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Old 11-01-2008, 06:36 PM   #1
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hopetofeelwell1 HB User
New diagnosis: Tortuous colon?

Hi all! I had the colonoscopy yesterday from hell and although I hated the prep kit, it was better than the procedure! I was given 175 mg. of Fentanyl instead of Versed because I had a paradoxical reaction(opposite) to it previously and I became combative and manic during the previous procedures. The Fentanyl took a little of the edge off, but after being injected with gas, which hurt like heck, the doctor proceded with the scope and I almost jumped off the table because of the pain! It took two endoscopic nurses to hold my hands and one to help hold my feet down because I was shaking so badly. I just cannot take these procedures awake and in five years I will do this completely knocked out. Anyway, the reason for all the pain is what is called a "tortuous colon", which evidently means a colon that is long and twisted. I have read that this can happen because of anatomical problems, but I also feel that this can happen because of pelvic and bowel adhesions from previous surgery. Anybody-- please tell me if I'm wrong on my feelings. I was also rediagnosed with sigmoid diverticulosis and irritable bowel syndrome, which I know I have had flare ups from recently due to prolonged stress. I am now looking forward soon to having an endoscopy with another 4 liters of PEG 3350 prep kit--oh lucky me! Is there anyone out there who has also been diagnosed with a problem colon like this and has any stories to share? I would love to swop war stories. Ah to turn 52--diagnosed with arthritis and bowel trouble all in one week! LOL Thanks so much--Hopeto--

 
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Old 01-13-2009, 01:20 PM   #2
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belkel HB User
Re: New diagnosis: Tortuous colon?

I have recently been diagnosed with a Tortuous colon too. I am only 29 and have been suffering for about a year with it. Have you found any relief at all for this? I have not. Please let me know what you have found out about the tortuous colon as I have not been able to find any information on it. Thanks!

 
Old 01-13-2009, 04:09 PM   #3
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mysixpack HB User
Re: New diagnosis: Tortuous colon?

I had this same diagnosis when I had my colonoscopy done. They said I also had several hymriods?? -which I wish they would have taken care of. I came over to this group after posting in Anemia. I have had severe pain in my stomach and down by my ovaries. Also, I look pregnant without being pregnant. Very weird! Maybe it was meant for me to see your thread. I forgot about that diagnosis. I remember when he came in and told me that-I thought it sounded horrible. He acted as if it was no big deal!

 
Old 01-13-2009, 04:50 PM   #4
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Kinselmom HB User
Re: New diagnosis: Tortuous colon?

I have chronic diverticulitis and my most recent colonoscopy was also a nightmare because of a severely tortuous colon. I almost came off the table when they introduced the gas and it took double the amount of medication to get me under again. My Gastro explained to me that the torsion is from the thickening of the bowel and scar tissue from all the infections I have had. I have now had 8 episodes of diverticulitis since last May and am trying to get medical clearance so I can have a sigmoid colectomy. Some Cardiac issues have shown up that need to be checked out before they will allow me to have the surgery. She explained that the torsion significantly increases the possibility of having an obstruction. She most certainly did NOT act as tho it was 'no big deal'! From my understanding, the only treatment for this is surgery.

Sixpack, I thought my problem was an inflamed ovary for almost a year. The pain seemed to be in the exact spot where my left ovary is and for some reason my diverticulitis recurs about every 4-5 weeks regularly! It wasn't until I had a severe episode that I got an accurate diagnosis!

Hopeto, I am now 54 and am realizing why they say "Getting old is not for the feint hearted!" This is no fun and I am really hoping to get the clearance for surgery before the diverticulitis blows up in my face! (well, not exactly my FACE, but you know what I mean!) I was scheduled for the surgery on Jan 7th but it was postponed when some irregularities showed up on my EKG during my clearance physical. Now I am scheduled for a nuclear stress test on Thursday to find out just what is going on there. Hopefully nothing that will make them decide that the surgery is not possible because I don't know how much longer I can keep on having these infections every month!!

 
Old 01-13-2009, 09:20 PM   #5
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Chantal231 HB User
Re: New diagnosis: Tortuous colon?

Hi,

I too have a redundant colon, extra long and twisted. It was diagnosed on a barium scan many years ago.

