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Tortuous Colon
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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 put me on high dose of Amitiza (as the Fiber and Miralax seem to make my condition worse and are hard to manage with this issue)... and the Amitiza side effects were TERRIBLE. I get off and on again feelings likeI have the flu (aches, pains, chills, hot flashes, headaches, diarrhea etc). I took it as instructed with a meal to not get nauseated which does help... but when ever I finally have a BM I become nauseated before, during and after. I have had to take time off work cause the side effects have been so bad. I did notice the bloating in my stomach is better on Amitiza then on Miralax.. but either way on either one of them I still don't go to the bathroom for a week or two and when I finally do I cant stop going cause its a week or two worth of back up BM. I talked to my dr's nurse today and she said to stop taking the Amitiza and start back on the Miralax for now.

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 which I have scheduled for next month.. 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 show anything she suggested possibly doing a bacteria breath 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 prevents that from happening al together?


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Avatar_f_tn
Hi,
sorry to hear all of the issues with your bowels.  I have diverticulosis and need to take Miralax regularily.
Have you been tested for Celiac disease??  It when your body/digestive sytem goes haywire when wheat products are introduced to it. Even a biscuit will cause problems.
I don't have any suggestions and it sounds like your doctor is willing to find out what is going on. Willing to do tests, etc.  Thats more than my doc.  I have rectal bleeding...continous for 7 days in March...eveidently they don't feel its very important because I can't get in to see a gastro until Sept!  Please feel lucky you have a doc that is concerned for you and your health.
I hope you get this figured out.  Don't wish for surgery unless you absolutely need it.  I can understand just getting rid of the problem...but you don't know what the problem is yet. You could just have an allergy to milk or wheat products. Wouldnt that be awesome if thats all this has been for the last 5 years?
If people had surgery to prevent blockages...no one would have a colon.  Try to be patient...eat bland, non-dairy and non- wheat foods (experiment) and see if any of it makes a difference.
I wish you much luck. Keep us posted on your progress.
Weffette
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1704915_tn?1357604854
Actually I have been tested and done trial and errors on all that stuff already. The first steps when seeing both GI doctors were lets take this and that out of your diet and see what happens. And then lets introduce it back into your diet and see what happens.

As far as dairy I have to stay away from all of it..
For instance ..cheese makes the constipation worse and ice cream causes the gas to be worse. I am able to take lactose pills before eating dairy and it helps digest the food but the constipation is still an issue and cheese when introduced back into my diet turned into a big no no. I now drink and cook with Almond milk.

I also no longer eat red meat as it rots in your stomach and with having the constipation its not good to have it sitting in there for weeks at a time cause I can't go.

The couple of doctors I have been to have told me that the 2 hardest things for a human to digest are red meat and dairy as our bodies were not made to actually have them. They have all told me to remove them from my diet.

From what my doctor says is my colon is VERY toruous and twisted and has a lot more twists and length then a normal person. She said that if I end up with a blockage I will have ER surgery as it can cut off blood flow and can actually kill me. Just wish I could prevent that from happening altogether.

I am scheduled for a barium enema xray tomorrow to check the colon again since my doctor was unable to get through all the twists of my colon during the colonoscopy.
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1704915_tn?1357604854
Yesterday had to be the longest 1 and half hours of my life! It seriously felt like 10 hours!! I was exhausted before I went in because my prep decided to take full force right before bed time. I assume its cause my colon that preps always seem to take longer for me then the average person. So getting up bright and early yesterday was exhausting after going through all that right before bed. The procedure itself was worse. Alot of people say.. oh the prep was worse then the barium enema and getting the xrays. Um it was definitely the other way around for me. First of all the thing they give the enema with is not "small" like they claim it to be. And it has a balloon that expands inside you so that the barium and anything else does not come out during the test. Doesnt feel too good especially after a whole day and night of prep "work" that your already sore from.... and because my colon is very long they filled me up with 3 bags of barium before they could even see anything.The bag is on a drip like an ivy bag is.. and then it goes through this big tube that then goes inside you.... They only had 1 bag ready so I assume that is normal.... well during these 3 bags going into me they had me flipping and the table moving all over the place to get the barium to move through my colon.  At one point the table was flipped to the point I would have been doing a hand stand if I were not on a table with 2 techs holding me down. The doctors kept saying "did you put the barium in yet?" and the techs kept telling them "um yah 1 bags of it" or "um yah thats 2 bags of it...3 bags of it"... apparently 3 bags of barium is not the norm. There were 2 techs (ladies) helping to position me in various positions while 3 doctors behind glass observed the screen and told them how to flip me around and take xray photos. At one point the stopped the barium and and blew air inside me which resulted of course with gas pains beyond any I have ever had. All while flipping me around and moving the table up and down and side to side. Sometimes they had me lay on my back or my stomach. As well as standing me straight up etc. Mind you all this is going on while I still have the barium tube stuck up my you know what.

