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Sally's Collagenous/Lymphocytic/Microscopic Colitis Page
My Story

May 6, 2001
 
I am a 59 year old woman who has been having recurrent bouts of severe diarrhea for over ten years. At first, it was rather like having the 24 hour stomach flu for a week, but it gradually got worse and worse. The episodes of frequent (20 or 30 times a day), painful, and explosive diarrhea were truly frightening and completely life limiting. My primary care physician sent me to a gastroenterologist who seemed to have no idea whatsoever about what was the matter with me. His method of diagnosis was to guess that I had one condition (ulcerative colitis, IBS, IBD, Crohns Disease, a bacterial infection caused by the c. difficile bacteria, etc.), he would treat me for that diagnosis du jour, and when I got no better or got worse, he would try another diagnosis and treatment. I had blood tests until my arms looked like I had been mainlining heroin, I took innumerable specimens to the lab (when I could leave the house), and tried dozens of medications, diets, stress reducing regimens, etc. etc. While all of this was going on I was on an emotional roller-coaster between hope and despair. About the only bright spot in all of this was that I had a colonoscopy and was reassured that I did not have colon cancer. The colon looked normal!

After about two years of this, I had a spontaneous remission. I suddenly stopped being symptomatic, stopped taking all medication and was fine for about three years. Then suddenly the symptoms reappeared. This time I went to a different GI specialist. She scheduled me for another colonoscopy/biopsy on 12/20/99. This one showed no signs of ulcerative colitis (or cancer), but the biopsy did reveal that I had collagenous colitis. I was very lucky to find this particular GI specialist because she had done extensive research into CC when in medical school and she knew what to look for.

I was prescribed a high dose of prednisone (30mgs/day) which stopped the diarrhea. I did, however, suffer many other side-effects since this is by no means a benign drug. My blood pressure shot up, I had bouts of tachycardia, I developed accute insonmia, my osteoporosis quickly got worse, and I also developed glaucoma. These are some of the short-term immediate effects. Long term, I can expect liver and kidney damage. After the initial high dosage, with my doctors supervision, I started to decrease the dosage to keep all these side-effects to a minimum. Once I got to a certain level (about 15 mgs/day of prednisone) the diarrhea returned.

This was when my GI doctor prescribed Lotronex even though I was not an IBS patient. Within three and a half weeks I was having normal bowel movements and was able to reduce the prednisone to 5 mgs/day. For the first time in three years, I was able to get my life back and function as a relatively normal human being. For the seven months that I was on Lotronex I experienced no side-effects whatsoever. I was carefully educated and monitored by both my doctor and my pharmacist as to what to be aware of. We gradually reduced my Lotronex dosage to 1 mg/day and I was fine.

When Lotronex was recalled I was devastated. I got the news at the pharmacy and burst into tears. I had some Lotronex stockpiled and my GI doctor gave me samples that she had left. I reduced my dosage to 1 mg/3 days thinking that that way I could make it last to maybe August. Apparently, the dosage was too low because in March 2001 I started with the diarrhea again and have been virtually housebound ever since. I was so sick on the 20th of March that I had to stay home from my grandsons 5th birthday party. I called my GI doctor and reluctantly we started me back on high dosages of prednisone. This time 40 mgs/day.

Meanwhile, I had myself tested for gluten intolerance by Dr. Kenneth Fine in Texas. This test showed that I am indeed gluten sensitive, but that I have suffered no malabsorbtion damage to the colon YET. I have started on a gluten free diet and I must say, that in the ten days or so that I have been on the diet I have felt better than I have in years. My diarrhea is gone, my stools are normal, my energy has returned and along with all that, my zest for life. The diet is not all that difficult. I have never been particularly fond of bread or other baked goods so that is not a problem. I do miss pasta, though, but have hopefully found a substitute at the Gluten Free Pantry online . Also a mayonnaise. The things I have to watch out for are the hidden toxins like barley malt used as a flavoring and wheat flour used as a thickening agent in everything including mustard and canned chicken stock! More information on living gluten free can be found at the Celiac.com website.

I am also taking a lactobacillus supplement called Culturelle. This is similar to the acidophillus bacteria found in yogurt, but is far more powerful and is easier to digest for those with compromised colons. Culturelle "reflowers" the instinal tract with good bacteria that have been lost by constant bouts of diarrhea and medication.

