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surgery? slow transit colon, chronic constipation, ibs-c
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surgery? slow transit colon, chronic constipation, ibs-c

Hi there, I'm new to this site. I am a 31 year old female and have had problems going to the restroom as long as I can remember. The last year and a half has become worse. I started paying more attention to my gi tract and wanted to help myself become more regular. So I started with the fiber, water, diet, exercise change and it only seemed to make things more heavy in my stomach. I tried miralax, stool softeners, laxatives, colonics,herbal teas, prescription meds and nothing is working to make me regular.it now, it actually has made things worse and more uncomfortable.  After a year of struggling, it seems as though my gi does not respond well to any meds or supplements. When I take meds my bowel seems to just turn to mush and sit there or swim back and forth like a fish bowl, but no release. When I push on my right side its all mushy and swishy sounding and my stomach makes a lot of noise - like clogged drains.  When I don't take meds, I get very bloated and feel full all the time, constipated. It usually takes 4-5 days or more and then ill have a release. Sometimes very lil, sometimes one big load. I feel sluggish and fatigued most days.
I have been in and out of the gi dept with plenty of tests. All blood tests come back normal, my heart rate is a lil above average but they say normal. I have had the sitz marker test and on day 3 they sit in my sigmoidcolon. I just did the camera capsule a wk and a half ago and waiting on results. My doc mentioned removing my colon/large intestines. I'm anxious for a resolution as my quality of life...honesty, *****. I am tired and just want to lay down. But really what I want is to feel normal and get out and enjoy the world.
Should I push for surgery? Larposcopic or open? Surgery is scary but living life the way I feel is even more scary to me. I feel I just want the surgery, recovery, and get back to my life.
Anyone have the same weird gi issues and/or results from doc? Please respond. Thanks.
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Have you had a colonoscopy?
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Yes, I had a colonoscopy and an upper gi and both were normal.
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I've had some of the same problems, basically I have liquid (not even mush) bowel movements and I am still constipated.  When I get x-ray's they show tons of liquid throughout my entire colon which won't move through the colon.  I've tried everything, same as you, and not much relief from anything.  One thing that does somewhat help is eating a very low fiber diet just so that there is less stuff having to pass through the colon.  Good luck.
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Thanks. I find that eating less fiber and especially carbs, or a liquid diet, sometimes helps. How is ur weight? I am pear shaped, range from 150-160 and I'm about 5'5". I think I'm about 155 right now. When I exercise I feel a bit better, but I don't lose weight. I even did a women's bootcamp 5 days a week for 2 months and didn't go down any dress sizes. I suppose I'm average but I can stand to lose some weight.
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What have the doctors said for you? What r ur next steps?
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When I was 14 (before I got sick) I weighed about 110.  When I got sick I gained 20 pounds in a year and then the next year another 10 pounds.  I weigh 140 pretty regularly except when I have a bad flare-up and can't eat and then I'll drop like 10 pounds in 2 weeks.  I am 17 years old.  I have a bunch of other problems besides my intestines, and the doctors are currently thinking they are all related and I have a dysautonomia.  My next steps are to see a second motility doctor that my current GI doctor wants me to see.  I'm also going to the Mayo clinic in a month to their dysautonomia clinic to see if they can help.  My newest med is Amitiza which doesn't really seem to be helping.
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In case you decide to seek colon surgery (total colectomy??) I underwent this operation about six years ago - but for different reasons i.e. torrential diverticular bleeding.

In response to another Medhelp patient's question, I posted my experience on:-

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

You may like to print this off and ask your surgeon whether he/she agrees with my own observations as a basis for your decision to/not to undergo surgery.  As you suggest, I believe that in certain circumstances this operation can indeed be performed laparoscopically.

Do come back if you have any questions.

regards
Morecambe
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Patient915: I was on amitiza for a bit too and it didn't work at all, just made me more bloated and uncomfortable. I hope they find something for u. Has the doc mentioned surgery for u? I know ure young however I also know it has happened at all ages.     Good luck, take care.
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Morecambe: thanks I will definitely print and read. I have read through a lot of older posts already and many of urs too. U have seemed quite honest and respected on this site.
At this point, I am just exhausted of feeling this way. I feel like some or all of my large intestines are 'broken' - and if I don't need them, then take it out so I can get on w my life. I'm sure its not as easy as 1-2-3 but its gotta be easy then my daily routine of trying to hav some kind of release so I can feel decent.
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Morecambe: I read through ur post and it was very informative about the surgery and process. I wrote to my doctor today and the nurse called me to let me know he is on vacation this wk, so I probably won't hear anything until next week regarding the capsule test.
I basically explained to him that if surgery is an option for me that I would like to move forward. I know something is wrong and its not getting better, yet worse - with or without meds. I am not scared of surgery if there's a good possibility of getting better, as I am over feeling the way I do daily.  So, we will see what is ahead for me.
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Morecambe: I read through ur post and it was very informative about the surgery and process. I wrote to my doctor today and the nurse called me to let me know he is on vacation this wk, so I probably won't hear anything until next week regarding the capsule test.
I basically explained to him that if surgery is an option for me that I would like to move forward. I know something is wrong and its not getting better, yet worse - with or without meds. I am not scared of surgery if there's a good possibility of getting better, as I am over feeling the way I do daily.  So, we will see what is ahead for me.
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Hi again.  In similar postings, I have gained the opinion that chemical laxatives eventually lose effectiveness after long-term use.  Of course, if you can solve the problem via a very high fibre diet, then that is preferable to surgery.  My example of a very high fibre diet would be:-