At the end of it all the doctors left and told the techs to take the tube out to take more xrays without it in......this meant I had to "clench" so nothing would come out.. while they did this. Not really easy to do with 3 things of barium inside you and being on the xray table longer then usual because things didnt go as smoothly as normal. They told me they had to take a couple extra due to how long my colon was.. By the time the last xray was taken I told the tech.. "umm I cant hold it much longer"and I was literally shaking....  and once she gave me the a ok I RAN to the bathroom.

The doctors insisted on seeing the last few xrays that they took without the tube inside me before I was allowed to leave. Not sure why. So I had to sit and wait for the ok to go but then they said I was ok to go eventually.

Yesterday I was so drained and tired I passed out in the early evening and didnt get up till this morning. Today my stomach is very sore as if I had done a million crunches.. still have some cramping from the air they blew inside me and of course the testing. My body is definitely not 100% yet but I am able to eat. Trying not to over do it in that dept though. Made myself a strawberry fiber smoothie today and sticking to things of that nature till I feel better.

One thing I was happy about is before the procedure started the 3 doctors came out and talked to me. They wanted to know exactly what has been going on with me and I told them my story from start to finish. I thought that was important as they were the ones that would be looking at the pictures, screen, xrays etc and could hopefully determine something for me by knowing as much info as I could give them.

It was the worse procedure I have had taken out of all the ones I have had so far. I will take a colonoscopy ANY DAY over this. I am soooooooo glad this one is over I do not wish this on anyone!

No clue on when I hear about results so I figure I will call my GI doctor on Monday just to see when they think they will know anything.
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Avatar_f_tn
I'm sorry you had such a hard time with the procedure.  Have you ever had to give youself an enema before?  If not, that might have contributed to why the procedure made you feel so terrible.  I remember the first time I had to give myself an enema I felt absolutely terrible.  For a while I had to do an enema every moning and after a few weeks it got much easier.

As far as a torturous colon goes, it is actually very very common.  I too have a extremely torturous colon and it most likely contributes to constipation.  However, a torturous colon will not "cause" gas.  It might make it harder for the gas to pass, but it doesn't cause gas.  I would highly highly recommend against surgery for this, even if you find a surgeon that is willing to do it.  It will most likely not solve your problems and it could cause more problems.  Also, large intestine (colon) blockages are rare (small intestine blockages are a lot more common) and even more rare in people who have never had abdominal surgery.  Getting abdominal surgery really increases your risk for developing future blockages because scar tissue develops.

Have you tried taking multiple different laxatives to see if that will help your constipation?  Personally, I take huge doses of docusate, amitiza, and lactulose and I am 99% tube fed which acts as a laxative.  Have you tried milk of magnesia?  I personally think it is the most effective laxative out there (I used to be on it).  Also, how much water do you drink every day?
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1704915_tn?1357604854
Yah I had to give myself enemas for tests I had before.. I believe it was the sigmoidoscopy.. I had to give myself like 4 of them in the morning before my procedure.. it made me so sick I almost threw up.

I was told by my doctor that the tortuous colon causes gas to be trapped in between the food that is sitting in the long twists and turns because it is not moving along like a normal colon is.

I have tried all sorts of laxatives. Right now I am on Miralax as the Amitza made me super sick. So sick I missed a few days of work.

