the Remicade, a prospect that seriously frightens me. She also thinks that the other symptoms are a sign that my current Remicade dose is too high and needs to be lowered.
So now I am simply waiting, waiting to see what happens. I have to admit that I am really scared, I think for the first time this disease has made me afraid. It feels as though my health is failing and my body and life are falling apart in slow motion. For whatever reason, these comparatively minor symptoms have shaken me in a way that nothing has before. Perhaps I'm simply frightened of experiencing another bout of illness? I don't know. I do know that as of right now, I don't feel as though I can confess or share my fears and anxiety with any of the people in my normal support network. So, yeah... that's my story.
So in the late Fall of 2001 I was out at the movies with friends when I suddenly started experiencing pain, which was followed by weakness, then involuntary shaking, fever/chills and near loss of consciousnesses. At some point after being admitted to the emergency room I was rushed into surgery, only to awakened very early in the morning by the head of the hospitals gastrointestinal surgeon and told the following:
1. that I had Crohn's disease
2. it had led to a "horse shoe" shaped abscess that was surrounding my rectum, the worse abscess he had ever encountered
3. there were multiple fistulas leading from the abscess to the surface of perianal area
4. the emergency room surgeon, or the surgeon on call or whomever had performed the original operation had done several things wrong and he needed me to go back in for surgery to correct the placement, types of drains, seton that was used.
This is the beginning of my story with Crohn's disease, what followed was an additional twelve surgeries in the first year of my diagnosis. All of them perianal surgeries with the goal of saving my rectum, avoiding re-sectioning, draining the abscess, and trying to seal the fistulas.
In this first year I was on a multitude of medications, I could dig out my medical records and figure out exactly what and how much if anyone is interested. I do remember a moment when after several months I sat down and counted all of the individual pills I was supposed to take on a daily basis, thirty-four not counting pain medication. Oh well, I'm a good patient and I do what I'm told. After all the whole reason I'm sticking this out is because I know things could get better.
After I think one year with minimal progress we get the infection and abscess to a "manageable phase", however things are stalled and I am not going into recovery. Overall my Crohn's, the abscess, and fistuals do not appear to responding to any of the meds I've been on. So acting on my doctor's orders, I undergo an ileostomy procedure to hopefully help things along and give the 'ol poop chute a better fighting chance. In all honesty, the ostomy was for whatever reason the most emotionally painful event in my life that I can consciously recall. Anyway it helps, between the ileostomy and an uptick in meds things slowly start to look better.
Around this point my gastro doctor begins to notice a concerning uptick in my liver enzyme levels. Medications are changed, more lab work is done, nothing changes. Then I have an ultrasound, the tech actually said "Uh oh" out loud. So I kind of assume that thing's might not be all peachy keen, hope for the best but prepare for the worst. Next there's a liver biopsy, everything comes back saying that I have severe advanced case of PSC (primary sclerosing cholangitis). I am given three to five years to live.
The perianal surgeries during this stage are more fruitful, however I am fully not healing. Thankfully I reach a stage where Remicade, dubbed my "silver bullet treatment" by my gastro doctor, becomes an viable option. Roughly midway through the induction doses I start to show improvement. Then as if someone flipped a switch I go from very ill to on the mend, after eighteen months with the ileostomy I am in remission so we do a ileostomy reversal. I've gone from thirty pounds underweight to eighty pounds overweight (prednisone and an ostomy that lets me eat seemingly whatever I want for the first time in years is a bad combo).
I am ruled medically incapacitated, which is a huge gift as my healthcare up to this point was dependent on my being a full-time student. I stop going to school, I leave my job, and settle into my chosen goal of spending time with my family and friends in what I understand is likely to be my last years on Earth.
Jump forward a year or two, and my gastro doc has moved and his replacement is pretty bad. So I decide to see a specialist for a second opinion on my treatment, we go through the same procedures: bloodwork, imaging, and biopsy. However the result is different he says that he can't find the PSC, or any signs of it. Six months previously I had been diagnosed with Celiac disease. Which if you have, and are ingesting apparently will mess up your liver levels and cause a bunch of problems. So instead of having a terminal liver diagnosis I can't eat bread. This was a bit of a kick in the head.
So another jump forward, I'm getting my life together, I've returned to work. However about a year ago my CT scan and small bowel series shows some active inflammation at my terminal ileum. Never had a problem there before, so we up my Remicade dosing and after six months or more another round of imaging shows some improvement.
Now I am coming up on I think a year and a half of being on a double dose of Remicade every six weeks. After my last infusion two weeks ago I started experiencing some odd side effects. First of all I started developing psoriasis around my bellybutton and inner thighs. A lymph node on the left side of my neck swelled up to roughly the size of a golf ball, and my knees began to experience really severe joint pain.
My doctor believes the joint pain may be a sign that I am developing anti-bodies to the Remicade, a prospect that seriously frightens me. She also thinks that the other symptoms are a sign that my current Remicade dose is too high and needs to be lowered.
So now I am simply waiting, waiting to see what happens. I have to admit that I am really scared, I think for the first time this disease has made me afraid. It feels as though my health is failing and my body and life are falling apart in slow motion. For whatever reason, these comparatively minor symptoms have shaken me in a way that nothing has before. Perhaps I'm simply frightened of experiencing another bout of illness? I don't know. I do know that as of right now, I don't feel as though I can confess or share my fears and anxiety with any of the people in my normal support network. So, yeah... that's my story.
But, it seems that remicade has helped you and, my understanding is that if you need to change from remicade because of antibodies, another biologic (same class of medication) may do the trick such as humira or cimzia?? Did your GI discuss the possibility of switching to another biologic? Are you being tested for antibodies?