- pulverised fresh vegetables to which organic bran has been added
- pulverised fresh fruit to which organic bran has been added
- also add organic bran to yoghurts etc etc
- only organic wholemeal bread - no white bread, cakes, junk food etc
- home made muesli (soak organic oats and bran in milk, add chopped nuts, grated fresh fruit, lemon juice etc.  It looks like wet cement but it tastes OK)
- regular meals should include vegetables, salads, fresh fruit and so on.
- minimum 2 litres of water per day

And if that does not - or has not - generated regular bowel movements, then maybe the surgery option can be explored.  If you pursue this option, then do consult a specialist G.I. surgeon who performs total colectomies all day/every day rather than a general surgeon whose expertise is less in the key area of G.I. surgery.   I think the Mayo Clinics do specialise in G.I. complaints and you are sure to be in the best hands.

regards
Morecambe
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Barbeezee,
I had the same problems as you and I had a total colectomy about 4 years ago.  6 months after my colectomy, my gallbladder ruptured and almost killed me and I had that removed.  I have never been the same.  I have a minimum of 15 bowel movements a day and it can go up to 35.  My life revolves around the bathroom.  I have a limited diet because nuts, fruits, veggies, seeds, fat, sugar, and dairy increase my bowel movements and cause severe pain. I have gas all the time and I swell very bad.  I don't do outdoor activities anymore or exercise and I have anemia, sleeplessness, dehydration and other issues that have rocked my life.  I wish I had talked to a community like this before my surgery.  On the flip side, I have read about others who have 6 to 8 bowel movements after the surgery, eat about the same and have not missed a beat.  Honestly, this surgery has created five times more problems than I had before when I could go two weeks without going to the restroom.  The surgery itself was not bad and I recovered from the operation part well.  It is life after everything is suppose to go back to normal. For me it is not normal at all.  
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Crallen's experiences as recorded above are the first instance I have observed in which the seemingly successful outcome from a total colectomy has been followed by a gall bladder problem.  The obvious question is whether this was an unfortunate coincidence or whether a colectomy can increase the probability of an eventual gall bladder rupture.  A relevant question to ask your surgeon I think.

All the best anyway - and to Crallen too.  I hope that medical science can yet alleviate your discomfort.

regards
Morecambe
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Morecambe is correct.  The colectomy may had nothing to do with the gall bladder.  However, I think not having a gall bladder adds to the problems of not having a large intestines.  The bile that goes to my somach seems to be going full force and it causes burning all the time.  That could be a huge issue in my situation and it may be making my bowel movement more and increasing the impact of the colectomy.
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The doctors have mentioned that I might need surgery eventually but I'm still looking into some things.
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Thank you for all your responses. My doctor was on vacation this past week so I was not able to get my results from the camera capsule yet, however I should be hearing on it this week. My concern is that the capsule only looks at the small intestines and (the good part) is the ileo valve. I had been concerned about the valve because when I push on my right side there is often times the water, squishy sound - and seems to suck back and forth.
I have been continuing to read up on the surgery as I want to make sure that, if I go that route, it is the right decision. Today, I am not feeling well, again. I may have one day a week that I feel "ok" but really I feel bloated, and feel full of bowel and lliquid - backed up from the prior days. If I do have a bowel movement, it is very little - about the size of a finger. And...the really sad thing is that it takes so much out of me - pushing, moveing around, stomach massages, just to get that. Sadly, after all the pushing I am exhausted, look down at the toliet, and really disappointed that "that" was it. (haha, sorry if that is too much description!)
One of my roommates tells me to think positive (all the time), I believe she thinks its all psychological, but I know she is wrong. I do admit, that when I just go and not think about it, it is somewhat better - because I am putting on a good face - but in the background, I still feel like crap - and cant wait to get home to my comfort zone.

To morecambe: I have tried the high fiber diet, and that has made things stick and stay in my GI longer. I become more constipated and full, and so that is why we tested for colonic inertia. I have also tried an all veggie diet, all liquid diet, and a eat many little meals during the day diet. All turned up pretty much the same: still constipated and bloated, and I dont lose weight even.
I still exercise - like today went on a 4.5 mile run/walk - even though I feel bad. I am trying to keep my weight where it is at least, but it is hard to lose anything even with the strick diets.

To crallen: Thank you for sharing your story. I am sorry to hear that you had the gallbadder complication. It will be something I mention to my doctor before moving forward with the surgery just to make sure that isnt something that is normal or happens afterwards. I hope there is a solution to the current issues that you are in. I know how it feels to live with a "function" illness everyday, so I do hope there are optiions for you.