If the tortuous colon is so common then why dont they have something they can do for you. It is miserable to be sick, in pain and bloated to the point you dont want to do anything... even when I can go to the bathroom from laxatives it still takes 1 to even 2 weeks to go.. usually what happens is when I finally do go all those laxatives hit me all at once and then I spend the weekend on the toilet relieving myself of 2 weeks of backed up waste.. my dr said that too is because it takes longer for it all to go through the longer colon that I have. There is no happy medium what so ever.. if I gradually reduce the laxatives my bowels go right back to be rock hard and barely anything.

Nothing seems to work and no one seems to understand how tiring and stressfull this makes a person. It depresses me so much that I am no longer to enjoy the things I use to..

Just the other day my husband mentioned camping and then said "that probably wont be a good idea tho.. cause if we are in the wilderness and you get a stomach ach you will be miserable"

It's rather sad..
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Avatar_f_tn
I have a long tortous colon, 12 feet of it and am having a subtotal abdominal colectomy on Aug 8 2011. They will be taking 8 feet of it.  My doctor said this will fix constipation, bloating, chest pain and puking.  You may want to mention this treatment to your doctor, it may be a little drastic but I would say 5 weeks of discomfort is better than a lifetime of misery.
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1704915_tn?1357604854
I took it upon my self since my gi doctor claims there is nothing they can do for me to see a colon specialist/surgeon and I am so glad that I did.

I am having colon transit xrays done the week of October 18th. Its a serious of 3 xrays to find out if my colon is actually working or if its just twisted. If it is not working properly I might be able to get the surgery your getting!! The doctor told me no colostomy bag and they would attach my small intestine straight to my rectum. The large intestine would be completely removed.

Let me know how your surgery goes!! I am really want to get as much info as I can!!

I have been reading online and although going to the bathroom more frequently will be a consequence of this surgery.. its a heck of alot better then having waste in my body for 2 weeks at a time and feeling like I do.
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1704915_tn?1357604854
Actually I think the surgery I might have is the total abdominal colectomy as he told me the would remove my entire large intestine and not just part of it. The small intestine would then be attached to my rectum and the large intestine would no longer be there.
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1704915_tn?1357604854
My Dr left me a message stating that my xray results came back significantly abnormal but it was as he expected. Which these were to tell him if my colon was working or not. So I assume this told him that it is not. He asked that I make a follow up appointment and to bring my husband with me so we can decide how I want to proceed and go over my options. I assume these will be surgery as that is what he had discussed with me prior to me getting these xrays. I called back and got the nurse so I set up the appointment. She is also going to have the Dr call me back when he is back in.

Any more input on this surgery would be greatly appreciated before I see him on 11/23. I want to have my questions ready for him
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Avatar_f_tn
ng, I hope you will keep us posted on your situation.  I have also been diagnosed with this problem.  This is all new to me so it is kind of scary.  I now feel like I'm 7 months pregnant all the time.  Does anyone know if the start of this can cause severe back pain?  I ended up in the ER about 9 weeks ago with the worst back pain I've ever had.  On a pain chart, it was a 10.  They couldn't figure out what was wrong & it disappeared in 4 weeks.  I wonder if it was a referrral pain from the gut?  JanHuf
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Avatar_f_tn
This sounds alot like what I have, althou I do not have the insurance to to properly chk it out! I was diagnosed with GastroIntestinalitis when I was 12 yrs old. I am 39 now. I would cramp and bloat, and curl up into fetal positions and just cry, because there was really nothing else to do. I can remember the Dr. put me on Tagamet, before it became over the counter. I got sick had a fever went to school and broke out in these little pink under the skin dots every where! They sent me home and then told me the only thing that helped me, I was allergic too. So my Dr. suggested I take mylanta, well after it got to where I was drinking it out of the bottle and going thru two bottles a week , he told me to switch between mylanta and Tums, My body was evidently becoming ammune (immune) to both. After years of doing that I gave up! I would rather just take the pain, eventually it passes but I agree I too go a week or two before going. I also stay away from dairy foods, and spicey things and fruits (most fruit have acids) I however dont know how long my intestines are, I just always thought I was born "put together wrong". Every now and then I can feel the gas moving down, and the pain from an attack is about the same as having a child all natural! I have however found things that help, I have found for me anyway, that heat helps alot! And stress usually causes it to come! I LOVE my heating pad.. I'm not sure why but if i put the heating pad directly on my abdomin (abdomen), it helps it move down and sometimes the pain is harsh but now most of the time it just comes out with little pain. And I drink hot tea. I eat more chicken then any thing else, but i love bacon too lol... steak was never one of my favorites... anyway I'm glad I found this Forum, it helps alot with what to keep staying away from, and that I'm not alone! Thanks so much
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1704915_tn?1357604854
Well I know that the colon transit sitz mark xrays I had are to show if the colon is actually working. I find out the details on 11/23 when I meet with my doctor. We figured out I had the twisted very long colon but the xrays were to tell him if the colon itself was actually functioning the way it should be .. which could have caused the colon to become longer and twisted due to all the constipation. One question I do have for him is what causes your colon to just stop working. I have only been having these issues for the last 5 + years. I am 30 now. I have never had these issues before I hit my mid 20's. The only thing different I can think of that I did mid 20's was start to get mammograms (due to family history) and starting Nutri System.. which I only did for about 6 months.

