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Anyone else have a Redundant / Tortuous Colon?
Digestive Health | Last Active: 2 hours ago | Replies (1117)Comment receiving replies
I know I'm late to the game here, I just found this site. As I'm reading through these posts I'm lying flat on my back in bed, dying, my pain is so horrendous. This is a three-day stint which is not unusual. Sitting is always uncomfortable for me . When I drive my seat is leaned way back. Wearing jeans or, anything around my waist will eventually lead to Pain by the end of the day. Bending over forwards, nope! I am otherwise a healthy, very active , mother of five , ages 40 to 22 years old, grandmother of five! 59 years old and for my whole life of emergency room visits for abdominal pain, I was never diagnosed until last year with a redundant intestine. This, was after I went to the emergency room and was hospitalized immediately. Nothing they gave me for pain helped. They say, narcotics do not e a s e the pain for this condition. Of course, the doctor recommended a colonoscopy but, he said, you just had one last year and it was inconclusive because they said that you were not cleaned out enough. I promised him that I did everything exactly how I was supposed to do on my last colonoscopy. He suggested, that I did two cleanings right in a row! I had to agree with him, I needed to find out what was going on with my stomach! I will say this without sounding disgusting, I could not believe how much waste was in my stomach!! Two nights in a row! Psychologically, if you suffer this pain and discomfort, and bloating, it can wear on you. Really, wear on you. I have found that being grateful for the littlest of things in my life, the beauty of nature, trying to stay in touch with my grandchildren via FaceTime , it's hard to put on a happy face with them when I'm having an episode. Currently, I have no insurance. I live in Florida. The doctor in the hospital recommended I follow up with the doctor who did they colonoscopy so I called the office to set up an appointment, I knew I would be paying cash I figured probably in the hundred dollar area. The woman was very Curt when she let me know that the initial visit fee was $275 no it's ands or buts about it, no payment plan no nothing. So, my life continues with my general practitioner trying to figure things out. My general practitioner, I might add, is a different doctor every time I go there so, there is no relationship building, no ongoing, effective, communication. I have to tell my story over, and over, and over again. One of the doctors who, I happened to see many times, and once after I was hospitalized with a severe attack, said the first colonoscopy was inconclusive. He was thoroughly convinced that my whole problem was constipation nothing more. I stood my ground, I know my body, I told him there is something in there that is not right. Wow, I know I've rambled, nobody understands what I'm going through or the severity of the pain and how it just overwhelms your whole mind and being. This too shall pass. I am, on my good days, a very upbeat, happy, funny, loving human being. I feel very alone in this struggle... I just want this never-ending pain to leave me. Well, if you took the time to read this far, thank you!
Replies to "I know I'm late to the game here, I just found this site. As I'm reading..."
@tll5, You've come to the right place! Believe me, on this MayoClinicConnect site, we all understand and know what you're going through. All the pain, the lack of diagnoses, doctors that don't want to hear what you're trying to explain to them. Been there, done that. I'm so very sorry for all this trouble you're having. I'm so grateful I live in Canada, where all our medical services are free - doctor and specialist appointments, colonoscopy, CT, MRI, everything. I wish I had a magic wand to help you. We're all here to support you. Warm regards, Laurie
Just so you know, you are not alone! It's a fight. I too was told I have a redundant, fixed, ridged colon on my last colonoscopy. I've had a few in the past and it was never mentioned. From what I've learned is that constipation over a long period of time (for me since I was 13, now I'm 71!) The "backed up" stool causes the colon to lengthen to accommodate. I almost never wear jeans...it's yoga pants or sweats. The only jeans I can wear have to be very stretchy. Anyway.... getting to the pain. To relieve the pain you must be able to go. When your having episodes try a heating pad or a hot bath. Massage your lower abdomen gently in a clock wise motion, while laying on your left side. It can help to pass gas. I'm assuming your unable to do that. Water is VERY important. I'm drinking between 50-65 oz. a day and I only weigh 104. You pee a lot, but you need to get that stool soft. Has anyone every mentioned stool softeners? Try 2 every night before bed with a glass of water. They are across the counter and very inexpensive. Doctors tend to tell you to increase fiber. But for us getting that fiber through a long colon is almost impossible. So you may want to give your colon a rest and eat a low fiber diet for a week or 2. Doctors also tend to recommend laxatives. Never worked for me, only made my pain worse and lasted all day. Lately, I am trying 1 - 500mg of Magnesium oxide with my stool softeners every night. While not perfect, I am able to go almost every morning and it's not raisins or at best chicken nuggets either. I still have bloating and some gas most days but it's better than laying in bed in pain. Walking also helps. Try walking a mile or two outside everyday. At least your in FL. so that helps. I'm in WI so I bought a treadmill this winter. I've been lucky to have a gastroenterologist and a nutritionist I'm working with. I've been told the only way back to normality is to have a surgery to shorten the colon. Not something I want to do! So I'm giving some natural remedies a try first. Besides, who knows what the surgery will turn out like? No guaranties in this. I do not want to spend the rest of my life in this condition, as I'm sure you don't either! So anyway, I hope you find some relief. There are a lot of folks out here with the same condition and everyone has something that is working (at least somewhat) for them or they will report what is not working. I know some of this is not what you wanted to hear but it's where we are at. I hope you have some better "gut" days. Sherrie
I know EXACTLY what you’re going through, I’ve been putting up w/ it for 7 (at least) years.!
I actually saw a new GI, because I had a 4 day episode a couple weeks ago (I thought they were over). On my 1st. visit, I brought some records of previous procedures ….he thumbed thru them, said “there’s nothing else I can do”) gave me amitriptyline & said come back in a month.
This is not my 1st rodeo.
I can’t remember when exactly I was diagnosed with “long, redundant tortuous colon”, but I guess it never goes away…
😩
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Please know that I do understand. Your story could be mine! I am 72 yrs old and have suffered with the pain you are describing for over 20 years. I've had numerous scans, colonoscopies, ER visits, and hospitalizations and still no answers. Doctors just blame it on being constipated which I do suffer from, but, why am I so constipated when I do everything to avoid that......eating fruits, vegetables, exercise daily, and drink a ton of water, etc. I have also tried acupuncture, hypnosis, and pelvic floor PT. My last appointment with the gastroenterologist resulted in her saying she just doesn't know what to do for me but did suggest that this could be scar tissue around my colon. She said there really isn't a scan that detects that well and I'd need to undergo exploratory surgery to find it. According to the doc, removing the scar tissue and the cutting for the surgery would just cause more scar tissue down the road so it really is a catch 22. I am working hard now on trying to find some answers on my own by trying any suggestions I find on this site and a few other sites. I have experienced several days now free of excruciating pain by taking Atrantil and Triphala daily. I don't know if this will be a long-term solution or not, but, I will take what I can get for now. I want to feel comfortable traveling, plan things with my kids and grandkids, just meeting up with friends without worrying about being in pain and needing to cancel my plans. Feel free to reach out to me if for nothing else than to know you are not alone!