Hello everyone,
I’m writing from Seattle, Washington, USA.
About me:
I am 55 years old and was diagnosed with CD in early 2005 in a rather round-about way.
My mother has an autoimmune disease: rheumatoid arthritis. And my uncle on the same side died of ulcerative colitis many years ago, before we had the treatments we have today.
I had been having mild symptoms of Crohn’s since my late teens, and had even been to the doctor more than once with complaints about same. My doctors (two different ones) did some very general tests and told me I was fine. One said I just had “a nervous stomach”.
The years go by.
I have restless legs syndrome which is a sleep disorder characterized by creepy-crawley sensations in the legs when they are not moving, and which are relieved by moving them. This is quiet distracting and often significantly disturbs sleep.
OK, so I go to sleep specialist and one of the things he does is measure my blood serum iron level; low serum iron can greatly aggravate restless legs. That same afternoon the physician himself calls me back to let me know my level was critically low and that I should see my primary care doctor as quickly as possible to get it checked out and to let me know that I should get a colonoscopy ASAP. I expect they were thinking I probably had colon cancer and that that was the source of the chronic bleeding which was making my iron low.
Off I go to my primary care physician and she makes arrangements for me to have a colonoscopy the following week.
Off to the colonoscopy. I am pretty worried about what they are going to find, but Crohn’s disease never crosses my mind.
There I am on the exam table, full of sedating medications and the gastroenterologists says to me “did you know you have Crohn’s ?” “No”, I reply, “but it sure explains a lot”.
I am started on Pentasa, which does not work for me. My gastroenterologist’s office turns out to be extremely disorganized, so I switched to another physician, who has been great. I am tried on several medications, including Remicaide, which worked pretty well, and when Humira becomes available, I switch to that with good to very good results. At that point I was only on Sulfasalazine and Humira and having pretty good control.
Then, one day, while perusing the internet, I find a site discussing low dose naltrexone as possible treatment for Crohn’s and, after more investigation, I decide I want to try it. That was almost two years ago.
I went to my GI doc and asked her about it. She said she had heard about it but was reluctant to try it given the small number of studies. I finally persuaded her that it was worth a try: there are very few side effects in most people, it is inexpensive, and the risks associated with long term use – like severe infection and increased risk of some cancers- are negligible as far as we know.
My symptoms are mild to moderate, so the risks of having a severe flare-up were fairly low. After a promise that I would be right back on the Humira if the Crohn’s increased in activity, she agreed and gave me a prescription.
Naltrexone has worked very well for me, despite my own initial skepticism. I am now on a small dose of sulfasalazine and 6mg of naltrexone every night as my only treatments.
Once in a while I have a day or two where I begin to have, what seem to be, mild gut symptoms. I take a dose of the probiotic Align (no other brand does the trick), and they subside within 24 hours.
I still have trouble with my serum iron level, but it appears to be an absorption problem rather than a bleeding problem.
I am excited to find my way here and look forward to learning from others.
Aisling
I’m writing from Seattle, Washington, USA.
About me:
I am 55 years old and was diagnosed with CD in early 2005 in a rather round-about way.
My mother has an autoimmune disease: rheumatoid arthritis. And my uncle on the same side died of ulcerative colitis many years ago, before we had the treatments we have today.
I had been having mild symptoms of Crohn’s since my late teens, and had even been to the doctor more than once with complaints about same. My doctors (two different ones) did some very general tests and told me I was fine. One said I just had “a nervous stomach”.
The years go by.
I have restless legs syndrome which is a sleep disorder characterized by creepy-crawley sensations in the legs when they are not moving, and which are relieved by moving them. This is quiet distracting and often significantly disturbs sleep.
OK, so I go to sleep specialist and one of the things he does is measure my blood serum iron level; low serum iron can greatly aggravate restless legs. That same afternoon the physician himself calls me back to let me know my level was critically low and that I should see my primary care doctor as quickly as possible to get it checked out and to let me know that I should get a colonoscopy ASAP. I expect they were thinking I probably had colon cancer and that that was the source of the chronic bleeding which was making my iron low.
Off I go to my primary care physician and she makes arrangements for me to have a colonoscopy the following week.
Off to the colonoscopy. I am pretty worried about what they are going to find, but Crohn’s disease never crosses my mind.
There I am on the exam table, full of sedating medications and the gastroenterologists says to me “did you know you have Crohn’s ?” “No”, I reply, “but it sure explains a lot”.
I am started on Pentasa, which does not work for me. My gastroenterologist’s office turns out to be extremely disorganized, so I switched to another physician, who has been great. I am tried on several medications, including Remicaide, which worked pretty well, and when Humira becomes available, I switch to that with good to very good results. At that point I was only on Sulfasalazine and Humira and having pretty good control.
Then, one day, while perusing the internet, I find a site discussing low dose naltrexone as possible treatment for Crohn’s and, after more investigation, I decide I want to try it. That was almost two years ago.
I went to my GI doc and asked her about it. She said she had heard about it but was reluctant to try it given the small number of studies. I finally persuaded her that it was worth a try: there are very few side effects in most people, it is inexpensive, and the risks associated with long term use – like severe infection and increased risk of some cancers- are negligible as far as we know.
My symptoms are mild to moderate, so the risks of having a severe flare-up were fairly low. After a promise that I would be right back on the Humira if the Crohn’s increased in activity, she agreed and gave me a prescription.
Naltrexone has worked very well for me, despite my own initial skepticism. I am now on a small dose of sulfasalazine and 6mg of naltrexone every night as my only treatments.
Once in a while I have a day or two where I begin to have, what seem to be, mild gut symptoms. I take a dose of the probiotic Align (no other brand does the trick), and they subside within 24 hours.
I still have trouble with my serum iron level, but it appears to be an absorption problem rather than a bleeding problem.
I am excited to find my way here and look forward to learning from others.
Aisling
What part of the area are you from? 