I am feeling very well. I am slowly reducing my Prednisone dosage every week and am now down to 25 mgs/day. I hope I can reduce it further and, maybe even dispense with it entirely. If my symptoms return, Dr. Fine and my GI doctor here in Eugene have other treatment alternatives to try.

There is life with CC/MC and it is a good one.

 
May 27, 2001

I am still feeling well. I am down to 20 mgs/day of Prednisone and I am still on the GF diet. I have been working out on a neighbor's treadmill to the point where I have a sore muscle in my leg and I have to rest it for a few days to give it a chance to recover. Imagine that! Sore mucles from exercising!

I have heard from many of you and I always enjoy getting your letters. Keep them coming. They keep me going!

 
August 14, 2001

Things have been kind of rocky of late. I made it down to 16 mgs/day of prednisone and the symptoms returned big time. The gluten free diet that I was so excited about does not seem to be working on the CC/MC. This is not unusual. I am on the gluten free diet because I tested positive for gluten sensitivity and if I continue to eat it, I will develop full blown Celiac Disease. It is not a cure for CC/MC. It did seem to be helping for awhile, though. :-( Now I am on the Pepto Bismol treatment and that has allowed me to decrease the prednisone by another 4 mgs. I am down to 12. My goodness, this is a long drawn out process and it does get discouraging sometimes. Even my GI doctor just shakes her head. She and I are practicing what she calls "T & E Medicine." Trial and Error. Sound familiar?

Not being one to sit around a wallow in my misery too long, I have sniveled and whined a bit and now the big deal is the new support group for all of us on Yahoo. I hope you will come and join. There we can all snivel and whine together and maybe share a few laughs. Most of all we will know we are not alone. The URL for the group is:

 
October 18, 2001

Lots has happened since I last updated this page.

I left off in the middle of August when I had gotten down to 12 mgs/day of prednisone and was trying the Pepto Bismol treatment. That did not work for me. All it did was turn my diarrhea black. During the last week of August, the diarrhea returned with a vengeance. I literally could not get off the toilet except for rare occasions when I collapsed on my bed from exhaustion. I have never been so sick in my life. I was not only having diarrhea, but I was lightheaded, dizzy, I had pain all over my body, my heart raced, and my blood pressure kept going up and up. On Sunday, the 2nd of September, I called my daughter at 7 AM and she came rushing over. She took one look at me and told me I was going to the Emergency Room.

That's where I ended up. They did blood tests and urine tests and a rectal exam and then we waited for the results. While we waited they inserted an IV in my hand in case they needed to force fluids. The tests came back showing that I was suffering from a urninary tract infection and severe electrolyte imbalance due to dehydration. The interesting thing about that is that I had been drinking lots of water while having the horrible diarrhea. Apparently that is not a good thing to do. Water flushes all the electrolytes out of your body and that, combined with the diarrhea, put me in very serious shape. I should have been drinking Gatorade or something containing a lot of sodium and especially potassium. The Emergency Room doctor increased my prednisone back up to 30 mgs/day and started forcing fluids orally. I did not have to use the IV, fortunately.

My daughter brought me home and ran to the store to buy Gatorade and any other fluid she could find that contained potassium.orange juice and apricot nectar and peach nectar and V-8 juice and lots of chicken broth. It took me almost a week to recover and start feeling semi-human again.

Meanwhile, I had talked to my GI doctor who prescribed an anti-biotic for the UTI. Then we discussed where to go from there. Everything we had tried up to this point had failed and the only thing that worked for me was prednisone. It looked like I had become prednisone dependent and was suffering from adrenal insufficiency. This is what happens when some people take a synthetic corticosteroid (prednisone) for a long time. The adrenal glands just stop working and will not kick in when the prednisone is decreased. My doctor and I discussed Imuran.

Imuran is an immuno-suppressant drug used with transplant patients to keep them from rejecting their new organ. The idea here is that, since CC in an auto-immune disease and that my body is treating my colon as if it were a foreign object, Imuran might suppress this reaction and stop my immune system from, essentially, trying to kill my gut. If that were to be true, then, once the Imuran started to take effect, we could start to reduce the amount of prednisone I am taking. Which is also killing me. However, since Imuran lowers a person's resistance to infection and I already had a urinary tract infection, we had to wait to start until that was cleared up. I finished the antibiotic on September 15 and started the Imuran on September 18. This is a very serious drug with its own set of side effects, not the least of which is the potential for causing leukemia in rare cases. I am hoping I am not one of those. While I am on it, I am being closely monitored. Blood is being drawn every other week to check my liver functions and my white blood cell count. My WBC is quite high, but we think that is due to prednisone.We are having to go slowly with this because it can take Imuran from 4 to 6 months to reach therapeutic levels in the blood stream.

