Colonic Inertia with Tortuous Colon - Is surgery my best option?

[ng1031]

I am 30 years old and have been suffering with GI problems for the last 6 years. They consists of terrible gas stomach aches, bloating (to the point I dont fit in my clothes and look pregnant), girggling/trapped air in my chest, chest pains and the worst of them all.. severe constipation (don't go for 2 weeks and when I do its rock hard and barely anything). I have seen 4 different doctors getting various opinions that range from a regular dr who put me on Amitiza low dose and when that didnt work recommended me to see a gi dr. That GI dr told me "oh its just IBS..nothing we can do for you." Then I went to the city to see a dr at a well known university hospital and they ran a million and one tests on me...........

1.) Sigmoidoscopy Result = 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 in a normal range

5.) Physical Therapy for pelvic floor dysfunction = not the cause of constipation. When this did not work I begged my gi dr to do a colonoscopy to set my mind at ease.

6.) Colonoscopy = they found I have a very long and very 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 (pretty much on my death bed) but this definitely is why I am experiencing gas, upset stomach and bloating. I begged her to give me something for some relief now that she knew this was the cause. She took me off of Miralax and put me on a high dose of Amitiza. This time I didnt stop taking it because it didnt do anything but because it made me VERY sick. I missed more work because the side effects made me feel as though I had the flu (aches, pains, chills, hot flashes, headaches). 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 still didn't go to the bathroom for a week or two so the side effects were not worth the results. I was then taken off of of it and put back on Miralax.

7.) Barium enema xray =  because my colon is so long and loopy they had to fill me up with 3 bags of barium instead of 1 and had to flip me upside down for quite a long time to even get the test going. The results showed the same thing as the colonoscopy. Longest 2 hours of my life. Worse procedure EVER!

At this point the GI dr told me there was really nothing they could do for me but continue running more tests to eliminate other things. She continued to tell me that surgery was not an option even though my colon was so long, loopy and making my life miserable. I took it upon myself at this point to see the colon surgeon to see what he had to tell me etc as I kept reading and hearing about colectomy surgeries. The surgeon looked over all my files from all my various drs....

8.) Sitz Marker Xray = I have colonic inertia. My stomach and small intestine are working but my large intestine is not. I actually went to a colon surgeon after not getting any treatments answers from my GI dr.

My question is what can really be done for colonic inertia with a tortuous very long colon. The colon surgeon called and spoke with my GI dr whom I was trying not to go back to as I was done with getting no answers from her. He gave me the option to see a constipation specialist that she recommended at the hospital I had all the tests done at. Which I find funny that until now that I go and get another opinion then she recommends this specialist. She never once mentioned this specialist to me in all the times I saw her. She told him that this specialist could give me drugs not available to most doctors and try more tests instead of surgery. I really am not interested in experimental medications.. does anyone have any idea what he could possibly prescribe to me that hasnt already been tried? Amitiza and laxatives make me soooo sick. And I honestly dont see what else he can do for me?

My other option is to have a total colectomy surgery where my small intestine is attached to my rectum. Since my stomach and small intestine are working properly and its my large intestine giving me the issues.

I personally do not want to be a experiment for new drugs and I am done with having any more tests done on me (not to mention the dr bills) just for nothing to work for me and just for me to end up having the surgery after trying all that stuff anyways. I am highly considering the surgery.

I have spent a majority of my 20's being tested, medicated and my life being ran by how my stomach is feeling that day. I don't to spend my 30's this was as well!

If you are having success with colonic inertia and a tortuous colon and you are on some type of special regimen or medication please let me know. I am very curious for feedback on this as I make my decision. The more I talk to other people on the forums about the surgery the more I am thinking this might be the answer for me. I am scared about the frequent bm's but at the same time it is better then having waste in my body for 2 weeks at a time.

I just dont see that this specialist will have much to offer me.. unless anyone out there has any ideas on what they might be able to offer me.. I would like to hear them.

[Morecambe]

If you decide to undergo a total colectomy then this is a well-practised operation.  Don't get me wrong - it is a "big operation" and I recommend that you entrust yourself to a top-grade colorectal surgeon rather than a general surgeon.

