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

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.
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Avatar_m_tn
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
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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.
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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? .
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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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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
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Avatar_n_tn
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.
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Herb wise there is a tea called Eaters Digest that helps me when my stomach is uneasy or hurting.
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Avatar_f_tn
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
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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 ..
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Avatar_f_tn
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.
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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.
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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!!!
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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.
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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
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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.
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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.
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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
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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.
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Avatar_f_tn
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
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just keep thinking long term how this will be a better life for you and your kids.
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Avatar_m_tn
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!!
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Avatar_f_tn
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.
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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!
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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!
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Wow, that is so great to hear!! I had one surgery previously in January 2013 bc I was prolapsing (due to ongoing strain from chronic constipation), but my surgeon did an exam yesterday to ensure that I have enough rectum left.  She said I do so that's good (~10 cm). I believe my rectum is working properly, as I'm able to hold it; however, there are times that I can't go even though I feel like I need to... hard to say if it's a functional issue or due to the chronic constipation. (The surgeon referred to it as the "chicken/ egg" question).
How long was it before you were able to return to work?  I am starting a new position that will have me both in the office and traveling. I suspect it's a matter of getting used to the changes, but wondering a ballpark on how long before you were ready to resume normal work duties? My surgeon said 6 weeks before I could lift whatever I want and return when I feel good enough.  For my last surgery, I was off 3.5 months (ugh!) but that was bc I couldn't get the med combo mastered well enough not to feel sick, bloated and a lot of pain during the work day due to continued constipation.
I am so grateful to you for your information and hearing your story. I feel so alone and am so uncertain about my decision. I can't imagine making my situation worse (if i choose surgery and it turns out not to be the right option) since as you know, "once it's gone, it's gone".
My surgeon said my colon is not completely paralyzed like it sounds like yours was, but she said it will not get any better... it may or may not get worse over time.  There is no way to predict that.  It's just extremely slow.  Also, she verified that my small intestine works fine through the Sitz Marker test.
I know that none of us are getting any younger, so I'm kind of thinking that if I have to do it at some point, why wait.... Just go back and forth in my head about what the right thing is.
After hearing your story, sounds like it's the right thing..... I think. I know you had complications including a second surgery, but after that, how long before you returned to work (if you work?)
Thanks SO MUCH for all of your information and sharing your story!! Sounds like such a life improvement for you and I couldn't be happier for you!
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Once its gone is gone is exactly why I went to Mayo Clinic in MN and had them do some tests on me that I had not done (and I had over 14 tests and procedures at that point). Once I had those tests is when I decided to move forward. I have a small rectocele due to straining from my condition. I had a full urogynocologist exam and I also did biofeedback with a physical therapist just to be sure that was not the cause of my issues. Both said that if anyone told me it was then to get another opinion because my rectocele was pretty average to the point most woman have it and don't really even know it. I only knew it cause it showed up on my defecography test. They told me it was the reason I don't always feel empty after a BM. Which makes sense. But it is a side effect of straining all these years as I have not had any children and am only 32 years old.

I am a hard one to go by as far as going back to work but I was told 6 weeks.. I was far ready at 6 weeks due to complications. Here is a break down of my story that is from my profile on the inspire website (ng1031 is my account if your on there)...

On January 18th, 2013 I had a laparoscopic colectomy with ileorectal anastomosis surgery done by Dr. Cima at Rochester Methodist Hospital (Mayo). The surgery went well and they removed 10ft of large intestine. The surgeons kept telling me "it was VERY VERY long" as if they had never seen one so long before. They told me it was 2 times the size of a normal large intestine. I did not have a megacolon but I had a lot of length. I was in the hospital for 8 days due to complications. I was throwing up every day until I was given an NG tube. They said my small bowel was taking its time to wake up. I was released from the hospital on Jan 25th.

On January 27th, 2013 I was rushed back into Mayo by ambulance (thank god we hadn't got on our flight home yet) and was readmitted. I was in massive amounts of pain to the point the paramedics had to pick me up off the hotel bathroom floor and I was having panic attacks . Apparently I had formed what they referred to as an "ileus blockage" that only happens to 10% of patients after this surgery. They told me there was a twist near the anastomosis site that was "flopping over blocking the rectum". I was told they had never seen a blockage like mine before and had to consult with other surgeons on how to move forward. After a lot of morphine, another NG tube, CT scans, xrays, a sigmoidoscopy with balloon dilation (to go in and blow air inside me to move the twisted portion off the rectum) and a decompression tube, I was finally released on Feb 5th.