I look forward to hearing from as many people as possible. It is nice to know real life experiences with the surgery, or suffering from partial/total colonic inertia, and/or chronic constipation issues. Thank you to all that have already ressponded. I will keep you posted on what is to come - and if I do have the surgery, I am sure I will be online during recovery, to post my experience.
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Tomorrow I have a consult with the gi surgeon. It is kindof weird to me cause my regular gi doc didn't necessarily approve the surgery yet, he just said he recommends me talk to the surgeon about a subtotal colectomy. I am anxious for what is to come. I can't imagine living the way I have been. My quality of life has been hindered to a point that I don't even feel like myself anylonger. There r so many things I want to go out and do but I feel so 'ugly' and uncomfortable that going out doesnot sound enticing any longer.
I will post the outcome. Cross my fingers for the right next move.      
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So talked to the surgeon last sunday. He says there are more tests, like 5 I need to complete before he will do surgery. So, I am filled up w/ doc dates to do the last month worth of exams. If I'm remembering correctly, I have to do a defactory exam, a manometry exam, small bowel transit exam,and one other but I forget. I just finshed a 5 days sitz tests and waiting on results. Also, he had me go to the pysch to just make sure it wasn't mental. I passed w flying colors. The lady realized I'm not depressed, I'm just uncomfortable all the time. So may 24th I have the 2nd meeting w the surgeon to review all th exams and move forward. He just wants to make sure its not anyother thing than colonic inertia. I appreciate them making sure, yet I get impatient somedays when I am feeling really ill. Hope things work out for the best and whatever happens I am fixed. So exhausted and want me life back. :) I'm hopeful for that. Ok, the saga continues...until next time.
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Hi barbeezee. I was looking up the words "mayo slow transit colon" five minutes ago using Google and I came across this forum. I am so glad that I found this. I am so sorry for you. I read off your post to my mom because believe it or not but I have everything you mentioned. I have been to the doctors over and over again for constipation, all I want is to go back to my old life. I joined this forum *if that even is what it is called*
just so I could talk to you. I have been having constipation troubles for a little over a year now.

All of my blood test, even my colonoscoy and endosocopy came back fine. I have tried everything you mentioned and just like you it makes things worse. We have been measuring my stomach because it is bloating out by inches! I have a Mayo appointment later this month but all of my hope in doctors has been lost. We are at a loss. I am so sick of this and I am only a teenager, I really want this nightmare to end.

Nightmares don't only happen at night, they happen in the day too :(

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Hello iclimb,

It is kindof funny, but there is some sense of relief knowing that someone understands me! I feel crazy sometimes because everyone has their opinions of what it could be or what I should try or maybe it is just all in my head. Well, I know it is not. The honest truth is that I do not understand medically what is going on - and the harder part, is that doctors do not know "exactly" what it is either. If you are like me, and do a lot of online research to try to figure out what is wrong...then you probably have read that GI issues are many times unexplained or considered a phenomenon. Which is frustrating, especially when you don’t feel well and all you want is to be fixed.
With that said, what I will suggest to you is push the doctors/hospital. However, I do understand that you may not know what to push for in the beginning. So, I will take you back in time (about 2 years ago) and let you know what I would have done differently then because of what I know now.
The first time I saw the GI doc, he asked me what tests I would like to have done or what I needed....I was confused and thought to myself "ummmm, you should know". So, we did a colonoscopy - turned out fine and a whole bunch of blood tests - all fine.
Since you have already done these, and you are still having the issues I would ask for the SITZ marker test first. This will really help you gauge if you are releasing bowel enough, not to be considered for Colonic Inertia. The SITZ marker pill is a capsule that has 24 rings that can be picked up by a regular extra. Make sure that you at least do a 5 day marker test. If you have more than 20% in your system at the end of 5 days that is not good, and not normal. You are considered highly constipated.
I have completed a 5 day marker test and more than 50% were still in my system (* which honestly was pretty amazing because I only had one small bowel movement, so the ones that got out had to be sitting at the bottom of my GI tract). That week was more horrible than usual, because you should not take ANY supplement or meds that make you do to the restroom. So I was absolutely full by day 5 and felt about 50 lbs heavier.
If you find that you still have the rings in your systems after that exam, the next tests that you should have/ask for are:
1) Small Bowel Transit - Radiology exam
This will make sure that you do not have issues in your small intestines, like a bacterial infection that may be slowing down the transit time.
2) Anorectal Neurophysiology exam
This exam, although very uncomfortable, will test your nerve conductivity of your sphincter muscle. (Blah!!) You want this test to come back "normal" because it will rule out your nerves not working properly
3) Anorectal Manometry exam
I have an appointment to do this one,so have not experienced it yet - however this exam is completed to evaluate patients with constipation and/or fecal incontinence. The test will examine: 1) Hirschsprung's Disease (usually in children), 2) fecal incontinence, 3) to find cause of anorectal constipation (anismus), 4) to evaluate if surgery is necessary to resolve the issue, and 5) determine baseline of anorectal function before surgery.
4) Defecatory exam
This test I also have schedule but has not been completed.
"Defecography, or evacuation proctography, is an X-Ray test that shows the rectum and anal canal as they change during defecation (having a bowel movement). This test is used to evaluate for disorders of the lower bowel that are not evident by tests such as colonoscopy or sigmoidoscopy". **I got that from a website, www.motilitysociety.org - ha ha