I'm scheduled for a colonoscopy on the 21st and don't know if I can go throught with it. I'm terrified the Dr. will perforate my colon because of the twists and turns.

I am going to have an anesthesologist present and will be knocked out (propofol), so I don't expect to feel anything but I'm still scared.

I also have IBS.

Chantal

Edited to add: I was told that a redundant colon can be inherited and that it does not need treatment unless it poses a problem. By the way, I'm 53.

Last edited by Chantal231; 01-13-2009 at 09:22 PM. Reason: addition

 
Old 01-14-2009, 10:33 AM   #6
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belkel HB User
Re: New diagnosis: Tortuous colon?

Thanks for all the posts...

mysixpack,

My doc also acted as though it was no big deal. Weird!! Maybe it isn't any big deal until it becomes twisted so bad that you do need surgery! I hope and pray that will never be the case for everyone that has this same problem. I too look as if I am pregnant and am constantly bloated! I have lost a lot of weight but I feel as though I am overweight still, due to my stomach area being bloated all the time! It absolutely drives me crazy but I guess there could be worse things to deal with. I try to drink a lot of water and eat more fiber but I still have horendous pains and bloating. Some nights, while I am lying in bed, I can actually feel my colon twisting and it causes so much pain that I just want to through up! Those are on the days when I don't drink enough water. So I really try to drink as much as I can and I feel it helps most days. :0)

kinselmom,

Thanks for your input. the articles that I have found mentions surgery too and I do recall something about my doc saying they can remove part of the colon if it becomes to long but didn't really recommend it until things got worse. I also "came to" during the colonoscopy and it was not a very good thing! I remember it and asking them to hurry up and give me more of the drug so I couldn't remember feeling it but that was aweful! It hurt like crazy and the doc performing the procedure just kept right on going!!!! I feel for the people that don't have anything while getting a colonoscopy! Good luck to you when you have your surgery.

Chantal231,

Thanks for your imput also. I have read that this can be inherited. I don't know of anyone in my family to have this problem. Although, I do have a lot of history in my family with other colon problems, IBS, Celiac Disease, Diverticulitis.... So I suppose it could be inherited. I also read it could be from a diet. I don't understand this as I have not found a lot of information on this. Is it from a poor diet, from just dieting alone, from not dieting right??? From not getting proper nutrition? I have no idea what they mean by that. I guess I will just believe it is inherited. I also read this happens after you have children too. I have two children but I don't think the experts could actually say this is what caused it. But you never know I guess! I guess I will just go on and do what I have been doing and not worry about it until it becomes worse...and I will pray to God in the meantime that will never become the case. :0) Good luck with your surgery too.

 
Old 07-07-2009, 11:53 AM   #7
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Mareva HB User
Re: New diagnosis: Tortuous colon?

I was just diagnosed with a 'tortuous colon' yesterday. I am 29 yrs.old and have no children or previous history of stomach/digestion problem(s).I agree that it is a direct result from my pelvic surgery (only surgery I have ever had ) in 2007.It started with internal hemmoroids that wouldn't go away.I got the colonoscopy two days ago.
They also found a 'diverticula' in the ascending colon.
I'm trying to research as much as I can but I feel your frustration hopetofeelwell1.

 
Old 05-20-2011, 10:37 AM   #8
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ng1031 HB User
Angry Re: New diagnosis: Tortuous colon?

I am 30 years old and have been suffering with GI problems for the last 5 years. They consist of gas, TERRIBLE gas pains, bloating (to the point I dont fit in my clothes and look pregnant), stomach aches, unable to eat dairy or meat (cause it adds to the gas and digestive issues), girggling/trapped air in my chest, chest pains and the worst of them all.. constipation!!

I have had many tests done on me.. to find out the following so far..