On February 26, 2013 I was rushed to my local Silvercross Hospital ER in Illinois. After weeks of very painful cramping my bowel movements started to slow down drastically. Each time I was concerned I would contact Dr. Cima and his staff who would tell me this was the normal surgery healing process and not to be alarmed. Before I knew it I had not had a bowel movement in 3 days and was feeling worse and worse. I decided to contact Dr. Camilleri who instructed me to go to my local ER. I am glad that I did. The blockage came back with a vengeance. In a sense it never left. The doctors as Silvercross explained to me that the first blockage I got may have been due to the flopped over twisted section of the small intestine blocking my rectum however the twist was still there and would continue to cause me problems. The twist was the way my small bowl naturally curved when the surgeons connected it to my rectum. However it was a 360 degree twist right before the anastomosis. When the doctors at Mayo cleared the blockage with the balloon dilation the twist moved away from the rectum and opened up but it formed a crease where it had flopped over. So then my body tried to heal the crease and in the process was closing up the anastomosis connection. A GI doctor at Silver Cross tried the less evasive approach to see if another sigmoidoscopy/balloon dilation would open up the anastomosis connection but it was to the point it was pretty much almost completely healed shut. By then it was more days of no bowel movements and my small intestine was becoming inflamed. It came down to it that another surgery was the only way to fix it. I was given Dr. Bass who was a wonderful surgeon. On March 2nd, he went in to do laproscopic surgery but ended up having to do "open" surgery to be able to see and fix things correctly. He removed the twisted area of the small intestine as well as the original anastomosis connection that was closing shut. He then created a new anastomosis connection that flows with my body and has a larger diameter. The small bowel no longer twists as it connects to the rectum. It now flows with the correct curvature to allow bowel movements to flow the way they are suppose to with less chance of a recurring blockage. In a sense he fixed my plumbing :) He also removed a small cyst on my right fallopian tube while he was in there that I was not aware of. I was released to start my recovery process all over again on the evening of March 6th.

I was released to go back to work finally on April 20th.