Soooo, after all these test have taken place, which I am on that road, they will determine that you need surgery or not. The surgery is called Colectomy (not a colostomy). It can be done for patients that have Colonic Inertia/Chronic Constipation.
Many people are scared of surgery, and really it should be the last resort - so I dont mean to frighten you and I am not suggesting this directly.
I only know from my own experience, that I am at this place - and I am anxious. I want the surgery, however I am doing everything the surgeon is asking of me first. All these exams will determine that surgery is the right choice, rather than jumping into it.
I am not scared because living the way I do is much scarier to me. I would have a miserable life. I am aware that I will be comfortable after surgery; I will have scares, recovery time, and learning how my new GI tract will respond to food. I am ready and hopeful, even with these things. And, you do not need your large intestines to live, and many people have done it and feel tons better.
What I hope in pray for is that there are no complications during surgery and that they can do it laproscopically. *you can watch it on youtube* I can’t stomach it, so I only see bits and pieces.
It is a long road, but if you know what to ask for maybe it will be faster. I have heard about the Mayo Clinc though and have heard that it is the best for these issues. I am hopeful that they will suggest these exams to you. I am going a different route through my insurance (not sure if I can mention the hospital) and I live in CA. I wish you all the best. Please write and ask questions whenever you like.
My best.
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These sentences came through funky, this is what it should read:

*This will really help you gauge if you are releasing bowel enough, AND to be considered for Colonic Inertia. The SITZ marker pill is a capsule that has 24 rings that can be picked up by a regular XRAY.

*I am aware that I will be UNCOMFORTABLE after surgery;

*What I hope AND pray for is

Also, I wanted to add that a Subtotal Colectomy is surgery where they remove most or all of your large intestines, and directly attach the small intestines to the rectum. They may leave some of your large intestines (like 6-12") to allow you a little time before release. Also, it has been found that if the doc only takes out the section of the large intestines that appears to be the cause, later the rest of the intestines goes bad - and surgery will need to before again. So, it is better to do an all or nothing kind of thing.

So, obviously, this is serious surgery...
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Hi Barbeezee,

Thank you so much for all this information. I really appreciate it. I did have the SITZ marker test. I had this test after the colonocopy. This was the first time that the doctors finally realized that it wasn't in my head but actually that my colon wasn't functioning right. I had three abnormal x-rays in a row. After twelve days I still I had 10  rings left in my colon. After this we scheduled an appointment with my doctor who performed the colonoscopy. She found out that my colon looked great in the inside but she knew I wasn't feeling or looking well so she had me take the SITZ mark test. She told me that something can "look okay but still be wrong." So at the appointment she told me that I had two choices: plan a) medications for the rest of my life or plan b) colectomy.

Plan A had to come first. I was on misoprostol but it didn't work. I just became more bloated so I stopped taking it. My doctor of course was not a GI specialist so she referred me to someone else to see in the mean time why we waited for a Mayo appointment. My doctor did not call Mayo herself so my mom and I had to work that out. We were able to schedule an appointment with pediatric GI on May 18. I am 17 years old so I have to be pediatric. This fact is okay with me.  

In the mean time I have just been living like I have been this past year. Until yesterday when I ended up in the ER because I had such a bad migraine and I was extremely fatigued. I also was hoping that a doctor could call the Mayo hospital and see if I could get in any sooner. Someone who works with the medical stuff told us that we would have gotten into Mayo sooner if a doctor would have made the appointment. This really pushed us over the edge because we had to be the ones to make the appointment ourselves.

At the ER the doctor did call Mayo and he found out that they might have to cancel my appointment because I am not 18 and too young for adult GI, but then they were throwing in my face that I am too old for pediatric! I just got a call now that they will see me. But for awhile there I felt doomed!

I was wondering if you had amenorrhea. This is were my constipation journey began. I was being treated for my amenorrhea from Endocrinologists. My hormones and thyroid has been checked numerous times and it all is normal. At my first appointment they did an x-ray and found out that I was constipated. I was literally told to take as many laxatives as I wanted to from my doctor. *we have now changed doctors* That appointment was back in July 09. Also I sleep with a fan aimed at my head because it because so hot when I lay down. But usually in the day I am cold. Are you having any of these symptoms too?

I know exactly what you mean by wanting the surgery. I would rather take the surgery than have to live like I am now. It bothers me so that doctors don't even realize that stuff like this is happening. The ER doctor never heard the term colonic inertia before and he is a doctor!

Thanks again for all the information. I really appreciate it. I will be praying for you too.
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Hey there, I'm taking a lil work break to read your message and write back to answer your questions. I have always been 'slow' but was too embarrassed to say I may be constipated. So I ignored it for years, but as the years passed I became more and more sluggish. When I tried to fix it with meds and supplements it has made everything a thousand times worse. Now my gi tract is screwy all day everyday, and is worse every single time I eat.
I do not have amenorrhea. I have always have had irregular periods and started when I was 13 or 14. I do have hemorrhagic cysts that the docs have found in my ct scans. We have caught them twice at 3.5 cms and both times they have ruptured causing me great pain. However it is a good thing that they didnot stay and get larger
I also have had multiple checks on my thyroid as well because even with exercise and diet, it is extremely hard to lose weight. All have come back regular.  I am currently 5'5" and 155' but I feel 200 lbs cause I always feel full and bloated. When I watch what I eat, exercise or eat very little I get down to 150lbs. All the effort for not much weight is frustrating.
Do u have weight issues at all?  
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I am glad that u r getting into the mayo clinic. When is ur appointment? The sitz marker test sounds like definite colonic inertia. I know it is super frustrating, the wait is unbearable somedays. I just try to tell myself, each day is one day closer to getting the surgery. But I literally cannot wait - as crazy as that sounds.