I underwent a total colectomy in 2004 for torrential diverticular bleeding and recorded my experiences on:-

http://www.medhelp.org/posts/show/523166

There are ways that the frequency - and consistency - of bowel motions (after surgery) can be moderated and I would suggest that you balance whether the relief of your suffering is a "greater need" than the prospect of looser and more frequent bowel motions.

regards
Morecambe

[ng1031]

Thank you once again for all your info on this surgery. I truely appreciate it. After having my Thanksgiving weekend almost ruined due to stomach aches it was a good pushing point for me as to why I am moving forward with surgery. Or would like to. I have left a message with my colon surgeon's nurse (since he is out) saying I would like to know what can be done to move forward with this. Not going for 2 weeks at a time is making me miserable and it depresses me.

[ng1031]

Has anyone had there large intestine removed and had their small intestine attached to their rectum for colonic inertia and ended up with constipation after surgery? I heard that is a risk factor. That you can get the surgery but there might be a chance you will have constipation again one day. Also has anyone had their large intestine removed for colonic inertia and then their small intestine eventually give out on them? What happened then? .

[ng1031]

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!

[ng1031]

so my 2 procedures are complete and the results show I now have anterior rectocele on top of everything else. My next step is to see a surgeon for my options on this now

[JulesA]

Hi Im sorry you are suffering like this and it has gone on a long time.  Im suffering too with digestive problems but its to do with my stomach.  Ive been through tests and in hospital.  I have been having problems eating and pain.  Once I had a blocked colon and couldn,t go for a week,the pain was terrible.  I understand what you are going through.  I know that if you have the problems you do with the colon then you may have to consider surgery.  I hope you get some relief if you go ahead.  I was wondering what you eat?  Also if any kind of diet might help or even the Chinese medicine,just to ease symptoms.  I had acupunture,I wouldn,t give up.  Try what you can,we battle on.

[ng1031]

Herb wise there is a tea called Eaters Digest that helps me when my stomach is uneasy or hurting.

[kris697]

I am a 34 yr old woman. Giving birth to my daughter 5 yrs ago, everything(vagina, rectum, bladder, uterous, and even my intestines) prolapsed. I've had several reconstructive surguries, a hysterectomy, rectocele, cystocele, and a total colectomy. My small intestines are hooked up to my rectum and this wouldn't be so bad if I didnt have crohn's disease on top of everything. Even with taking Mirilac 4 times a day, I am still having problems defecating and was wondering if anyone else had a similar issues with this resection?

Also I was wondering if anyone else has ever had a problem with a colon transit study, Shortly after I had the study done, my large intestines were removed due to the colonic enertia. I never passed the tags(until recently) and they became lodged into the lining of my small intestines. I probably have a very rare case but it never hurts to ask!

Any advice would be greatly appreciated! Thanks!

Kris

[ng1031]

Wow I didnt have that issue with the colon transit study. I still had almost all the rings inside me on the 3rd xray. They were all in my large intestine. The surgeon that had the test order said I had colonic inertian but then another doctor said I didn't. So who knows ..

[khitch39]

Well, I don't know what you ever found out, but I am in the same situation.  I have an elongated and tortuous colon with colonic inertia and a rectocele.  .  I am seeing another surgeon on this Monday to see if the rectocele needs to be addressed.  The surgeon stated that he believes this is secondary and that if it is not bad, they are not going to fix it until they absolutley have to.  they said that this is something that gets worse with age and since I am only 36, they would prefer not to do it until later in life as with each surgery it gets less effective.  So they will evaluate this Monday and if all is ok - they will schedule me for the subtotal coloctomy with ileorectal anastomosis.

[ng1031]

Yes thats what happened to me. My rectocele is pretty normal from what my urogyno told me. So no surgery there. Right now I have removed sugars, white flours and wheat from my diet and my stomach aches and bloating have decreased. Still working on my constipation issues though.

[ng1031]

Just an update..

I got into the Mayo Clinic in MN and finally am getting answers. I had a slow transit study that was a 48 hour one as well as an EKG more blood work and a colonic manometry test.  I have a very long, verry loopy slow transit colon. My pacemaker cells in my right side of my colon are dead or dieing off and it is causing me to back up all the way to my small intestine. IBS and SIBO are no longer even diagnosed for me as the symptoms of those happen in patients who have slow transit etc.  I was on Resolor for one month and that did not work. I am now setting up my surgery! The surgery I will be having is called laparoscopic colectomy with ileorectal anastomosis and I will not need a colostomy bag. My surgery will also take place at Mayo Clinic. Another 7 hour drive from home but well worth it! FINALLY getting answers!!!