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I'm amazed at all you went through!  What a story, and I'm so glad to hear that you are so happy with the end results after all of that! It sounds like after your last surgery to the time you started feeling human again wasn't too long, but I give you a lot of credit for all of that surgery at such a young age.  I guess you didn't have a lot of choice, but still.
I am 37 y.o. and I feel like this has been all consuming for years and years. I too have had all kinds of tests as well as physical therapy including biofeedback, and the tests seem to point to colonic inertia. My colon as I mentioned isn't completely paralyzed, just very very slow... no hope of getting better from what they say, just the possibility of more of the same or worse.
I'm not as young as you, but still young. One of my biggest fears is having something go wrong and ending up with a bag. (The dr just said it's a possibility but rare). Since I'm single and have so many years of life left, I can't imagine having a worse situation than I'm in now (with a bag or some other un-pleasantry)
Did they ever say that having a bag permanently was a risk for you? My surgeon verified I have enough rectum on Tuesday... it's just a concern that is probably not based in reality.
Thank you again for all of your insight and experience. You sound like a super hero :)
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What I was told is that I could wake up from surgery with a temporary bag. But that is if there was a worse case scenario and they thought it would be beneficial to let me heal before reconnecting me. So say they went in and cut the large intestine out and they saw it would be best to attach a bag and allow my body to adjust and heal and then do another surgery to remove the bag and then connect the small intestine to the rectum then they would do that. They told me at Mayo that they frown upon doing that unless it is neccessary. They prefer to do it all the first time around so they don't have to go in again. They try to avoid more surgeries at all costs. So for me a bag was not needed even after all that I went through. And like you I did not want one unless I had no other choice etc.
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Thanks again for all of your information and sharing your story. I think I'm going to go through with the surgery, and I set the date for 12-4-13 to give me more time to wrap some things up at work. Looking forward to feeling human again and having a better quality of life!
Thanks again and good luck with your continued recovery!
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Best of luck to you! Glad I could help :)
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Hello....I just read all your posts and I am going thru the exact same thing, too.  My surgery is scheduled for two weeks from today.  Nov, 13 th. It's been a LONG road to get to this decision...and I have also gone thru all the awful tests. I'm so ready to have this done and get some quality of life back. I'm glad it has worked for you after all you went thru. Thank you for sharing your story...it has been very informative and helpful. I hope you continue to have good results going forward. Thanks again for sharing.
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Good luck to you as well! After all the complications I would not trade it for the world!
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I wish you a lot of luck too! I am still going back and forth about whether to have the surgery, as I'm really concerned about not having a lot of control and being limited (more so than now) in what I can eat.  Have you found that you have to go right away after you eat ng1031?  I am scheduled to move to Northern CA from Southern CA right after the surgery for a job that requires a lot of travel.  Given some of the unknown of the new position and the unknown about how urgently I'll need to use the restroom, I'm really conflicted.  I guess I'm wondering if there are a bunch of food limitations and if right after you eat, you feel the need to go to the bathroom urgently?  (I often eat in my car on my way to places, and that won't work if you have to go right away)... Thanks again for all of the information.  My surgery is scheduled for 12/4/13 but still may back out of it...
Thank you!
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I wish you a lot of luck too! I am still going back and forth about whether to have the surgery, as I'm really concerned about not having a lot of control and being limited (more so than now) in what I can eat.  Have you found that you have to go right away after you eat ng1031?  I am scheduled to move to Northern CA from Southern CA right after the surgery for a job that requires a lot of travel.  Given some of the unknown of the new position and the unknown about how urgently I'll need to use the restroom, I'm really conflicted.  I guess I'm wondering if there are a bunch of food limitations and if right after you eat, you feel the need to go to the bathroom urgently?  (I often eat in my car on my way to places, and that won't work if you have to go right away)... Thanks again for all of the information.  My surgery is scheduled for 12/4/13 but still may back out of it...
Thank you!
