Discussions By Condition: Medical Stories

Collagenous Colitis

Posted In: Medical Stories 3 Replies
  • Posted By: financialguy
  • July 9, 2013
  • 07:28 PM

I've had collagenous colitis (CC) for many years.  It was diagnosed through biopsies. The original treatment was using Asacol, which worked reasonably well for a number of years.  But then about 5 or 6 years ago, Asacol wasn't  controlling my condition consistently.  So, my gastroenterologist switched me to Entocort EC (3 mg) once a day and that seemed to do the trick, though I wasn't happy with the idea of taking a steroid.  In fact, a couple years ago, I was diagnosed with cataracts which were specifically caused by steroids.  In addition, my skin has become very thin and bruises very easily (usually takes 2-3 weeks for the bruise to go away).  Plus, I have swelling in my legs.  I asked if I could take a mild diuretic to counteract the swelling, and the gastro guy prescribed furosemide (20 mg, once per day) which helps some but not a lot as far as I can tell.

My dermatologist recommended seeing another gastro guy who suggested using Apriso (2 capsules per day) for a month while continuing the Entocort...which I've done.  He then wants to gradually back off of the Entocort, first by taking Entocort every other day, then every third day, etc.  If necessary, I'm to up the dose of Apriso to 4 capsules per day.  I'm in the first week of using Entocort every other day and things seem to be okay.  I had tried backing off Entocort to every other day a couple years ago without success.

I'm wondering if anyone has any experience with this course of treatment using Apriso.  It's still early in the process, so I may be back after a period of time saying that it didn't work...but reducing the use of steroids is a priority for me, especially since Entocort is supposed to have few side effects since it works in the colon--not my own experience, unfortunately.