Also how much is your tummy bloating out? I am an apple shape: small waste, and bigger at the bottom. For the last year my wasteline has had 'skinny days' and 'fat days'....more fat days recently. I'm extremely bloated but I have not measured myself. My pants definitely fit snugger those days.
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When I was 14 I weighed 150 pounds. All I wanted was to weigh 140 because it matched the number 14.. I was weird haha  Anyways my family and I switched from regular milk to organic milk and also to organic chicken. We also stopped drinking soda pop a few years before I turned 14. And we all lost some weight. Our family eating habits were not bad or anything. We were one of those families that actually took the time to sit down and eat a meal and discuss our day. We still do it.  We are tight. All my life growing up I never had a food issue. My relationship with it was great. The only thing that bothered me was that my stomach always was bloaty; looking like I was pregnant.

When I was 16 I had dropped all my weight. I was down to 112 pounds. I was really surprised because I wasn't doing anything to change my weight. If fact I was eating more food. I was binge eating. This awful habit started and I couldn't understand why. I now had a love/hate relationship with food.  I had lost my period and the doctors were all calling me anorexic. I didn't look anorexic. I had a CT scan also. It just showed that I was highly constipated. I was shoving food down my face and I still lost weight. Turns out I have two mega allergies. I am allergic to gluten. This is why I never felt full. I am also allergic to cow's milk. When people are allergic to milk usually their stomach bloats. We put my constipation problem in the back of our heads. Just thinking that my blaoting would go away from being off of dairy. Well it never did. We found out we had a much serious issue on our hands. After months of being off of dairy and wheat I was still constipated. My colon was causing trouble.

The doctors even accused me of swallowing cotton balls to make myself feel full! How can I be anorexic and constipated. It is just another stereotype on teenagers. Right now I weigh 120 pounds. Some days it goes up. I have been measuring my stomach and a few days ago it was 36 inches, Today it is 34. I work at JC Penney's and all of my dress/work clothes don't fit anymore.

Have you ever heard of the product GOLYTLY? They make people drink it before a colonosopy? I didn't have that prep before my test I had the Osmo prep. In January I was in the UW Children's hospital. I was seeing a GI doctor and he admitted me after he looked at my x-rays. They were trying to clean me out by using GOLYTLY.  I had already consumed the basic 4 liters and nothing happened (this was back in Dec.) and I told them I didn't want to have anymore but they reassured me it would be ok. I had to have a NG tube in my nose all the way down to my throat for the GOLYTLY solution. I had over 36 liters in four days. And that junk didn't even clean me out. I knew why. My colon was obviously broken because it could never get stimulated by any products. My body just retained the liquid. I did pee and all, but I swelled pretty bad. The doctors sent me home because it was a Saturday and they said that they were down in staff for Martin Luther King Day.
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Dang girl! You have been through a lot, I am so surprised that it has taken so long for doctors to do something about it! I am so sorry for you. But it is really great that you have such a wonderful family and support group. It is really important. I'm 31 and not married, so I have my friends but it is not the same. My parents and brother are supportive however they have their lives to live. Who wants to hear someone ***** all the time that they don't feel good?!  

I have taken GOLYTLY and I hate it. The first time was the colonoscopy 2 years ago. I remember it cleaned me out but because I'm so constipated - I couldn't eat for 2 days before the procedure, then took the solution, then had a drink. After the procedure and when I started eating the same stomach feelings and constipated started right away.
I was given it again for camera capsule exam a month ago. It didn't clean me out as good as 2 yrs ago, and a lot of the fluid was left in my gi tract. I was extremely bloated and when I pushed on my tummy I could hear it in there.
It just appears that the retention of bowel and liquids has been getting worse as the days go by.

When speaking w my surgeon he asked if I really felt the need to surgery, as if to say 'is it that bad?' He even mention that the last time he did this surgery, the woman couldn't go for 10 weeks. Honestly I don't want to let it get that bad for me! I go a lil here and there with supplements, teas, or meds but 24/7 I feel badly. When I don't take anything its usually a wk to a wk and a half of nothing, but feel extremely full tummy and bloated. I still eat however cause my stomach is empty and hungry- but my intestines r full.
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So although I feel I may be at a different stage then some other people, I am ready for the surgery. Iused to be the person that always wanted to get out there, do something new and exciting and now I am the person that cannot wait to get home from work to put on my pjs and curl up in a ball, hoping to have a bowel movement. Its sad, really. And it is not the way I want to live.


When is your appointment? I hope they do what they need to do for you quickly and move forward. You sound like you have been through it all. And your right, doctors do seem to make it out to be that issues are all in our heads or self-inflicted. why can't they just believe you are telling the truth and want their help? That is what they are there for, right?

I think the 14/140 idea was cute, and not weird. My brain works the same way. Kit.  
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I know exactly what you mean. I used to rock climb and play the drums. (that is why I chose the name i climb)
I haven't rock climbed in forever and somedays I don't even have enough energy to play my drums. I feel like I lost myself and became someone new. I am not who I used to be, I just want to go back. My family is great even my extended family like aunts and uncles ect. At first I didn't want to tell them because it was embarrassing. I couldn't poop for my life. But it gets easier telling people whats wrong.

