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Anyone else have a Redundant / Tortuous Colon?
Digestive Health | Last Active: 21 hours ago | Replies (1116)Comment receiving replies
Well, I am so disappointed and frustrated. I waited months for the apt with the new gi motility specialist on Friday. I even sent a two-page synopsis ahead of my apt detailing my history, my recent struggles with managing my constipation meds and what I hoped to achieve with my apt. with her. It was an almost 4 hour drive. I was hopeful at first as she was nice, not arrogant as some, but not long before my frustration started. I also have had chronic, almost daily migraines, for nearly 30 years, and she quickly jumped on that. I am well aware of the brain-gut connection and my neurologist and I have spoken of it often. Also the role serotonin plays. But, in 30 years I have also tried and failed virtually every migraine drug and treatment there is. So, she says she doesn’t think my bowels will get better until my head does and visa-versa, all tied together. My nervous system is on overdrive. So what do I want from her, she asks? I want to know what to take and how to take it so I can poop regularly and what to do when everything stops and I just cannot go at all and how to recognize if X-ray or something is needed? Nothing. I asked same questions three different times, becoming more and more agitated as I wasn’t getting any answers. So, she does exam and tells me I have very rapid heart rate! Also, abdomen is really tender. Ya, because I’m hardly pooping! Gets beeped that her next patient has arrived so she has to wrap things up. So, I ask again. Finally says that she thinks previous dr has me on good meds, nothing new she can suggest from that end. As far as when I feel like I’m all backed-up, am I really or am I just perceiving it to be that way? How do you just perceive that you’re not pooping? She feels the real key is getting my migraines better. At this point I want to ask if she has a magic wand but I restrain
myself. So, the one thing she offers up is citalopram which she thinks could calm down my over-active nervous system. When I bring up severely tortuous colon. She says she saw that in records. She also referred me to a cognitive behavioral therapist who she thinks could be very helpful. First apt is in Sept! So, I left with pretty much nothing. Actually less, because I now have no one. My previous doctor has turned me over to her so I can’t call him as they’re all part of the same system. When things just stop moving, he will usually order an X-ray and then something strong to clean things out. She didn’t appear to even believe me about that. To even find someone else and get an apt will take months to get in and I have no idea who to even go to. I literally just cried myself to sleep last night.
Replies to "Well, I am so disappointed and frustrated. I waited months for the apt with the new..."
OMG! You are experiencing the same as me…I’ve been on Mayo for SOME time. I’ve seen at least 6 different GI’s. After 5? colonoscopies…the 1st one in2010, the only thing they say is “long tortuous colon w/ diverticulosis.
I’m 5’2”, my normal weight is 130 - 135. I weighed 170 when it was at its worst. Luckily, I got in touch with a GI Dr. I’d never seen. He prescribed me “SurePrep”…it’s what they give to clean you out b4 scopes. It worked, sorta, I had 2 blowouts. The pain in my SWOLLEN gut was unbearable. But that was the beginning…I know this may seem off topic, but I had a metal hip for 16 yrs. 1 day I woke up & all I can say is I was “out of it”. My hip hurt, so I laid back down. I didn’t come out of whatever you wanna call it for over a week..(I have no recollection of what happened during that time). I was in bed, I have 2 kids to get up, get fed, & take to school. When I came to, I went straight to orthopedic dr. & he tested for metal ions…of course I had plenty. Had revision, pain subsided & got back to 130 lb. That was in 2020..pain is back, I only eat soft food & all GI’s say same, tortuous colon & diverticulosis…in fact, a month ago I went to a NEW GI, I had previous reports & scopes. He flipped thru them & said “well, it looks like you have done everything there is to do, I can’t help you”. He gave me amitriptyline 10 mg. Sometimes it helps sometimes it doesn’t but I’ve been on a soft diet for 4 years !
I’ve cried myself (in my room, alone) so many times. I wish I could just go hospice. I hope you have better luck than me. ALSO, make sure you don’t go to the colonoscopy places…they’re everywhere, & that is Literally all they do.
Prayers & best wishes
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I completely understand your frustration, mostly because we are in the same boat with the redundant colon. I also have a side order of Crohn's disease, which makes things interesting. I too have had experience with certain "expert" doctors who don't seem to have a clue, sometimes the one we've waited the longest to see. It's especially infuriating when they treat you like you don't know what your own body is telling you, isn't it ? Many of us have had that same experience, and It's easy to feel like we've somehow slipped through the cracks of the medical system. There are many days that I feel like I am treating myself with the help of Dr. Google and an occasional tele-med visit with my GI doctor, who is in another city. He's pretty good, but he doesn't have all the answers either. I wish I had some words of wisdom for you other than "hang in there" or "thoughts and prayers" and that kind of stuff. I will say that I have learned a lot from forums such as this one. Some of it worked for me and some of it didn't. But it's hard to separate the good from the not so good. So I keep plugging away. My current strategy is a combination of things I've learned from other people, along with an Rx from my GI doc. Mostly it works, but it seems like I'm always tweaking it. Don't give up. And don't give up on finding the right doctor for you. There are some out there.......