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I think this is the biggest fear everyone has before this surgery. I will admit at first you do go quite a bit. You are going all day and be awaken at night to go. Your bowls also have to wake up and learn to adjust without the large intestine there. I still sometimes wake up in the middle of the night but not as often. At first its frustrating but then you start to realize I AM FINALLY ABLE TO GO AGAIN! And that makes it all worth it. You have to have patience at first. You start off on mush foods and gradually introduce foods in. There are certain foods you will learn that will cause you to go more liquidy and more frequently. One of them for sure is fruit juice drinks. You learn your trigger foods. As time progresses you go less and less. Now I go  pretty regular as a normal person but maybe a little more depending on what I eat. They will want you to start eating foods that bulk the stool up. Like breads and cheeses. It’s weird to go from staying away from these foods to being told to eat them. They will also eventually have you increase your fiber for the same reasons. Which can be scary as we are given fiber shoved down our throats to go go go. But it actually does help keep things thicker. When I go the consistency is either liquidy or that of toothpaste depending on what I eat. If your rectum is good then you should be able to hold it. The only issues I had with this was passing gas after surgery and during recovery. There were times where I thought I was “just passing gas” (which is encouraged cause you get gas stomach aches as your bowls start to wake up and you need to get it out) and had messes. This was during the recovery process at the hospital and at home. I was embarrassed when it happened to me in the hospital but the nurse told me not to be. She was like your on the colon rectal surgery floor for one we are use to this!!! and two we do not want you holding in gas. And it’s not like you go to the bathroom in the bed. It’s just liquid that comes out. The surgeons told me that would start to go away in time and it did. I was never told about this so that is why the TMI. If you feel you have to pass gas I suggest sitting on the toilet instead of just letting one “rip” ha ha. Atleast until this stops happening and you will know when it does stop. Bring  non scented baby wipes to the hospital with you. And keep them in your purse. They will be your best friend. They will help you feel clean. They also avoid pain down below from so much wiping. I know people told me to bring ointment just in case but I never needed it. I used the wipes and they worked wonders. They still do. I never have any issues and I actually never even use toilet paper anymore. These just work best. I remember right out of surgery I was being reminded to be patient and that things would start to get normal over time and it did. I am 8 months post my 2nd surgery and I really do feel like a new me. People just don’t realize how serious of a surgery this is and how it takes time for your body to adjust to it.
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I can't thank you enough for all of the info and for the details.  It is exactly what I need, and I appreciate your willingness to share it.  I know it's not the most pleasant thing to talk about, but what a help it is to hear! All of what you've written have been concerns of mine, and you make it seem so natural and doable.  I requested the second opinion and I'm waiting on that authorization. After reading your story and progression, it makes me want to go forward with it. How soon was it after your second surgery (if you recall) did you feel like you could control your urge to go enough and drive/ feel strong enough/ confident enough to return to work?  My doctor said 8 weeks before I can lift whatever I want but I can go back to work "whenever I feel like it."
I don't know if I'll ever have an opportunity to have kids, but I have to believe that doing the surgery and not having to take all of these drugs to go would be much healthier for a baby... in fact, I probably couldn't be on all of these drugs and be pregnant.
Thank you for your advice about the wipes.  I think it's a great suggestion, and I have carried them with me since my first surgery in Jan '13.  The surgeon did say that since I already had surgery due to rectal prolapse makes the colon removal surgery more complicated.  It's that tidbit coupled with her statement that she doesn't know what she would do in my situation that makes me so uncertain.  (She said it comes down to a quality of life issue).  However, the being "up all night in pain, then finally going"... and going and going is taking a toll.  I don't recall the last time I ate normally or slept more than 2 hours consecutively.
Again - thank you so much for all of your information; it is invaluable to me!
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Not a problem at all. I have no shame talking about any of this stuff. I can tell you what things looked like in the toilet bowl last night if you really wanted me to ha ha. I think you just become desensitized about this stuff when you have issues and you find others that make you feel less alone. I think my husband has finally realized that he is going to hear me talk about this stuff no matter if he wants to hear it or not ha ha. If I tell him I haven’t gone to the bathroom though he freaks out and thinks we should go to the ER for a scan ha ha. And then I eat dinner and I go ha ha. I went through so much he just doesn’t want to see me like that again.

