No longer have a life!

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I have now had diarreah and pain in rectum for 19 months. Both started at same time. Diarreah is always like water and going 6-12 times a day. Occasionally, it has happened during the night. I have no control over it at all and have many mishaps. A lot of times, it starts within 30 minutes of eating anything and at other times, haven't eaten at all. Have been seeing GI doc during this time and still no answers. During this time, I have had 2 periods of time without diarreah, once for 5 weeks and once for 2 months. My 2 months of being diarreah free, ended 2 weeks ago. Doesn't matter what I eat or whether I eat or not. I have no appetite and literally go for days without food, because it's so hard to eat, when you never get hungry for anything. I suffer greatly from fatigue every day. I also have Lupus, so I do expect the fatigue, but usually just bad when it flares up. Now, it's a daily issue. I have lost a total of 26 lbs since this started. Will gain a few pounds back and then lose it quickly when having diarreah daily. This week, had to visit ER because of irregular heartbeat, due to potassium and magnesium deficiency. Then since yesterday, have been having severe pain in lower right side. Have had a colonoscopy and endoscopy, amoung other degrading tests for the rectal pain. Had 7 polyps, 2 quite large and others small. Doctor mentioned Crohns once and never said whether I have it or not. Had gallbladder out in February, because of large gallstones, didn't affect diarreah problem. I am literally going insane. My family doctor is sending me to Duke to the digestive disease clinic. Waiting on that appointment now. Also, my lupus has been great since all this started, so haven't been on prednisone during this time. Does this sound like Crohns and are there other ways to check for it? Any ideas, advice, or any help you have to offer is greatly appreciated.

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  • Posted

    Sounds virtually identical to my situation before being diagnosed with disseminated Crohn's Disease. Usually, diagnosis requires a gastroenterologist to perform a gastroenteroscopy and a colonoscopy to effectively diagnose Crohn's Disease, and the portion of your digestive tract that is affected. From there your gastroenterologist will put you through what he or she deems best for you.

    I suffer from a very severe case of disseminated Crohn's Disease. Typically, 1 - 2 inches of the digestive tract is affected by the disease however in my case, my entire digestive system is affected. Reading how severe yours is, you might have a similar case. Being 19 years old and having Crohn's for over a year now, the only advice I can give you is that everyone with Crohn's is different, and you have to learn you limits. If you suspect a flare, put off your plans and reschedule. You'll soon learn about certain foods you cannot eat, like I for example cannot eat nuts or I'll find myself on the toilet for a day.

    If you would like any more detail I'd be happy to help, like immunotherapy for example

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    • Posted

      Thank you for replying. Since, I have lupus, have taken Imuran, methotrexate, etc. Suffered some liver problems an wound up in hospital and haven't been able to take since then.

      I am going crazy with this. Other than when my lupus flared up, I usually felt great. I probably have not had diarreah 5 times in my whole life, before the last 19 months. It's like a faucet! Also have a lot of gas, which has never been a problem and sometimes, I think I have to go, ( always feels that way), it is gas and mucus. Have had bloody diarreah with this too, but not always. I have mouth sores, but also a symptom of lupus. Just feel so miserable, no energy and get so tired, I can take 4 hour naps and still sleep all night. I can take Immodium and have Cholesytramine, but I sure would like some answers.

      We have eliminated foods, kept a food diary, increased fiber, decreased fiber, gluten free, no dairy, etc., and nothing had made a difference. Had to have a pelvic prolaspe surgery in June and the nurse wanted me to eat some saltine crackers before taking pain meds. Ate 2 crackers and diarreah started within 15-20 minutes. I had an epidural, therefore didn't know it until it was all over me and the bed. Had to stay there 4 hours extra. Needless to say, I literally cannot leave my house without taking Immodium, which doesn't always work, and I still feel miserable.

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    • Posted

      Sorry to hear it's been so tough. A colonoscopy and endoscopy (assuming you've had both) will not cover 100% of digestive system. A capsule endoscopy is used to check the bits inbetween. Also an MRI is used to check beyond the internal intestinal lining e.g thickening of intestinal wall. CT scans are also used to check for other digestive issues.

      A faecal calprotectin test and blood marker tests are often the starting point to indicate IBD. It may be inflammation markers show up in just one and not both. Have you had such tests? They'd heavily suggest IBD with the various imaging tests better informing from there on.

      I've heard it's often the case that sufferers of auto immune diseases can end up with more than one. Is it possible that where your medicine for lupus is changed, increased, decreased that your possible IBD flares up?

      There's also the possibility that it's flare ups then remission without any medicinal consideration....IBD can be quite fickle and may not make much sense when reviewing why you can go from good to bad then back again with little reason. Matt.

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  • Posted

    Hi, it sounds like crohn's flare up, l suggest getting a stool sample and a scope up back passage, see consultant. I know the symtoms, I ended u getting emerancey operation 9 years ago, I have permanet ilestomy stoma,

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  • Posted

    Hi. so sorry to hear your story.  i was going to suggest you may have bile acid malabsorption, but as you already take colestyramine that rules that out really as that med is the treatment for it(i have it & am on it). your story points more towards crohns.  i would like to tell you though that colestyramine sachets have to be taken either 1 hour AFTER all other meds/vits and 4hrs BEFORE all other meds/vits as it can "hold" other meds in your system otherwise. its very important & many people on it aren't told this when they start it. also i dont know how many sachets you are taking, but often twice daily dosing can do the trick after a week to ten days. eg take 2 in the morning & 2 at night (following the time constraints i mentioned with other meds). its worth a try while you wait for your appointment. x

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