My stomach growls it gets hungry so I eat. (exactly like you were saying above)  In fact I kinda think eating helps because it pushes things through you know. Maybe it doesn't but oh well. My appointment is May 18th in Rochester Minnesota. I live in Wisconsin so it will be a road trip. I am packing my bags, I really hope they admit me. I would hate to have to drive back and forth. I am going to bring those exams that you talked with me about.
So is your surgery scheduled? I am wishing you only the best.
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Avatar_f_tn
Pretty much everyone in my life knows now and I have not been embarrassed anymore. Wanna talk 'poop' and I'm ur gal- haha - but I am a lil over it.
I have the same philosophy on eating...some days I eat more cause I think it'll pus it all through but it doesn't really work that way. I think it is just the stage of where everything is sitting.
So ur appt is next week! Good luck. I would call them and ask if they admit u right away, especially since u are coming from a distance. There have been plenty of appts I thought 'ok this will be the time they do something' and it wasn't so. They may work differently though for you and I hope they do! Please let me know the outcome and the decisions they make moving forward.
My surgeon says that I have to finish the last 2 tests before I can have surgery. I'm am anxious to move forward and a lil impatient but I am doing everything he said first. We did speak after the last sitz marker and he told me to prepare myself for surgery, research, and make sure I want surgery and the recovery that comes with it. It does sound a bit scary, but as I said before I couldn't image living the way I do forever-and it get worse. That would be even scarier to me. So most likely I will have my surgery schedule in june.
I think its awesome u play the drums and have an outlet. I used to be a musician years ago and my brother played the drums too. Hopefully you can get back to rock climbing once this is past you. I plan, as well, to get back to life when this is over. It would feel like a second chance and I plan to do all the things I wish I could right now.
I wish you the best too. Good luck my friend and please kit with all your upcoming experiences.
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Avatar_f_tn
Hi Barbeezee,

Sorry it took me some time to reply. I am focussing on getting school done before Mayo. I go to an online high-school. Going to an online school has really helped with my condition and all. I will let you know more details after the appointment. June is coming soon! I defiantly know what you mean by second chances. I will talk to you after my trip :)
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Avatar_f_tn
No worries, I know how things get busy! Good luck with getting all your school work done. Also, your appointment is this Tuesday! I am excited for you, as they should be able to give you some answers and/or closure.
Monday is my Defecography Test - which I know will not be "fun", but I am excited because that means one more test down.
This week has been a tough one. I took some laxatives and they didnt work, so I feel worse. It really is an on going mess!Looking forward to some better days ahead.

I hope they say surgery is the answer for you. If so, we will probably be having it done around the same time, and we can give each other support from afar.

Good luck with all. :)
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Avatar_f_tn
Aww thank you

I hope you can sleep tonight. Everyone always says, "get a good nights rest before your big day" but we all know that usually never happens. I really do hope you can get some sleep and have sweet dreams though. Let me know how it all works out tomorrow.

Laxatives are no fun. Right now I am just taking a colon cleanse from Wal-Mart. I bloat less on  colon cleanses than on laxitives. It's called 'Colon Clenz' and it comes in a white and tan box. It's my sixth colon cleanse brand. Things work for a bit and than they don't. At first I thought I found something that would work and then the next week I realize that it doesn't last forever. I bet you know how that goes. Remember to lay on your left side when you sleep.

I am wishing the same thing. I am hoping that at Mayo I can find a doctor that will have a clue about what is going on and know exactly what to recommend. That would be really neat if we had surgery at the same time. I say we write a book on our lives ha ha

talk to you soon :)
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Avatar_f_tn
Hey there, I wrote this morning from my blackberry, and when I went to post it - it didnt go through! Boooo! So I'll write now :)
So I had a good night sleep last night. The tests are only a step, and even though it means I am getting closer, I dont get excited. I think the night before my surgery may definitely be a sleepless night with nerves and excitement all rolled into one.
So, today was the defactogram exam - no fun! They make you drink a contrast and an hour later they put 3 tubes of (toothpaste consistancy) contrast into your rectum. yuck! Then you have to sit on a plastic toliet seat that is set up next to the xray machine. I had 2 doctors in there and the RN watching me poo. :( They had me push without letting it out, hold and push up to keep it in, and then push it all out. It took me 2 tries. I was so embarrassed but I know they do it all the time.

I think that since I was able to release it all, even though it took 2 tries, is a good thing - meaning, I do not have pelvic floor dtsfunction. This means after the surery my rectum will work well enough to have release and I will not continue to have the same symptoms.

Tonight I feel pretty blah, I have residual contrast in my system that has made me highly bloated. So, I have decided to drink a lot of miralax to flush it out hopefully. One of the doctors along the way told me that miralax is the same stuff as GOLYTLY but a smaller dose. So, I am 5 - 8oz cupd down and not much has happened yet. We'll see.

Tomorrow is your big day!!! I am very excited from you - and hope you get some rest tonight. Please let me know how it goes and your surgery date if they give you one. It would be very neat to have the surgerys at the same time.

Ok, back to watching my Laker game! Highlight of the day, I hope they win!!! Have a great night, KIT friend.
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I am so, so sorry that you had to go through all of that. I am glad that you have the results from that test. It stinks to have to wait for them. I had to do a couple of anal/rectal exams too while I was at Mayo. I was not looking forward to them at all but I knew that if you could do it so could I. I bet you didn’t even realize it but you helped me.  