So for me my 2nd surgery started the recovery process all over again (which really sucked). They told me that from the time of my 1st surgery until the 2nd surgery my body was never really in the recovery mode but in chaos mode not knowing what to do. I had my 2nd surgery on March 2nd and was told I could go back to work again on April 19th. I ended up running out of FMLA. Cause my 1st surgery was on January 18th. I was suppose to be off for approx 6 weeks give or take but then I ran into all the complications. Then I had to have the 2nd surgery etc.  I almost lost my job. 13 years I had worked for them and they had the nerve to tell me that FMLA ran out so if I didn’t come back the first week of April I could be fired. All while I was in a hospital bed. They pulled some strings to get me to keep my job. I went back on April 9th working from home but ended up quitting the next week. The stress of that job was putting too much toll on my health. I had already been applying places before my surgery and during recovery one of those places contacted me and interviewed me over the phone. I started my new job in another office (not from home) on May 1st.  I just told them when I interviewed what was going on and they just asked if I had any special need requirements. I just told them just don’t write me up for too many washroom breaks ha ha. But for the most part I have been fine here at my new job. A doc in pay but less stress and I really think that is why I am recovering now as well as I am. Had I been at my other job I don’t think I would have been this far along. Stress is a very very terrible thing on our health. I feel it had a lot to do with why I had issues to begin with.

The pathology report after my surgery showed that I had barely any nerves left in my large intestine and that it was pretty much dead. So for me surgery was really my only option.
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Gosh, we seem to have a lot in common relative to all of the job stuff.  I'm in an incredibly demanding/ stressful job, and it's been hard for me to set limits.  I'm single, and they look at it as I'm always available... and I haven't made myself unavailable in fear of political repercussions.  I feel like I'm rushing my decision to get the surgery because have to move to Sacramento for the job from Los Angeles.  Today I got approved by the insurance company for the second opinion, but that dr can't see me until after the first of the year.  Trouble is, to keep "on schedule" with work/ new position, I need to have the surgery (which is scheduled) on 12/4, to start job in mid January.  However, I really think I need to get a second opinion before going through with all of this.  Actually, I didn't know that a pathology report could be run to test the functionality of the nerves in the intestine until I read your note tonight.  I've had the balloon test, sitz marker test twice, some hydrogen test... maybe others - those are the ones that come to mind, but they haven't tested the functionality of the nerves from what I know.
For me, the meds that I am on each day (a ton of magnesium, laxatives, and Linzess which is a new drug as of Jan 2013) do help me go, but they also make me incredibly bloated, distended, and go approx 10 times through the night and early morning (bc I take them before bed... as not to have to go during the day at work).  So, I go, but feel sick nightly and sleep deprived.  Overall, it's really a quality of life issue... how long can I tolerate lack of sleep and feeling so sick/ bloated/ painful distension etc.
Geez, I wish my crystal ball and ability to predict the future was working properly!! haha
It sounds like you really don't get stopped up much anymore, right? Do you also feel like you empty out pretty well without excessive walking/ exercise to get things moving?  
That's another thing- I walk about 4 miles daily to get things moving before work which adds to the fatigue.
Just wondering if you feel like you eat more normally and can get emptied out without too much effort/ special diet/ regime?
I feel so lucky to have found you for advice - thanks so much again!
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If you really feel you should get a 2nd opinion then do so. This is a no joke surgery. And once the large intestine is gone its GONE! I got my another opinion before going through with mine. I actually sent my story to a motility specialist at Mayo Clinic who got me in and my husband and I drove over 8 hours to see him. He ran tests on me at Mayo that were not available here in IL. I was getting way too many mixed messages from doctors out here and was scared I was not making a good sound decision. The thing for me is that meds did't do anything for me. I would take things like Miralax, Laxatives, Fiber you name it and still not go for 2 - 3 weeks and then when I finally did it would be 2 - 3 weeks worth all at a time due to the medication all catching up to itself. I was finally just put on Miralax just to make the stools soft and easy to pass. My final medication was given to me as a last shot before moving forward with surgery. It was from the UK and I had to have it filled in Canada cause its illegal here in the US. It did nothing for me but make me sicker. When the motility specialist saw that he was like if this on top of Miralax then nothing is going to work and surgery is the clear option. Then I knew I had tried EVERY route and it was time to finally move forward with the surgery.