I last saw my GI doctor on October 15 and so far, so good. I decreased the prednisone from 25 mgs/day to 20 on the 16th. I have not noticed any worsening of symtoms. Actually, I feel pretty good, considering. My stools have returned to normal thanks to the prednisone. However, I have developed the "moon-face" which is characteristic of long-time prednisone users. My eye-sight is slowly worsening and I know that osteoporosis is gnawing away at my bones. We hope that I can tolerate Imuran and that it will kick in soon so that I can reduce the prednisone further without ending up in the hospital again from non-stop diarrhea and dehydration.

How do I feel emotionally about all of this? Well, at first I was all upset sad and angry and afraid and terribly confused. But then I got to thinking about how things really are with this life and death business. All we really have is now. I think of those poor people who walked out their front doors on September 11 and went to work at the World Trade Center and the Pentagon. And the people who got on those planes. Just another day, right? And it wasn't. That could happen to any of us. Not as dramatically, but just as surely. I came to the decision that worrying about all of this is not going to change anything except to make me sicker since stress is very bad for what ails us. I am eventually going to die of something. That is certain and I have no control over when or how that will happen. What I do have control over (somewhat) is the present. I can decide whether to spend the present fretting and fuming and stewing or to spend it living my life. Not much of a choice, eh? So, I garden, I play with my grandson, my son and I are going to build me some new front steps this weekend, I go out to dinner, I read my favorite mystery novels, and life just goes on. For now I am feeling good. I think that is all I can ask. Like that wise old philosopher, Scarlett O'Hara, said, "Tomorrow is another day."

 
January 10, 2002

Time sure flies when you're having fun!

Well, since the last time I wrote, I have been diarrhea free. I attribute that to the fact that I have been steadily taking Imuran (for which I have my liver functions tested once a month) and also steadily reducing my prednisone dosage. This time, however, I completely disregarded my GI doctor's "suggestion" and I have been decreasing the pred at a much slower rate than she would like.

I don't know if it is the Imuran or the ridiculously slow rate (.5 mgs every two weeks) at which  I have been decreasing pred or both.but, whatever it is, it seems to be working. I am down to what has been, in the past, The Dose of Doom. I am at 16 mgs/day of pred. Every time I have tried to wean myself off prednisone before, I have always reached the 16 mg point and have had a terrible flare-up. And for a couple of weeks preceeding. The last time I got to 16 mgs/day, I ended up in the hospital. This time I am here and nary a sign of symptoms. In two weeks I will be down to 15.5 mgs/day and that will seem like a major accomplishment!

I am suffering from the Other Shoe Syndrome, however. That is when you have felt relatively decent for awhile and you anxiously wait for Something Bad to happen. After years of being on this merry-go-round, it just isn't logical to expect everything to suddenly be okay and not to wonder when all hell will break loose. I am trying very hard to cope with that by living one day at a time. Today I am fine and I won't worry about tomorrow until it gets here. This is a lot easier said than done, but the little bit I have done is a great help. Maybe as I practice more I will get better at it.

The latest item that may be of interest is the recent approval of Entocort (budenoside) by the FDA for use in this country. Never mind that it has been used in Canada for years. Entocort is a corticosteroid like prednisone, but, unlike prednisone, it supposedly has far fewer of the evil side-effects. I have an appointment with my GI doctor on January 24 to discuss switching. This is a toughie because I am feeling well, right now and I do believe that if it ain't broke, don't fix it. On the other hand, even though I am feeling well and have been diarrhea free for four months, I know that the prednisone is busily working inside doing who knows what to my bones and my vision is becoming a problem. Furthermore, the Imuran is wreaking havoc with my immune system. I can't FEEL these side effects so I imagine I am in some kind of denial that they even exist. And, to make it even more difficult, there is no guarantee that Entocort will do what the combo of pred and Imuran has done for me. I do NOT want to take the risk of switching, having it not work, and having to start all over again with a high prednisone dosage. I really don't know at the moment what I will decide. This is definitely Trial and Error Medicine and I am so tired of all the errors. When I know what I am going to do, I will post it here and we'll see how it goes. One day at a time.

I hope that everyone out there is taking care. If you have questions or just want to yak at me, please feel free to write. That includes any weeping, wailing, bitching, and moaning you may care to do. I have done plenty of that myself.