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

[barbeezee]

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.

[patient915]

Have you had a colonoscopy?

[barbeezee]

Yes, I had a colonoscopy and an upper gi and both were normal.

[patient915]

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.

[barbeezee]

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.

[barbeezee]

What have the doctors said for you? What r ur next steps?

[patient915]

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.

[Morecambe]

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

[barbeezee]

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.

[barbeezee]

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.

[barbeezee]

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.

[barbeezee]

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.

[Morecambe]

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

[crallen]

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.  

[Morecambe]

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

[crallen]

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.

[patient915]

The doctors have mentioned that I might need surgery eventually but I'm still looking into some things.

[barbeezee]

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.

[barbeezee]

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.      

[barbeezee]

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.

[iclimb]

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 :(

[barbeezee]

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.

[barbeezee]

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...

[iclimb]

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.

[barbeezee]

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?