From what I am reading it sounds like the sitz marker xrays I had is used to diagnose colonic inertia .. which when I looked that up and read about it it sounds alot like the symptoms I am having. I am going to ask the doctor if he does not mention this at my appt if this is what I have.

The surgery for this is a total colectomy.. they would remove my large intestine and then connect my small intestine to my rectum.

If anyone has had this surgery PLEASE leave me your feedback on it!! Thank you.
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1704915_tn?1357604854
Well I have been officially diagnosed with colonic inertia. The xrays show that my stomach and small intestine are working but my large intestine is not.It is slow and sluggish which is causing the constipation and could have been the cause of why my colon is now so long and "loopy".  From the xrays they showed the rings passed through everything then stayed in the large intestine. They could still see atleast 19 rings in the large intestine out of 24 in the 3rd xray.

My options ..

He spoke with my GI dr  (ugh) and she suggested I see a constipation specialist at her facility who has access to drugs not commonly prescribed etc. and might be able to come up with a solution for me instead of surgery. He feels I should see him and pretty much see what he has to say and experiment so to say to see if anything helps me. The thing that upsets me about this option is that my GI dr never once recommended this "constipation specialist" to me over the last couple of years I have been going there and now that I have seeked another opinion outside of their facility they are trying to get me to go back there. I am done going through all these tests. Not to mention the last experimental drug they put me on made me so sick I ended up missing a week of work and even leaving work early cause it made me feel like I had the flu. Laxatives have the same effect on me as they make the colon try to work and just make me sick in the process. Me and my husband both personally do not agree with this option even though the surgeon feels I should give it a shot.

My other option is the total colectomy surgery where they would remove my large intestine and attach my small intestine to my rectum. This would require no bag. And I am a candidate for this surgery because my small intestine is still working. That is another reason he had me do these xrays. Not only to see if my large intestine was working but to also see that the small intestine was working.He did say that a majority of the people who have this surgery live happier lives. He did say it is a major surgery though and that with every major surgery there are complications etc.

He suggests that I see the constipation specialist and if I am not happy have the surgery. I personal am ready to stop having a million tests and pills shoved in my body and just get rid of the problem. My husband strongly agrees with me as I have been going through this for almost 6 years now.

I am gonna think about it all over the long weekend and then make a decision. I am leaning towards surgery.
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1704915_tn?1357604854
Well I went to see the constipation specialist that my GI dr and colon surgeon wanted me to see.

He agreed with me that medication is not the answer to what is wrong with me and I'm to continue only the Miralax, Aciphex and Hyoscyamine. The good thing is he told me that it is safe to start taking my Hyoscyamine daily to prevent stomach cramping/aches instead of taking it when I feel them coming on or when I get them really bad. He told me I can take it up to 2 times a day if I need to. I am happy to hear this as it is the only thing that gives me any relief when I get the massive stomach aches.