By the time I made my decision to have surgery I had seen well over 14 doctors/surgeons and had the following tests done...

Ultrasound of gallbladder
Blood Work (redone by every dr I saw)
Rectal Exams
Flexible Sigmoidoscopy
Upper GI Endoscopy
Esophageal Manometry
Gastric Empty Stomach Study
Physical Therapy with Biofeedback
Colonoscopy
Barium Enema Xray
Sitz Marker Xray
Anal Manometry
Barium Defecography
Urogynocologist complete gyno/rectal exam
Glucose Hydrogen Breath Test
48 Hour Transit Study
Colonic Manometry

After surgery during my complications I had to have the following additional tests...
CT Scan
Abdomanal Xrays
Hypaque Enema Xrays
Chest Xrays
EKG's

Another thing I wanted to tell you is that if you do have the surgery.. I highly suggest not ignoring your urges to go. If you feel the slightest bit like you might need to go.. that is your time to get up and go to the bathroom. Don't wait it out. I learned that is the best method to the madness. Waiting until you really have to go is not good. Like I said before if your rectums is all good you can hold it. The thing is the consistency will always be soft or watery because you no longer have the large intestine to absorb the water. So for me I just never ignore the urge and if I don't go and it was just gas.. well then so be it ha ha ha.

Another thing.. you will live off of Gatorade and Powerade to stay hydrated. Some doctors tell people to drink alot of water but after I got my 2nd surgery he explained to me that water doesn't do much but make your mouth not dry ha ha. He said with no large intestine if you drink water there is nothing in the water to absorb into the small intestine and the water just goes right through you. If you drink Gatorade and Powerade you absorb the electorlytes before it passes through you and it keeps you hydrated. You want to do this EVERYDAY! Because if you were to get the flu and you haven't been doing this.. you can expect to be in the hospital on ivs getting you rehydrated again.
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This is all so very helpful - I can't thank you enough.  I believe I've had most of the tests that you listed, some more than once.  I am working on getting a second opinion and trying to race the clock before I have to move for my job. Since I'm able to go each day I take all the meds the night before (even though I'm up a lot feeling pain/ bloated etc), whereas you were not able to go with the meds, I can understand why the doctor I have said it's a quality of life choice instead of being required like yours.
Just wish I really knew how my body will respond since this is the end of the road/ last option...
I am hoping that I can get a second opinion soon to maybe feel more certain of the decision.  You were really smart to have gotten so many opinions!
Also, thank you for the tip on Gatorade versus water! I will have to make a Costco run :)   You''re exactly right, getting the flu on top of it all would be a disaster.
Hope you're having a great weekend - thanks again for all of your insights and sharing - you've been a godsend!  
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Anytime. This is a huge decision to make and it is good to have people to ask who have gone through it cause it can be really scary! I would have been lost without my support group over at the Inspire group. There is a AGMD GI Motility Disorders Support Community on that site that is amazing. Helped me a ton and well still does. I am suffering now from post surgery bile reflux. I say post surgery as I never had this before my surgery. Fun Fun. But it sure beats anything I had wrong with me prior to my surgery.
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I'll have to check that site out too... All the info I can get is so helpful.  So sorry to hear about the reflux issue.  I've have acid reflux problems as long as I've had the constipation issues.  The Drs. say that the two are related and hope that I'll get some relief when the constipation problems are "resolved." I've been taking Protonix which has helped tremendously! It takes about 5 weeks to really work with continued improvement for about 6 months. I highly recommend it.  Now, I mostly just get the reflux when I eat spicy foods or drink bubbly/ caffeinated drinks like mountain dew  :)
I sure hope you get some relief soon; that is no fun! Be sure not to eat and lay down within about 2 hours, as that will make the reflux worse.
BTW, I've seen some of the posts say that they have struggled with keeping their weight down after the surgery and I've seen others say they don't have trouble with their weight. What's your experience with that?    
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Yah they ruled out acid reflux for me. I had that prior to surgery too and no longer do. They did an upper scope after acid reflux medications stopped working for me after surgery. The scope showed my stomach had a pool of bile in it. So it's bile that is coming up instead of acid now. Sometimes those 2 go hand in hand however since acid medication does nothing for me anymore I am now on Carafate. I have found Marshmallow root tea to be my new best friend! Works wonders and is all natural. I would like to eventually get completely off the Carafate but its too risky right now. I get these chest pain attacks that feel like a heart attack and they are so painful I sometimes experience panic attacks from them. The Carafate seems to help keep them at bay if taken regulary before I eat. But the minute I feel it coming on the tea seems to stop the attack from happening. This seems to be the only thing I can do. They wanted to put me on Reglan but I read the black box warning on it and said its not worth it to me. Especially taking it every time I eat!! Thats alot of that drug to be taking on a regular basis. No thank you!

For me due to my surgery and all the complications I was literally on NG tubes for weeks at a time. I was on them for 3 weeks.. got to go home and live on mush food.. then back in the hospital on the NG and iv tubes again for more weeks and then back to eating. So after surgery I was as small as I use to be back in high school. but I was weak and looked like hell so I didnt get to enjoy it all that much. I gained back about 10lbs once I started to eat regularly again. I am still down one pants size then I was prior to surgery tho so I guess that is good. I noticed some weight is starting to stick more though now that I am eating more and going less. So now 8 months post surgery I am trying to watch a little more of my over eating habits and trying to keep things at bay. I would like to try to keep the weight off. I think for me it was like OMG I CAN EAT THIS AGAIN! And I sortof over did it at first. Now it's time to rethink things ha ha

If you join inspire.. feel free to be friend me. I am use ng1031 on there.
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I will definitely friend you on Inspire - thanks for the tip!! When I had my first surgery for the rectal prolapse last January, they gave me Reglan to "help me go."  As it turned out, the Reglan made it worse for me and my problems with constipation seemed worse.  I ended up stopping it, and I was able to go some (very little). Overall, I don't recommend reglan either.
Still really back and forth about the surgery in that the combo of Linzess and 6 ducloax and 2400mg of magnesium daily does help me go.  Knowing that I am putting all of that in my body daily and possibly causing damage is scary.... as is having the surgery and not being in as much control.  I am usually someone who can make difficult decisions and feel confident that it is the right decision, regardless of how difficult/ painful etc.  Not sure why this one is so tough. I think it's bc I am able to go each night after taking the laxative combo. Just makes me bloated/ distended and in pain each night til it passes. It would be so nice to not have all of that... but so afraid of the devil I don't know.
My surgeon said she could do a temporary bag to let me experience what it would be like, but I'm not at all in favor of that.
Thanks again for the Inspire recommendation. I'm going to check that out too.  I hope you find relieve for the bile reflux soon! You've been thru so much; you deserve a free pass from here on out!!
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I had one surgeon tell me I had to have a temporary bag!! Hence why I got more opinions. I can see them suggesting it to see if you can handle it but at the same time it's not connected to your rectum. It will just show you what it will be like bm wise once you have the surgery. You won't be able to experience the urgency or anything of that matter. It also means more surgery. Cause they would do the surgery add the bag and then have to eventually remove the bag if you didn't want it anymore. I decided this weekend to go back to elimination diet. Just posted about it on my gofundme and in my inspire journal. I think it will help me with the bile reflux and the odd ball upset stomach aches I have been experiencing. Atleast I hope so!
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