[emway]

your story sounds like mine - have you had the colectomy surgery yet? I am seriously considering it .... I had a rectal prolapse and severely redundant transverse and sigmoid colon and slow transit constipation following difficult childbirth and underwent a resection rectopexy last May (2012) to fix the prolapse and resect the redundant sigmoid colon but my redundant transverse colon was left as the surgeon at that time didn't want to run the risk of me having a total colectomy.  Whilst things have improved a bit - the improvements are not good enough and I am having a sacral nerve stimulator implanted next week which should help with some of the pain and also the frequency and amount of bowel movements ..... but my fear is that this still won't be good enough and that I will end up with a total colectomy at some point.  I'm with you - the pain and the discomfort etc from not having normal bowel movements seems far worse than having to go for a No 2 6-8 times a day and I'd be interested to hear how you get on.

[ng1031]

I have my surgery next Friday actually. My rectocele was too small to be causing me any issues. Mine is a side effect of straining from the colonic inertia/slow transit motility. Because mine is so small it should not effect my surgery. Some people who have larger ones have more complications or risk of complications for surgery. My surgery is a laparoscopic colectomy with ileorectal anastomosis

[ng1031]

I formed an ileus and it was hell!! I was in the hospital in so much pain after surgery.. was actually released after 8 days and then rushed to the ER and readmitted for another 10 days.

[ng1031]

Just wanted to update everyone incase they experience the same thing. The reason I was experiencing so much cramping was actually NOT normal and was a sign of a very serious blockage.

On February 26, 2013 I was rushed to my local ER because of course I could not go back to Mayo in MN. After weeks of cramping my bowel movements started to slow down drastically. Each time I was concerned I would contact my surgeon at Mayo who would refer me to his nurse who would call me and tell me this was normal. Before I knew it I had not gone in 3 days and was feeling worse so I contacted my motility specialist at Mayo who instructed me to go to my local ER. I am glad that I did. The ileus blockage at the anastomosis came back with a vengenous. The doctors told me that the first blockage I got may have been due to the flopped over section of the small intestine blocking my rectum however the twist did not "form". The twist was the way my small bowl was when the surgeons connected it to my rectum. When they cleared the blockage the twist was still there and opened up but it formed a crease where it was flopped over. So now my body was trying to heal the crease and in the process was closing up that area of the connection. It was to the point they could not open me up with a decompression tube like last time because it was pretty much healed shut with only 2 cm if that to spare. Another surgery was the only way to fix it. The surgeon at my local hospital went in to do laproscopic but ended up having to do "open" surgery to be able to see and fix things correctly. He removed the healed up/closed shut anastomosis connection. He then created a new one that flows with my body and has a larger diameter. The small bowel no longer twists as it connects to the rectum. It not flows with the curvature correctly to allow bowel to flow the way it is suppose to.

[Jenny421]

Hi, I am scheduled this Friday to have a total colectomy the same as you connecting my small intestine to rectum as a solution to my constipation.  My colon is long with extra loop as well.  I am scared for sure, I'm just not sure if I should've put it off & continued trying natural alternatives.  I've been taking Turkey Rhubarb supplements, Align, & Coconut oil, also milk of magnesia & ducolax suppositories as needed.  As it so happens I have been having very good bowel movements the past few days--which now leaves me questioning if I could continue to have such luck or not.  It has been many years of constipation & I thought I was mentally ready for surgury but now not so sure.  I'm curious how you are doing now & if your quality of life is better having had the surgery? Unlike you, my surgeon was quick to recommend surgery on our first meeting which lasted only 5-10 minutes, I hadn't expected that, however he is a top surgeon in my area & I do trust his judgement

[ng1031]

As long as you have had all the tests done that show your small intestine, stomach, pelvic floor and rectum are working then you should be ok.

I am doing WAY better. Next week will be 6 weeks since the 2nd surgery I had to have the anastomosis redone due to the blockage etc. But I am going to the bathroom every single day. I eat and then within an hour to 3 hours I have to go. It's easy to pass too. Sometimes too easy but since my rectum works I am able to hold it etc. No worries about accidents. The only concern I have is when I will be out in public and have to go. I just have to be sure that when I feel any bit of urge to get to the bathroom to be sure no one beats me to it. Baby wipes unscented are my best friend. Keeps things clean and from hurting. I can eat things I never could before. I got the pathology report back recently and the nerves in my large intestine lining were non existant. They showed me a pic of a regular one and mine and there were no nerves left. Mine was stretched out 10ft and a normal one is 5ft long. Had I not had surgery I would have only gotten worse and it was headed that way. It's nice not to be bloated and looking pregnant because I have not had a BM in 2-3 weeks.