However there are 2 more procedures he would like me to have. He wants me to have an Anorectal Manometry and a Defecography. As much as I don't want to go through anymore procedures his reasoning made sense to me and I have agreed to move forward with them. The reason he wants these tests done is to make sure my rectum and pelvic floor are for sure working. Seeing that when I did physical therapy for pelvic floor dysfunction did temporarily help me somewhat he wants to be sure that the rectum is strong enough for the total colectomy surgery (which is removing the large intestine and attaching the small intestine to the rectum with no bag). He said that he has had numerous patients come to him after having this surgery that did not have these tests done prior and regret it.  What can happen is if the large intestine is removed and the small intestine is attached to the rectum but the rectum is not working correctly I could have worse issues then I am having now. He told me with the large intestine no longer there to maintain water and the rectum not working I would be worse off etc. so they have to make sure all is functioning before going in there and removing and reattaching things.  He also told me that if the rectum muscles are not working properly they can actually be the reason I have colonic inertia and the colonic inertia is probably what led to my tortuous colon. He told me that he does feel that I have tried everything that he would have suggested and normally he would not suggest a total colectomy to his patients unless he really feels it should be done and would benefit the patient. He does feel that I am a good candidate for it as long as everything else is functioning the way it should be.

While I was there I had him double check all the blood work and biopsies that I had and he reassured me that celiac is not my issue. I mention this as a lot of people have mentioned this to me and I made sure to ask him if I was tested. He said I was tested for it both ways and that is definitely ruled out. He also apologized for all the testing I have gone through. He feels some of the tests were not neccessary and wishes I had been referred to him sooner as the gi dr I was going to that referred me is a specialist with upper gi issues and not constipation like he is. He told me the sitz maker xray test was definitely important and was one he would have had me do as well so he was happy the colon surgeon issued that for me. He did tell me that the 2 hour empty stomach study (the zombie eggs ha ha) was pointless as they have recently received research showing that unless that test is done for 4 hours it really is not accurate. Ugh! Thank god insurance covered most of that one! He is very up to date and on top of things as a specialist which makes me feel better about seeing him. He is working with my colon surgeon to set up a game plan for me.. and told me he will work with the surgeon as well if surgery is in my future etc.

So my next steps are to get these 2 procedures to make sure everything else is functioning correctly and go from there. Time to get ready for some more doctor bills and preps! Fun Fun!
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Avatar_m_tn
I had previous left-colectomy for severe constipation. My left colon was always loaded and bloated causing discomfort. All tests i.e. colonoscopy, Barium enema, rectal biopsy etc were normal. However no transit study, rectal manometry were conducted before left-hemicolectomy. A repeat barium enema reported 'grossly dilated and redundant sigmoid and descending colon but normal transverse and ascending colon'. Operating surgeon made a mistake and he did not take out whole of sigmoid colon.

My condition improved but I had to strain to defecate for an average 20-25 minutes. I always felt that my rectum was empty.
I went through more tests like rectal manometry, nuclear transit study which showed held up in recto-sigmoid colon. I planned a high-anterior resection with a surgeon in India for removal of 3 inches of remaining segment of sigmoid colon. but this mis-guided doctor out of his wild imagination did a J-pouch rectal anastomosis. He took out part of my healthy rectum and on top of it made a J pouch (15 cm long). Now I am experiencing that my rectum has become redundant (except when stool is watery) and stool is primarily stored in illeal pouch.This gives me a feeling of being constipated and I feel I have to strain to push stool from pouch to rectum.
Can anyone advise me, would it be a wise decision to get rid of this un-necessary  pouch and have an illeo-rectal anastomosis done? I have 14 cm of rectum left.
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Avatar_m_tn
Hi,
I had my 2nd colonoscopy this year, ( the first one the doctor stopped after attempting 3 times because of stool present),  I have a "very tortuous colon" and was just wondering how you made out.  
I was told by my gastro that Miralex is a stool softener not a laxative.  Is that true?  It says laxative right on the bottle.  Also, does anyone know if we can take this every day?  
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Avatar_m_tn
Uh... what happened to her?
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Avatar_f_tn
maralax is a stool softener if your taking a capfil a day.If you want a good laxitive try half bottle or 6 oz, Magnesium Citrate Solution,as i am tring to get help with a twisted colon too,I am gassing and can,t eat down to 95 Lbs, and getting the run around from the Doctors also.I got a Job but can,t start feeling like this everyday! I don,t understand why there is not more help out there for this problem.
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