Going to Mayo was a disaster. From the beginning we didn’t know who my doctor was, we didn’t know if I was going to be pediatric or adult. Turns out I was adult. There is nothing wrong with that. We go into the room and my GI doctor comes in. He asked a few questions, but he didn’t seem too cleaver to me. And I have seen a lot of doctors…
I was asking him about colonic inertia and chronic dysmotility and he said we would get to that after I take his recommended tests. He said that he thought my pelvic floor was all messed up. He said I was stressed out and the muscles in my anal cavity weren’t moving because they aren’t relaxed. Like hello I am way positive about all of this. I didn’t appreciate him poking at my bottom and all. I tried telling him that my anal cavity works fine. He didn’t believe me. So I took their test and proved him wrong. My anal cavity worked fine. I asked the technician after the one test was done how I did compared to a person who had a normal function and she said I was just like my mom. I had no problem; normal function. So the nest day we had to see our GI doctor again and have him look over the tests. He came in and said that my test wasn’t black or white it wasn’t clear. Some was normal and some were higher than average. Well how in the world is that bad? I asked him if there were any other tests that I could take and he said no very sharply. My mom was like this is it. He was pushing his agenda and his idea into our heads. It was like he was trying to sell us something. If he really cared he would have tried harder.

Why we were at Mayo (I went with my mom and aunt) we saw an endocrinologist about my amenorrhea. The only thing he has found so far is that my pituitary gland LH is at 1.3 and the average is between 1.6 and 12.4. It had a small flag but they didn’t seem worried. I also saw a neurologist because I have been having headaches and Tylenol and ibuprofen doesn’t cut it so I am taking (with all those) Aleve. I never have complained of headaches like these before. I have been getting two a day. The doc was saying that they really are migraines. He ordered an MRI of my brain. I did great and the doctor looked at my brain and called it beautiful. He was real sweet. A nice change to the past events. This was my first MRI. It went great. I liked it a lot more than my CTscan I had back in November. The neurologist is thinking that the migraines are caused from the constipation or the amenorrhea or both.

So we left empty handed. And I really am a mess my dear friend. I am constipated up to my gills and I don’t know where to turn next. I know something is wrong. I have constipation and amenorrhea. My stomach is bloating out. This is not right. I thought maybe you could mention me/my situation of constipation and amenorrhea with your doctor or anyone else. I really appreciate it. Also I will take your advice. Thank you so much. I really appreciate that you talk to me. My messages probably make my grammar look sloppy. I really am a smart kid. I am just spitting everything out all at once you know.
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Avatar_f_tn
Hello there my friend, I am sorry I havent gotten back to you until now. I know that just knowing someone is out there to vent to and confide in, is important during these times. I was at a wedding this weekend, in Central California, so I went on a mini road trip. The wedding was absolutely beautiful and I did have a good time...however I was so bloated and was not able to go to the restroom once. I got home today and was able to have some release, but still my stomach is bloated and sticks out.
I am disappointed with your outcome at the Mayo Clinic, I believed they would have been much more helpful to you as they specialize in this area. I know those rectal exams are uncomfortable and embarrassing but they will be worth it in the long run. I realize you must feel defeated at the momement but do not loss hope, keep pushing forward. We will have to figure out a Plan B for you now and get you to the place you need to be. I believe someone will help you.
I have some questions about your visit...What were the names of the 2 exams they completed for your constipation/colonic inertia? Did you bring the names of the exams I have done to specifically ask for those? What did they leave you with as next steps? Did they say you will be coming back? or did they give you suggestions on how to move forward?
As I was reading your post I was getting pretty frustrated at how the doctor was handling the situation. I wish was there to tell him, "No, now you listen to me. If you cannot determine what is the matter with the outcome of the tests you wanted to do...you will do all the tests possible until you can diagnose her!" They should not have left you with nothing to move forward with. Did they?
Also, have you and your mother already started talking about what steps you will take now? Does the hospital you are with right now, do colectomies? Or can you go back to your specialist to be referred to another place that specializes in GI?
I am very sorry that your trip did not result in better news. I give you big hugs through this post, and I want to say please do not lose hope. I know how you feel, and I know it hurts. You want someone to believe you when you say you know you are not how you are supposed to be. You just want someone to hear you, believe you, and help you. I believe you will get there.

Tomorrow is my appointment with my GI surgeon to discuss my results (all tests, except one that is scheduled on June 2nd). I will bring up your situation too and see if he has any recommendations. I can also write my GI doctor and see if he can give me any suggestions for you - if there is a connection with the headaches, constipation and the amenorrhea. Have you done any research online for that?

I am hopeful that he will scheule my surgery. I just want it. I am so over the waiting, the exams, and being uncomfortable all the time. I am tired of complaining!! It freakin *****. Easiest way to put it. I want the chance to be happy again.... I know  you know exactly how I feel. We need to get the doctors back on track for you so that we can get you to a place where they can fix you and not just send you away.

Well, I will leave you with this. I can tell that you are a very intelligent girl...so dont worry about the typing. My thoughts get ahead of my typing a lot so I know how it goes. Also, I am glad that I help you - dealing with this it is extremely helpful (to me as well) to have someone out there that "gets" what you are going through. So, friend, you help me too! We are here for each other and I am grateful.
Respond when you can, and I will let you know what the doc says.
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you sound exactly like me!!! I have had a ton of tests and tests.. you can read my story here : http://www.medhelp.org/posts/Gastroenterology/Tortuous-Colon/show/1535243?personal_page_id=2196881

I just had sitz marker xrays done at the end of October and my results came back significantly abnormal. I meet with a colon surgeon on 11/23 to go over my options. Last I talked to the surgeon before I had the xrays he told me if my colon showed up that it was not working he could remove my large intestine and connect my small intestine to my rectum and I would not have a bag.

