Hello everyone!
I'm Kay. I am 50 years old and I have been officially diagnosed with Crohn's for the last five years or so though I have probably had it much longer. I was also diagnosed with Lupus in 2000 and Type 2 diabetes 2 years ago.
I currently take sulfasalazine for my Crohn's. Used to take Imuran but my liver levels went sky high and after two years they took me off it to try to save me from having to have a liver transplant. My liver is in bad shape so some treatments are completely unavailable as we have to closely monitor my liver levels (every 4 weeks)
Cannot do Remicade or Asacol and probably several other things. We try to limit my prednisone because it has caused me to have osteoporosis and low vitamin d count. And ultimately I have had 3 broken bones this year as a result and had to have shoulder surgery. So I only take prednisone as a last resort. Also, being a diabetic-- the prednisone raises my blood sugar levels sky high and that is no good either.
Finding foods that I can actually digest that don't send my sugars into the 300 range is quite a challenge as well.
At the moment --- for the last four weeks or so--- I have not been able to tolerate food well at all. I have almost no appetite most of the time. Or worse, I have such horrid nausea I cannot tolerate the smell of food. But if I don't eat I have seizures so I force myself to eat or at least drink. Then once I do eat or drink I have horrid bouts of running to the bathroom. oo:
I usually have at least 10-17 bowel movements before 3 pm each day. And sometimes I am starving after. Sometimes the nausea is better and sometimes not. My stomach hurts pretty much all the time. I have awful mouth sores and ache all over but I usually think all that is related to my Lupus and not my Crohn's or UC. This last two weeks I have had the upper GI endoscopy which was normal. Then the small bowel follow through where you drink the barium. They said I had a little bit slow but fairly normal. There was significant swelling at the ileum something or other. Maybe he said junction. (if it wasn't almost 5 am I might remember better LOL):ybatty:
My next test is the colonoscopy. This will be my 4th one in 3 years.
The only way I can eat anything at the moment is if I take a Phenergan suppository or pill before I eat. And even then mostly all I can eat is very bland foods like mashed potatoes and baked chicken.
Does anyone else here have LUPUS and Crohn's? AND DIABETES?
What kind of diet works for you?
I cannot seem to find foods to eat that don't make me super sick or else they raise my blood sugar.
I am pretty sure that we have exhausted all possible meds and my doctor is going to suggest some surgical option next. He has been talking about removing part or all of my colon for the past two years. I guess I may have reached that point. I am pretty scared. Any advice.
Oh. I know I have rambled but I should also mention that in the past six weeks I have had to go to the ER 13 times to get IVs for being dehydrated. They have such a hard time getting an IV started to give me fluids that I had to have a minor surgery and they put in a little port. Now I can get blood-work and IVs right in my port. Cuz nurses and doctors couldn't get an IV in me after like 2 hours of trying. They hated seeing me coming and begged for me to get the port. I have had the port for 16 days now. They already had to use it to give me fluids.
Clearly I have a lot more than the Crohn's and UC. I am considered a challenging patient and I never have minor procedures done in a doctors office like other patients. I always have to go to the hospital--even for very very minor outpatient procedures.
Thanks in advance for listening to my long story.
Hugs,
Kay
I'm Kay. I am 50 years old and I have been officially diagnosed with Crohn's for the last five years or so though I have probably had it much longer. I was also diagnosed with Lupus in 2000 and Type 2 diabetes 2 years ago.
I currently take sulfasalazine for my Crohn's. Used to take Imuran but my liver levels went sky high and after two years they took me off it to try to save me from having to have a liver transplant. My liver is in bad shape so some treatments are completely unavailable as we have to closely monitor my liver levels (every 4 weeks)
Cannot do Remicade or Asacol and probably several other things. We try to limit my prednisone because it has caused me to have osteoporosis and low vitamin d count. And ultimately I have had 3 broken bones this year as a result and had to have shoulder surgery. So I only take prednisone as a last resort. Also, being a diabetic-- the prednisone raises my blood sugar levels sky high and that is no good either.
Finding foods that I can actually digest that don't send my sugars into the 300 range is quite a challenge as well.
At the moment --- for the last four weeks or so--- I have not been able to tolerate food well at all. I have almost no appetite most of the time. Or worse, I have such horrid nausea I cannot tolerate the smell of food. But if I don't eat I have seizures so I force myself to eat or at least drink. Then once I do eat or drink I have horrid bouts of running to the bathroom. oo:
I usually have at least 10-17 bowel movements before 3 pm each day. And sometimes I am starving after. Sometimes the nausea is better and sometimes not. My stomach hurts pretty much all the time. I have awful mouth sores and ache all over but I usually think all that is related to my Lupus and not my Crohn's or UC. This last two weeks I have had the upper GI endoscopy which was normal. Then the small bowel follow through where you drink the barium. They said I had a little bit slow but fairly normal. There was significant swelling at the ileum something or other. Maybe he said junction. (if it wasn't almost 5 am I might remember better LOL):ybatty:
My next test is the colonoscopy. This will be my 4th one in 3 years.
The only way I can eat anything at the moment is if I take a Phenergan suppository or pill before I eat. And even then mostly all I can eat is very bland foods like mashed potatoes and baked chicken.
Does anyone else here have LUPUS and Crohn's? AND DIABETES?
What kind of diet works for you?
I cannot seem to find foods to eat that don't make me super sick or else they raise my blood sugar.
I am pretty sure that we have exhausted all possible meds and my doctor is going to suggest some surgical option next. He has been talking about removing part or all of my colon for the past two years. I guess I may have reached that point. I am pretty scared. Any advice.
Oh. I know I have rambled but I should also mention that in the past six weeks I have had to go to the ER 13 times to get IVs for being dehydrated. They have such a hard time getting an IV started to give me fluids that I had to have a minor surgery and they put in a little port. Now I can get blood-work and IVs right in my port. Cuz nurses and doctors couldn't get an IV in me after like 2 hours of trying. They hated seeing me coming and begged for me to get the port. I have had the port for 16 days now. They already had to use it to give me fluids.
Clearly I have a lot more than the Crohn's and UC. I am considered a challenging patient and I never have minor procedures done in a doctors office like other patients. I always have to go to the hospital--even for very very minor outpatient procedures.
Thanks in advance for listening to my long story.
Hugs,
Kay