[Jenny421]

Thanks for your quick reply.  That's great that you are feeling better as you've had a long road & deserve some relief.  I will check out the link you sent.  My surgery is Friday & I am going through with it, I guess my main anxiety is worrying how it will affect my parenting ability if I have complications or a long recovery.  I'm doing this in part to be a better functioning parent & I hope that will be the case.  Good luck to you

[ng1031]

just keep thinking long term how this will be a better life for you and your kids.

[CRRusty]

Hey folks, new 'guy' Rusty....I have read all the posts and comments... amazing!!  I am a 54 yr old male (soon to be 55)...recent history of abdominal pain since Jan 2013. Have lost 25 pounds (now weigh what I did in 10th grade) trying to avoid the constipation & pain. Miralax is no help, now using Relistor 12 mg injections just to relieve gas pains & constipation; 3 days with no BM is...well yall know!!!  I'm very active, big eater (of the right foods) with 3 meals a day. When all this started in Jan I was at 188 lbs...now weighing 163-165 lbs. Three attempted colonoscopy...couldn't get cleaned out. Frustrated I went to our local Mayo...did a 6 day liquid diet used the prep liquid and relistor injections to finally get cleaned...the 4th scope went well. The doc writes; '...the scope was technically difficult and complex due to a tortuous colon. The procedure was aided by applying abdominal pressure.'

Bottom line is everything is done...aside from the hernia (developed sometime in January) on the lower right quadrant the Mayo doc says I'll be fine and I can deal with it...just get off pain meds, she says "you don't need them" and "your body will fix itself (aside from the hernia) and the constipation & abdominal pain will go away."

Mayo has my surgical history; left knee X 4 (with partial knee replacement), lumbar surgery (w/ hardware) times 2, cervical spine surgery times 2 (three disc removed w/ 4 level fusion), left shoulder repairs w/ mumford resuction times 2, and a right shoulder rebuild. Being a former athlete has it's price!!! And I still believe in working hard & playing hard. And even today I have rotator cuff tears in both shoulders (again) and the partial left knee (done 11 years) giving out... and the doc says get off pain meds. What I did do to prove to the world it's not the meds is cut all pain meds by two-thirds... and nothing has changed except increase in pain levels & stress!!

I'm done with Mayo...the GI department is under staffed and over booked. A simple follow-up appt was 60 days out. Yea, I pulled strings to get in sooner...what a waste of time!!!!

With two college degrees and a 30 yr Air Force career behind me I have to ask...why can't these docs just remove parts of the colon causing the problems??  I short...and simple terms...reach inside pinch and pull parts of the colon inside itself?  Visualize the toy Life Savers (the flashlight wand things) kids play with; the plastic wand part goes inside itself 'gets shorter' without removing anything.

Anyway...all that I've read, you folks have offered the most info and insight. What I can't grasp is the majority of people having these problems are females...not a bad thing...just scratching my head as to how did I get so lucky.

As I mentioned earlier, I eat well and eat good foods; morning breakfast (daily) is 4 eggs and 2 cups of grits (sometimes include canalope), lunch is usually grilled chicken or I make flat bread pizza with grilled chicken, and dinner always includes a salad and green vegies along with a meat or fish.  I do take B12 (sublingual) daily (improves energy & nerve health), I do my own juicing once a week... I'm not a health nut but do eat well. And yes I cook my own meals and clean up my own mess!!!

I am at odds with all this!!!  Life was just fine...then all the sudden...I'm stuck all these problems. Thanks for letting me vent...and I'll take all the advise and helpful hints I can get.

If anyone else need help getting things to move along please talk to your doctor about relistor self injection pens. Comes in 4mg, 6mg, & 12mg pens with very small & short needles. Pinch the skin above the waist line and inject into the skin & fat...takes 6 seconds or less and generally produces a BM within 20 min (or some gas). It will not affect or lessen the impact of any meds you may be taking... like the stool softners do!!