I hope that this surgery will not effect my every day things in life.. including my job. Did you end up having the surgery??
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1704915_tn?1357604854
Amitiza made me sooooooooo sick. I missed days of work thinking I had the flu and figured out it was actually the medication so my dr took me off of it,
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I COULD NOT BELIEVE, WHEN I WAS READING YOUR STORY, IT IS THE STORY OF MY LIFE. I AM THE ONE WHO ASK SURGERY BECAUSE I CAN NOT HANDL IT NO MORE. I SUPPORT YOU MY DEAR FRIEND, ONLY SURGERY CAN CHANGE OUR LIFE.
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1704915_tn?1357604854
My colon surgeon was in complete shock that the doctor I was going to before didnt recommend me to him and I went there on my own!
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1704915_tn?1357604854
.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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1704915_tn?1357604854
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So had a special doctor visit after hours with some of the staff (gi specialist and colon surgeon) at a hospital I have been having all these tests done at. They talked to me about all the results and all that I have told them and they feel I have 2 issues going on

1.) Colonic inertia = constipation/slow transit
2.) SIBO/IBS

they told me that the only way to be sure if the large intestine is working is to do a temporary jpouch for about 4 - 6 weeks. Test the waters and see if I feel better without use of the large intestine. If I do then we know the large intestine is to blame and they can remove it. They told me that they would remove the jpouch and the large intestine and then connect my small intestine to my rectum.

Did anyone else go through this before having their large intestine removed. It means 2 surgeries for me.
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I had regular bowel movements until about 3 yrs when I had a complete Hysterectomy! Little by little, over time I started getting constipated. I just had a colonoscopy this last week. Already I'm experiencing bloating and that sickening full feeling. I'm trying a combination of miralax, kiwi, and morning star products.(veggie products) Gonna try and eliminate meat all together. I often wonder if alot of mine is the stuff they put in our foods! I have a follow up appt on monday. I stay tired and sick all the time. Right after I eat it seems I get sleepy. It's terrible! I never imagined I could feel like this because of the lack of bowel movements. And in the last month it has gotten so bad that my face stays broke out! Before my colonoscopy I would go up to 4 days without any movements. I started using enemas. It gave me a little relief. I knew I couldnt keep doing it cause it had to be bad for my colon! Only been 3 days since my colonoscopy and I woke up feeling like I was gonna throw up! And when you wake up feeling like that you certainly don't want to try and eat until that feel subsides. But I'm not off to a good start. Oh, and they didn't find anything wrong. Whatever! Something is wrong!!
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2827584_tn?1340583296
It sure sounds like your sigmoid colon has gotten stuck down in the pelvis due to adhesions from the hysterectomy. The worst adhesions that we see and the cases most likely to require operative intervention are following GYN surgery due to the intestines flopping back down into the operative bed and getting adhesed.
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Avatar_f_tn
I think that this may be what is going on with me ever since my hysterectomy 14 years ago. I have a sense of things being tethered down on my left pelvic side and have difficulty evacuating as well as a sense of swelling. I think it could be vaginal cuff adhesion and maybe even an abscess. I have gone to gynecologists who did a pelvic exam and lab tests and they insist they cannot find anything. Although one of them did say that I probably had vaginal cuff adhesions but she trivialized their importance and made me feel like a whiner. I also get left-side vaginal pain and vulvar burning.

I have gone to physical therapists who all said I had a lot of tough adhesions, including the sigmoid area which I think could be causing my difficult and incomplete evacuation issues where I feel like I'm never done. I think that things get stuck both in the rectum and sigmoid area.

The problem with adhesions is that they do not show up on imaging tests. And it is pretty much impossible to have an exploratory lap without enough evidence, even though I do have a history of several surgeries and in fact one of them did mention that adhesions were seen- this was on the report for a right adrenal gland removal a few years ago.

Of course, most people think that if I had post-hysterectomy problems then the gynecologist who did the surgery shoud have followed up with me but once I had the surgery he pretty much dropped me like a hot potato and refused to sit down with me for a discussion as to how I was doing.
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2827584_tn?1340583296
Adhesive issues affecting the colon are not in your gynecologist's scope of practice. You would need to see a general or colorectal surgeon. My high school biology teacher had a saying that seems appropriate here - "You only see what you know".
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Oh cool it's Dr. Watters!  Small world.  You took out the gallbladder of a partner of yours (or previous partner), who then took my gallbladder out six weeks later!  Then he told me to get off gluten because I have Celiac disease, and he was right.  I saw primary docs every year, but a surgeon gave me my most important medical diagnosis ...  over the phone.  

How nice of you to help people here.  
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2827584_tn?1340583296
Thank you for the kind comment.
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Avatar_f_tn
Barbeeze  and iclimb  what was the outcome!?
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Avatar_n_tn
y name is Cathy, I have hdtouble with my colon all my life.Last year I wen hrough a series of 6 tests!!!I can never go to the bathroom wihout something!! and now nothing works!! Thinkig about sugery, ut what kind???
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Avatar_m_tn
natural supplement called Ichol plus every time you eat will help with your troubles.it equalizes the stomach acid to break down the food before the intestine and stimulates the bowel contractions.
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Avatar_n_tn
I have HD and I simply can't poo. I want surgery to make it all better. Do you think it is a good idea or should I just stay constipated? I am only young so how do I tell my nan and pa that I need surgery? They don't understand what it is like. I want surgery
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