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  • Dear Financialguy, I have been suffering from collagenous colitis for several years, in fact the symptoms started in 1993. Nothing controlled my CC until a world-famous hospital put me on Entocort 9 mg a day. They tapered me down to 6 mg after three weeks, and then 3 mg after another three weeks. It works bests when I am on the 9 mg a day. There are several bad side effects to the Entocort (budesonide is the generic version), one is weight gain, and another is constipation if your physician forgets to monitor you, and you are on it for too long. I was hospitalized for a bowel obstruction because of long-term use of the corticosteroid. I do have a word of caution for you. I am NOT a doctor, but I had a gastroenterologist tell me, "Well at least you don't have to worry about cancer!" That idiot was an arrogant Canadian doctor working in Fargo, ND. He actually told me I was too fat too have colitis! That gastroenterologist told me to go see a psychiatrist because I was crying on his exam table. I was having up to 13 explosive, watery bowel movements a day. My body was so dehydrated that my kidneys were forming a multitude of calcium oxalate stones (kidney stones). The stones would come out of my kidneys and get stuck in both ureters (the exact spot in both ureters) and I ended up with 1 CM stones in both of my ureters causing hydronephrosis (my kidneys couldn’t drain) so I went into kidney failure and almost died. All of this was caused because of the chronic diarrhea that the gastroenterologist didn’t believe that I had. So, I left Fargo, and drove down to Rochester, MN (where the “world-famous hospital” is located). I was seen by one of the best gastroenterologists in the world. This world-renowned specialist performed two full-blown colonoscopies on me within three years. Another gastroenterologist did an upper-endoscopy and he examined me from my mouth, down past my stomach, and into my large colon. Once again, they found the colitis, but they didn’t send the biopsies in for cancer screening. So, I had been examined from the top of my colon to the end, my rectum on multiple occasions by this world-renowned hospital. He diagnosed me with collagenous colitis, and put me on Entocort and Imuran (I can’t remember the dosage) and sent me on my way. What he failed to recognize was that the collagenous colitis wasn’t just colitis; there was cancer right under the colitis in several locations in my colon and in my rectum. However, he was in his 70’s, and he thought I was too young to have cancer, so he didn’t bother sending any biopsies in for cancer screening. He assumed the lesions in my rectum were hemorrhoids. Oops no biopsies of my rectum were sent in for cancer screening either! They ran multitudes of test (H. Pylori, gluten allergy, Crohns, IBD, gastritis, and stress tests) except the one that would have saved my life – cancer screening. So, when you see your physician next time, your gastroenterologist, ask specifically to do a cancer screening. Some physicians, even gastroenterologists are under the misguided impression that only patients with constipation get cancer, and we who have diarrhea are somehow safe. That man was wrong.PLEASE TAKE THE TIME TO HAVE A COLONOSCOPY for colorectal cancer sceening. Thank you. :cool: Goldie LocksI've had collagenous colitis (CC) for many years.  It was diagnosed through biopsies. The original treatment was using Asacol, which worked reasonably well for a number of years.  But then about 5 or 6 years ago, Asacol wasn't  controlling my condition consistently.  So, my gastroenterologist switched me to Entocort EC (3 mg) once a day and that seemed to do the trick, though I wasn't happy with the idea of taking a steroid.  In fact, a couple years ago, I was diagnosed with cataracts which were specifically caused by steroids.  In addition, my skin has become very thin and bruises very easily (usually takes 2-3 weeks for the bruise to go away).  Plus, I have swelling in my legs.  I asked if I could take a mild diuretic to counteract the swelling, and the gastro guy prescribed furosemide (20 mg, once per day) which helps some but not a lot as far as I can tell.My dermatologist recommended seeing another gastro guy who suggested using Apriso (2 capsules per day) for a month while continuing the Entocort...which I've done.  He then wants to gradually back off of the Entocort, first by taking Entocort every other day, then every third day, etc.  If necessary, I'm to up the dose of Apriso to 4 capsules per day.  I'm in the first week of using Entocort every other day and things seem to be okay.  I had tried backing off Entocort to every other day a couple years ago without success.I'm wondering if anyone has any experience with this course of treatment using Apriso.  It's still early in the process, so I may be back after a period of time saying that it didn't work...but reducing the use of steroids is a priority for me, especially since Entocort is supposed to have few side effects since it works in the colon--not my own experience, unfortunately.
    GoldenLocks 2 Replies Flag this Response
  • Dear Financialguy, I have been suffering from collagenous colitis for several years, in fact the symptoms started in 1993. Nothing controlled my CC until a world-famous hospital put me on Entocort 9 mg a day. They tapered me down to 6 mg after three weeks, and then 3 mg after another three weeks. It works bests when I am on the 9 mg a day. There are several bad side effects to the Entocort (budesonide is the generic version), one is weight gain, and another is constipation if your physician forgets to monitor you, and you are on it for too long. I was hospitalized for a bowel obstruction because of long-term use of the corticosteroid. I do have a word of caution for you. I am NOT a doctor, but I had a gastroenterologist tell me, "Well at least you don't have to worry about cancer!" That idiot was an arrogant Canadian doctor working in Fargo, ND. He actually told me I was too fat too have colitis! That gastroenterologist told me to go see a psychiatrist because I was crying on his exam table. I was having up to 13 explosive, watery bowel movements a day. My body was so dehydrated that my kidneys were forming a multitude of calcium oxalate stones (kidney stones). The stones would come out of my kidneys and get stuck in both ureters (the exact spot in both ureters) and I ended up with 1 CM stones in both of my ureters causing hydronephrosis (my kidneys couldn’t drain) so I went into kidney failure and almost died. All of this was caused because of the chronic diarrhea that the gastroenterologist didn’t believe that I had. So, I left Fargo, and drove down to Rochester, MN (where the “world-famous hospital” is located). I was seen by one of the best gastroenterologists in the world. This world-renowned specialist performed two full-blown colonoscopies on me within three years. Another gastroenterologist did an upper-endoscopy and he examined me from my mouth, down past my stomach, and into my large colon. Once again, they found the colitis, but they didn’t send the biopsies in for cancer screening. So, I had been examined from the top of my colon to the end, my rectum on multiple occasions by this world-renowned hospital. He diagnosed me with collagenous colitis, and put me on Entocort and Imuran (I can’t remember the dosage) and sent me on my way. What he failed to recognize was that the collagenous colitis wasn’t just colitis; there was cancer right under the colitis in several locations in my colon and in my rectum. However, he was in his 70’s, and he thought I was too young to have cancer, so he didn’t bother sending any biopsies in for cancer screening. He assumed the lesions in my rectum were hemorrhoids. Oops no biopsies of my rectum were sent in for cancer screening either! They ran multitudes of test (H. Pylori, gluten allergy, Crohns, IBD, gastritis, and stress tests) except the one that would have saved my life – cancer screening. So, when you see your physician next time, your gastroenterologist, ask specifically to do a cancer screening. Some physicians, even gastroenterologists are under the misguided impression that only patients with constipation get cancer, and we who have diarrhea are somehow safe. That man was wrong.PLEASE TAKE THE TIME TO HAVE A COLONOSCOPY for colorectal cancer sceening. Thank you. :cool: Goldie LocksDear Golden Locks, thanks for sharing your story...scary as it is! I'll definitely mention this to my gastro guy because, even though I get colonoscopies every 5 years, he's never mentioned screening for cancer. Very sorry about your condition. I take it that you've now had the cancer screening and have been successfully treated? I'm in my first week (of 2 weeks) of taking 2 Apriso capsules (0.375g each) each day for two days and then, on the third day, taking both the Apriso and 1 capsule of Budesonide EC (3mg)...so far so good, but time will tell. The next step is to eliminate the Budesonide altogether, with the idea that I could have to go up to 4 Apriso capsules a day if needed. We shall see. I've read an interesting article about the difference between Asacol (which I had taken before getting onto Entocort--the generic Budesonide wasn't out at that time) and Apriso...it seems that the Apriso is able to withstand the acidity in the stomach more readily than Asacol, so it makes it to the colon where it needs to take effect. Thanks again for sharing!
    financialguy 1 Replies Flag this Response
  • A friend of mine is also suffering from colitis for last 7/8 years, and like you said Asacol is the one medicine he is taking regularly. Most of the time the situation is under control, but sometimes it becomes severe with other problems. Will it be curable or under control?
    Ammy Wats 53 Replies Flag this Response
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