Anyone else have a Redundant / Tortuous Colon?

I’ve had horrible abdominal pain, bloating, diarrhea, constipation, vomiting and bleeding for years (16 years). I’ve had many colonoscopies, endoscopies, CTs, MRIs - basically you name it I’ve had it done .. 3 colonoscopies over the past 2 years multiple malignant carcinoid tumors were found and removed and I was told “don’t worry it’s a slow growing cancer”. My pain and symptoms never eased so for 16 years dr after dr told me the symptoms were because of cysts on my ovaries because of PCOS and because I was over weight. The gastrointestinal dr last year (I have since changed) neglected to tell me that my CT showed that I had football size masses on both ovaries - so I had a hysterectomy. Still my symptoms didn’t ease. I gave up and decided I just had to live with the pain and try to deal with it - I have extra clothes at work, in my car, in my purse. Fast forward to fall 2018 I begin fainting and losing weight I’ve lost 70lbs in a years. I had my 6th colonoscopy and endoscopy in 3 years last week (my blood work shows my iron, vitamin D, and vitamin B12 levels are depleted) my new gastrointestinal dr couldn’t complete my colonoscopy even though I did a 2 day prep. Endoscopy shows that my esophagus is constantly spasming and the opening to my stomach is small. Even without completing the colonoscopy it showed I have significant inflammatory bowel disease, an extremely “torturous” and spastic colon, severe IBS, and possible Crohns. I’m exhausted from the anemia along with all the colon issues and just being sick all the time. But mostly if drs would have taken the time to listen instead of just judging me as a “curvy” PCOS woman I could’ve gotten help before it got to this point. I don’t know where to turn now.

What are your doctors telling you to do from here? You have a lot to deal with!

I as well have a redundant colon along with adhesions due to multiple abdominal surgeries. Plus I have Pelvic Floor Dysfunction. I am on the Fodmap diet as many others on this site are, however contrary to what most doctors and dietitians say, I avoid all foods that have more than 3 grams of fiber. I used to be a vegetable fanatic. Besides loving them, every Dr said fiber, more fiber and more fiber for the constipation. Fiber, especially insoluble, can't be broken down in your digestive tract. If your colon is twisted as mine is, plus adhesions (adhesions are like glue sticking your intestines together) there is no way for the fibrous food to get through, which ultimately blocks anything else I eat from passing through, causes bloating, pain, and horrible constipation. This goes for corn, popcorn, nuts, and anything with seeds. It just takes one seed or nut to get caught in a loop that is stuck together to cause a complete flare up. I am on Trulance. Trulance is supposed to liquify your stool so it can get pass through. In addition to that I take 2 to 3 caps of Miralax a day. Even with all of these laxatives food in general doesn't get through easily or daily, but fiber is my worst enemy. My bowels are like a yo-yo.

Fiber and more fiber, decrease my stress, get my depression under control (hard to do when you have bowel and bladder inconsistence) and have a med review done - then try to have another colonoscopy (after a multiple day prep) completed. Fiber makes me feel like I’m dying and always has - as a baby my pediatrician told my mom to mix prune and orange juice to get my bowels to move because I was always constipated. If I don’t take stool softeners or use laxatives daily during a constipation flare I can go a month without a BM but I can also have flares where I have diarrhea for months. The last 16 years have a nightmare and I know that I’m a burden now because I’m not able to work some days and knowing things will only get worse from this point is crushing. I’ve had to become my own advocate because the Drs has my family convinced it was all in my head until a few weeks ago when they couldn’t complete the colonoscopy. But that doesn’t help me - they are still playing the “wait and see” and “eat more fiber” games.

I as well have a redundant colon along with adhesions due to multiple abdominal surgeries. Plus I have Pelvic Floor Dysfunction. I am on the Fodmap diet as many others on this site are, however contrary to what most doctors and dietitians say, I avoid all foods that have more than 3 grams of fiber. I used to be a vegetable fanatic. Besides loving them, every Dr said fiber, more fiber and more fiber for the constipation. Fiber, especially insoluble, can't be broken down in your digestive tract. If your colon is twisted as mine is, plus adhesions (adhesions are like glue sticking your intestines together) there is no way for the fibrous food to get through, which ultimately blocks anything else I eat from passing through, causes bloating, pain, and horrible constipation. This goes for corn, popcorn, nuts, and anything with seeds. It just takes one seed or nut to get caught in a loop that is stuck together to cause a complete flare up. I am on Trulance. Trulance is supposed to liquify your stool so it can get pass through. In addition to that I take 2 to 3 caps of Miralax a day. Even with all of these laxatives food in general doesn't get through easily or daily, but fiber is my worst enemy. My bowels are like a yo-yo.

Fiber and more fiber, decrease my stress, get my depression under control (hard to do when you have bowel and bladder inconsistence) and have a med review done - then try to have another colonoscopy (after a multiple day prep) completed. Fiber makes me feel like I’m dying and always has - as a baby my pediatrician told my mom to mix prune and orange juice to get my bowels to move because I was always constipated. If I don’t take stool softeners or use laxatives daily during a constipation flare I can go a month without a BM but I can also have flares where I have diarrhea for months. The last 16 years have a nightmare and I know that I’m a burden now because I’m not able to work some days and knowing things will only get worse from this point is crushing. I’ve had to become my own advocate because the Drs has my family convinced it was all in my head until a few weeks ago when they couldn’t complete the colonoscopy. But that doesn’t help me - they are still playing the “wait and see” and “eat more fiber” games.

I completely understand where you’re coming from. People sometimes thinking you’re exaggerating or looking at you like you’re crazy. My sister, even though she’s seen me at my worst on several occasions still constantly says things like, “well you say you can’t eat this because it gets you sick”, or “it makes no sense. You can eat this but not that”. And some of the doctors are worse.

It’s hard when it’s your “people” that doubt you and when the drs justify those doubts it isolates us and makes us feel even more alone and depressed. My mom is my best friend but if I’ve heard it once I’ve it a million times over the past 16 years “I think it’s nerves” or “stress” or “your meds” or “you just don’t eat right” and this last colonoscopy kinda sealed that thought for her when the dr said I need to work on my “emotions & stress plus have a med review”. Then I sent her info and research and a drawing of what our colons look like - Now she understands why I have pain all the time but I can still hear the disappointment in her voice when I can’t make it to work because of the diarrhea or the debilitating pain. I don’t want to be a burden but I know that I am.

Even though you feel like a burden to your mom, as I feel I am with my family and friends (especially my husband) too, they keep reminding me that they help and take care of me because that is what families and friends do. I feel tremendous guilt at times as well, but I try to remind myself that if it were the other way around I would do whatever it takes to be there for my family as well. Feeling guilt is a useless emotion. None of us are intentionally being sick or seeking attention.

People also tend to give advice or say stupid things like it's stress because they want to help and they don't know what else to say. I know they think these comments will make us feel better, when in fact it has the opposite effect. I have become very out spoken lately and started telling people that when Im not feeling well, and I tell you about my issues of the day, I'm just venting. I add that i'm not looking for an answer or advice. If I'm not asking for help I really don't want it. I just want you to listen and not say anything because there's nothing to say. A simple i'm sorry you're going through this is all that needs to be said. I have found this to be a tremendous help, especially with my mother. I have to remind her often that I just want her to listen and not give advice, but being straight forward has helped a lot. I don't know your relationship, but it's worth a shot for you to speak up that it bothers you when she's says things like it's stress.