1.) Sigmoidoscopy = hemmrhoids internal due to straining, some irritation and redness but biopsies say no cancer
2.) Upper scope = some irritation and redness but biopsies say no cancer
3.) Mannometry = lower esophagus is weak causing the trapped air and pains (taking Aciphex and Gas X for this, avoiding gas causing/acid causing foods)
4.) Empty Stomach Study = stomach is emptying into my bowl a little slower then avergage but still in the normal range
5.) Physical Therapy for pelvic floor dysfunction = possible issue with relaxing my muscles in order to go to the bathroom but therapy did not help my issues go away. Still not the cause of constipation but could be caused by it.
5.) Colonoscopy = torturous colon.. my GI dr was not able to complete the whole thing.. she got to my ascending colon and had to stop. She says surgery is not needed unless there was a knot or blockage but this definitely is why I am experiencing gas, upset stomach and bloating. It can also contribute to my constipation but she believes that my constipation for 5 years is what caused the torturous colon because I did not start experiencing these issues until 5 years ago. She is putting my on high dose of Amitiza (as the Fiber and Miralax seem to make my condition worse and are hard to manage with this issue)...

Now my thing is ok we know what the constipation is causing and doing to my body.. which now this torturous colon is a whole new thing to add to the list.. but......... why is the constipation happening to begin with???

She said she wants me to have a barium test xray to double check the parts of the colon she was not able to see in the colonoscopy to make sure there are no blockages etc. And then if that does not work and the amitiza does not help she wants me to have a bacteria test of some sorts.. where you breath in this bag thing and they can see if they should put you on antibiotics for gut bacteria to regulate you.

5 years of my stomach running my life and I feel every road is a dead end.

Does anyone know the real reasons as to why surgery is not an option for a torturous colon?? It seems its only an option if you have a emergency knot or blockage that forms?? Why not have a surgery that provents that from happening al together?

Last edited by ng1031; 05-20-2011 at 10:38 AM.

 
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Old 07-27-2011, 10:55 PM   #9
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Janeyoctopus HB User
Re: New diagnosis: Tortuous colon?

Hi there, I was so lucky that my doctor decided to use a childs size tube for my colonoscopy. After having 4 in a year, the last being quite painful for a few days because of trying to get around all the bends, was the only one that ached after. They said I had the longest colonoscopy on record of the place. I have to appreciate the doctor for continuing.The child scope, my 5th colonoscopy (4 years later) made it a breeze. I just cannot tolerate that stuff to drink. My doctor tells me there is something new but expensive. Last time he said that, it was pills and only $50. However they found these could damage the kidneys. They were a breeze, I almost found ways to make it all easy. I will pay anything rather then drink that stuff again. I thought he was going to say a thousand dollars and I was prepared to say ok. Stay hydrated.
I had hemrrhoids, polyps, one had to be repaired, and a tortuous colon, many loops and sharp angles. Sometimes I cant go no matter what, I have tried almost everything and dont want to be depended on ducolax which has been a life saver. I also found out the best thing to do is take a ducolax a couple days before the prep. I was able to only make a few trips to the bathroom and slept well. I felt so much better then the other 4 colonscopies. I woke up during the second one, so it was canceled. The third went perfect and they removed the polyp. In one year things had gotten so much worse that it took 2 hours and 45 minutes to do my colonoscopy. Last time with the child scope, it took 35 minutes and that was removing and repairing 2 polyps. I had a hysterectomy, a gall bladder removal the less invasive way but the doctor goofed and sewed my intestines together in my insision and they stayed that way for ten days. Im pretty sure why I have so many adhesions, and no they wont cut them for fear of more growing back and worse. I wake up in the morning pouring sweat while my intestines are trying to push. Im not sure if I can work anymore since when I do go to the bathroom it can take three hours. Youd think someone would come up with a way to stop scar tissue from growing. My fear is someday having to use a bag, sometimes even now, I wonder if it would make life simpler. Im trying Myrlax now. Got my fingers crossed. I also have fibromyalgia and have had to cut way back on my pain meds. Remember suggest the childs scope if you want a complete colonoscopy and have a tortuous colon! Best of Luck.

 
Old 09-16-2011, 04:04 PM   #10
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tazmomo HB User
Re: New diagnosis: Tortuous colon?

I hope you have a good doctor second doctor would"nt hurt
best of luck

 
Old 09-17-2011, 03:01 PM   #11
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ng1031 HB User
Re: New diagnosis: Tortuous colon?

I finally decided to take it upon myself to take the next step and quit having more and more tests on me with my current doctor. A friend of mine had an Uncle with similiar issue who saw this colon specialist who performed surgery on him and he is doing great. I have an appointment with him on Thursday. Fingers crossed.

 
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