I ‘may’ have Collagenous Colitis based on my research and physical symptoms, condition. It has been a nightmare to get an appointment with the local G.I. doctor but finally will be seen on 10-18-17. I want to be prepared and just hope I have the strength to make it to the appointment. What I would like is to know if anyone else has even heard of this and if so, seen a G.I. doctor and if so, what was the treatment? FYI: No blood in bowel movements but diarrhea 24/7 now for months, getting worse, losing weight. Scared. I am suppose to pick a group but don’t see “colitis’ as an option and don’t know what else to call it. Overwhelming. I am new to all this so just picked Gastroparesis because it had the word ‘gastro’ in it.
Interested in more discussions like this? Go to the Gastroparesis group.
 |
 |
 |
Like
Helpful
Hug
Its good that you are seeing a gi and i know what a pain it can be to get an appointment. Its important not to get too far ahead of yourself regarding a “self diagnosis” If you indeed have colitis there are several different causes and it may take awhile to sort out. Evaluation can include blood work and a colonoscopy as well as other tests. Most people with “chronic” colitis will have either crohns or ulcerative colitis. Let us know how your appointment goes and what your learn. Remember colitis is treatable!
Best
C
@charles, thank you for your kind, informative reply! Brought me to tears that someone, you, took the time to respond from a group that may not even be the right one for whatever I may have. Your reassurance that if it is colitis it is treatable is very comforting, though I would like the whole problem to just go away (denial). The appointment is a week from today, so I wait and pray nothing gets worse before that date. Blessings, barb2
Please let us know how your appointment goes and what you learn. We are all here to share and support
Best
C
@charles Well, you were certainly correct about getting G.I. appointments take a long time. I finally had a colonoscopy on 11-2-17 where biopsies were taken from a number of sites. After dealing with the most incompetent medical practice I finally saw the doctor (because I had to keep calling, turns out they forgot to scan my results into their system) who said I had Collagenous Colitis. Without describing in detail how awful this is, because I am certain others have it far worse, I am wondering if I am even in the right group to be posting to. I am trying to find others who may also had this diagnosis that can only be obtained through the biopsy of a very normal looking G.I. tract. The doctor did not give me any information other than two ways to treat with one OTC and another being a steroid that i am not (yet) willing to take. He had no information about possible causes or alternative treatments through diet, so I came away feeling like I had been on a conveyer belt, processed and pushed out the door. Any help by you or anyone who reads this would be appreciated. Thank you Charles for you kindness in reaching out to me and your words of wisdom that I took to heart 🙂
Many conditions are difficult to diagnose and poorly understood – this is one of them. Unfortunately patients usually have to “shop around” a bit to find the “right” Gi doc which both has an interest in seeing Collagenous colitis patients and is someone you “connect” with. Collagenous colitis is a type of bowel inflammation that affect the colon (large intestine) which is not related to Ulcerative colitis or crohn’s disease (inflammatory bowel disease) The cause of collagenous colitis is unknown but thought to be due to bacteria and their toxins, viruses, or nonsteroidal anti-inflammatory drugs (NSAIDs) or an autoimmune response, which means that the body’s immune system destroys cells for no known reason. Treatment varies depending on symptoms and severity – sometimes it resolves spontaneously, but most patients have recurrent symptoms. Lifestyle changes aimed at improving diarrhea are usually tried first. Recommended changes include reducing the amount of fat in the diet, eliminating foods that contain caffeine or lactose, and not using NSAIDs. If this doesn’t improve the symptoms medications are often used to control the symptoms; Antidiarrheal medications such as bismuth subsalicylate and bulking agents can reduce diarrhea. Anti-inflammatory medications can be tried as well as Immunosuppressive agents but these are rarely needed. Its also important to know that Collagenous colitis does not increase the risk of colon cancer.
C
@charles, thank you so very much for your through and informative response. A couple of ideas you presented really registered with me such as anti-inflammatory medications and immunosuppressive agents. I have not shared all my story but am thankful this Collagenous colitis does not increase risk for colon cancer. I am eat a diet free of 99% fats, no sugars but still have that one cup of coffee in the AM and yogurt in a smoothy. I have cut out a variety of foods to no avail and believe my significant trigger could be the daily aspirin I am required to take due to other medical issues. I take bulking products daily and they always helped before this issue reared it’s easy head but I continue to take them. Tried the antidiarrheal OTC meds to not avail. It has been a long journey so far but I am now going to follow your advice and find a G.I. doctor who is knowledgeable and willing to help as I am almost restricted to home for fear of having an attack in public. I know others on the site have much worse with far more severe G.I. problems and my heart goes out to them. Thank you again for all your help.
Wish you the best and please let us know what you decide and how well it works?
Best
C