[CalGal]

CRRusty, I don't have the issue you're facing, but I'm wondering about something. Does any one in your family have any food intolerances? A couple of the 'biggies' are: gluten (wheat, rye and barley), dairy, eggs and soy.

I'm not discounting the fact of the longer than normal colon, but it seemed to be working fairly well for you for some time. I've worked with individuals who suddenly seemed to 'develop' constipation - severe constipation - almost overnight and the problem resulted from food issues as crazy as that might sound. When the food or foods were removed from their diet the constipation reversed itself. Any possibility in your case? Any other small symptoms that might not seem to tie in to the constipation like rashes, brain fog, fatigue or lethargy, migraines, or?????

As far as the colon resection goes, many times it can depend on the 'routing' of the vasculature. It's not uniform throughout the colon, nor is it the same in each individual. If the length of the colon is mapped during the workup for this operation and sections are found that are not 'working' or involved in the 'looping,' and they have good input of vasculature, but the surrounding areas don't, you can't put together large sections without a decent blood supply. That section of the colon just won't survive and you're in for trouble. I'm sure there are other considerations, but that's one of them.

[ConflictedReSurgery]

Thank you for taking the time to post your story.  I have a similar story with chronic constipation for years. I've gotten the "formula" down where I can have a BM each time I take the med combo, but the med combo causes significant bloating and pain.
My surgeon already performed a surgery on me in Jan 2013 due to rectal prolapse. Now given the colonic inertia, my surgeon says it's a quality of life issue, not an emergency, to have the surgery or not (remove colon).  It was verified that my small intestine and rectum work.  I'm just trying to figure out if the full colon removal is worth it?
Like I said, the meds I take nightly have me up and down most of the night with painful bloating and distention. However, I am able to go each night (IF I take the meds). If I take nothing, I wouldn't go for about a week, and then it would only be a little bit that is very hard.
Now that it's been some time since your surgery, I'm wondering how satisfied you are? Would you do the surgery again? Do you tend to get bloated and/or distended? Since the surgery and presumably not taking laxatives/ other prescriptions to have BMs, have you found that you've gained a bunch of weight? Do you seem to have control or do you tend to have accidents/ not be able to get to a restroom quickly?
I have a new job coming up where I will be traveling a bunch... just wondering if I have the surgery, if I'll be able to manage the urges? Alternatively, not having the surgery, I would continue taking a bunch of meds nightly and be up a lot at nights and feel pain/ bloating/ distended.... but I do have control and don't worry about accidents.

If you wouldn't mind, could you give me your opinion on all of this now that you've lived it for a while?  Thank you in advance for any input you have!

[ng1031]

I would not change it for the world. I went through really odd and very scary complications. I even had to have a 2nd surgery to correct things and I will tell you I am SOOO much happier. I will be at 8 months post my 2nd surgery. I still am not 100% me yet cause I did have 2 major surgeries this year but in the bathroom dept I could not be happier. I go more than the average person and some foods don’t agree with me (or go through me quicker) but I GO! And I am so grateful for that. It is VERY important that your rectum works because you have to be able to hold it. I have not had any accident issues. The only time I did was right after surgery in the hospital. They tell you to keep trying to pass gas and when you do sometimes it is watery etc. That scared me when I went home. I was like how will I know.. but as time went on that got better and have not any issues with control. My surgeon made sure to keep enough rectum that I still have my reserve so to say. A common mistake some make is their surgeons will take away too much rectum and then they are running to the washroom etc. I lost a ton of weight. I actually was back to my high school weight but that was because I was living off tubes and then soft foods for months due to the extended hospital stays and complications with my surgery. I gained a healthy amount of weight back now that I am eating and my body adjusted. I am still 10 lbs less then I was before my surgery. I also do not look bloated and pregnant. See for me I would not go for 2 weeks at a time even with meds. It was getting to the point I was starting to not go for 3 weeks. The pathology report showed my large intestine was dead (no nerves) and it was stretching out to make room when I would eat. I would only go when I was so filled up I would either throw up or finally go. When the removed it they said it was double in length then a normal large intestine. The surgeons kept saying “it was sooo long”. Just knowing all that after surgery made me finally feel like I was not crazy! That something was seriously wrong.  As far as medications.. now the only thing I take is for my bile reflux and I still take probiotics because I feel they are always good to have. Before surgery I was popping meds like crazy. On top of just meds to get me to go I was constantly fighting stomach aches and pains. I feel like I am getting my life back again!