Hi;:sign0085:
I have posted previously, but lately have been having very bad days, almost living in the bathroom in the tub. I am confused and so very frustrated.
I am 47 yrs old just diagnosed 2 years ago after a bowel obstruction, yes late in life and because of being diagnosed so late I think my test shows damage that just can't be fixed.
Anyway surgery 2 years ago for obstruction surgeon told me they were going to remove the obstruction and after that I would be great able to eat again. I had one other previous bowel surgery before that to have my appendix removed about 5 years ago. I had several endo and colonoscopy throughout the years showing no problems.
Anyway when they removed about 20 cm of small bowel that later tested positive for crohns in the lab. they also did strictureplasty in 4 other areas. Didn't even look like crohns to the surgeon. For 2 years since pretty much been told all in my head and after being on azathioprine for about a year and another surgery to which I was told there is nothing wrong with me and maybe I have IBS as I am in remission.
Finally they sent me for a capsule endoscopy and here are the results (all in the small bowel):
time issue
115 min surgical clip, small ulcer, deformity possible anastomosis
181 min anastomosis, deformity, small pseudodiverticulum
195 min Generalized edema
198 min small ulceration with deformity
220 min aphthous ulcer with non surgical stricture , marked edema, erythema (45 min to pass)
289 min black base aphthous ulcer, surgical stitch, stenosis, small inflammatory polyp (over 45 min to pass)
340 min 2 subtle areas stenosis very distal ileum before large bowel
total time 345 min to large bowel, no large bowel issues noted
I am on azathioprine and just recently started remicade infusion.
I've been informed that remicade will not help the strictures and my GI doctor told me he did not feel that the small amount of crohn's in my bowel would be causing my issues. He still feels more IBS is my problem. But he finally prescribed some pain medication, dilaudid, of which I am allow to have 1-2 tabs(mg) up to 3x a day. The pain medication is not helping, I can't eat and have lost more weight yet again. My weight fluctuates like crazy. I stop eating and start to feel somewhat better then I start eating and get very sick again pain, nausea vomiting (everyday if I do not take zofran) bloating (stomach is always rock hard). I am just so very tired of being sick. I do not see an end in sight.
Yes, I am on a low fibre diet. I am also allergic to dairy as well as being severely lactose intolerant. Also recently diagnosed with severe food allergies to sugar cane, cranberries, sesame seeds.
So is there anyone out there that has a similar diagnosis that can tell me what if anything that worked for them.
I am so tired of fighting being sick. I just need it all to get better. I do not need to be healthy, but I need to be able to at least walk without severe pain all the time. Can't have more pain meds, as that apparently will cause more harm than good, so I just have to suffer. I am familiar with being sick as I grew up with asthma and spent time in the hospital every winter.
I am just so exhausted. I've worked hard all my life, had a good job, which I was dismissed from after my long term disability insurance declined me after they were informed I was in remission. I do have a lawyer taking care of that now.
I really need some hope that it can get better. I really do not feel at this time it will as recently I have gotten much worse since starting remicade. Living in the bathtub is not fun.
Thanks,
Mag
I have posted previously, but lately have been having very bad days, almost living in the bathroom in the tub. I am confused and so very frustrated.
I am 47 yrs old just diagnosed 2 years ago after a bowel obstruction, yes late in life and because of being diagnosed so late I think my test shows damage that just can't be fixed.
Anyway surgery 2 years ago for obstruction surgeon told me they were going to remove the obstruction and after that I would be great able to eat again. I had one other previous bowel surgery before that to have my appendix removed about 5 years ago. I had several endo and colonoscopy throughout the years showing no problems.
Anyway when they removed about 20 cm of small bowel that later tested positive for crohns in the lab. they also did strictureplasty in 4 other areas. Didn't even look like crohns to the surgeon. For 2 years since pretty much been told all in my head and after being on azathioprine for about a year and another surgery to which I was told there is nothing wrong with me and maybe I have IBS as I am in remission.
Finally they sent me for a capsule endoscopy and here are the results (all in the small bowel):
time issue
115 min surgical clip, small ulcer, deformity possible anastomosis
181 min anastomosis, deformity, small pseudodiverticulum
195 min Generalized edema
198 min small ulceration with deformity
220 min aphthous ulcer with non surgical stricture , marked edema, erythema (45 min to pass)
289 min black base aphthous ulcer, surgical stitch, stenosis, small inflammatory polyp (over 45 min to pass)
340 min 2 subtle areas stenosis very distal ileum before large bowel
total time 345 min to large bowel, no large bowel issues noted
I am on azathioprine and just recently started remicade infusion.
I've been informed that remicade will not help the strictures and my GI doctor told me he did not feel that the small amount of crohn's in my bowel would be causing my issues. He still feels more IBS is my problem. But he finally prescribed some pain medication, dilaudid, of which I am allow to have 1-2 tabs(mg) up to 3x a day. The pain medication is not helping, I can't eat and have lost more weight yet again. My weight fluctuates like crazy. I stop eating and start to feel somewhat better then I start eating and get very sick again pain, nausea vomiting (everyday if I do not take zofran) bloating (stomach is always rock hard). I am just so very tired of being sick. I do not see an end in sight.
Yes, I am on a low fibre diet. I am also allergic to dairy as well as being severely lactose intolerant. Also recently diagnosed with severe food allergies to sugar cane, cranberries, sesame seeds.
So is there anyone out there that has a similar diagnosis that can tell me what if anything that worked for them.
I am so tired of fighting being sick. I just need it all to get better. I do not need to be healthy, but I need to be able to at least walk without severe pain all the time. Can't have more pain meds, as that apparently will cause more harm than good, so I just have to suffer. I am familiar with being sick as I grew up with asthma and spent time in the hospital every winter.
I am just so exhausted. I've worked hard all my life, had a good job, which I was dismissed from after my long term disability insurance declined me after they were informed I was in remission. I do have a lawyer taking care of that now.
I really need some hope that it can get better. I really do not feel at this time it will as recently I have gotten much worse since starting remicade. Living in the bathtub is not fun.
Thanks,
Mag
