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CFS and colonic inertia?

Discussion in 'The Gut: De Meirleir & Maes; H2S; Leaky Gut' started by viks, Sep 8, 2011.

  1. viks

    viks

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    Hi I am in the uk and found this on a google search. I have ME/CFS and have also been diagnosed with colonic inertia and wondered if the two were connected. Bascially the bowel has given up and the surgeons here have suggested I have it removed..a subtotal colectomy, where the large intestine is taken out and the small intestine and rectum will be attached together. Obviously I am scared about this and wonder what affect it will have on my CFS but am tired of my stomach problems too.
  2. alex3619

    alex3619 Senior Member

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    Hi viks, I don't know for sure if the two are connected, but I seem to get this problem sometimes for a few days, and it is known that the entire gastric tract seems to be slower in many of us. I would suggest that you need your gut bacteria profiled, and H2S and LPS levels checked before proceeding with surgery - there are other options if you find abnormalities in any of these three things. Bye, Alex
  3. ukxmrv

    ukxmrv Senior Member

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    What have you tried for this Viks?
  4. Nielk

    Nielk

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    Vicks,

    DO NOT DO THIS SURGERY!!!!!!!!!!!
    First of all. I think the majority of people with ME have this problem. There are so many ways to remedy this WITHOUT surgery. I would first try everything suggested either by a naturalist or alternative practitioner. If that didn't work, I would go to one of the CFS specialists who deal with gut issues.

    Previous to ME/CFS, I suffered from Crohn's Disease. I took large amounts of steroids and other medications to keep the inflamation of the Ileum down. Periodically, I would have flare ups that sometimes caused complete blockage and was rushed to the hospital. This happened about 20 times at least. Each time, the surgeons in the hospital were sharpening their knives and were trying to convince me that the best solution is to cut the inflamed part of my Ileum and then I won't have to worry about it anymore. I was lucky that I had an excellent GI doctor and he knew that 95% of cases where they do this operation, the inflammation comes back in a different section of the colon. When I was hospitalized, he would put me on mega doses of steroids by I.V. and I was lucky that each time it worked and I was able to avoid the surgery. I heard of so many stories of patients who have had multiple surgeries with this and eventually had to have a colostomy bag attached.
    If your only problem is inertia of the colon, there are supplements you can take for that. For example I take daily Dr.Schultze's Intestinal Formula #1. It promotes movement of the colon. I'm sure there are many other treatments on the market. I would try everything first. If all else fails, I would go to two other doctors for second opinions before I would undertake such a major operation.
    Best of luck to you.
    Nielk
  5. Wayne

    Wayne Senior Member

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    Surgery for Colonic Inertia

    Hi Viks,

    First of all, welcome to the forum. Second of all, Nielk has given you some very good advice as far as I'm concerned. DO NOT HAVE THIS SURGERY!!!!!!!!!

    I've also had a lot of GI tract problems, often severe. For years when I was even more chemically sensitive than I am now, any kind of environmental exposure could completely eviscerate my peristalsis function (as in total paralysis). This could last for days, and sometimes weeks. And when it did start to come back on line, it was very sluggish and inefficient.

    Obviously, this is a dangerous situation. But I sought out natural remedies, and have found a variety of gentle, supportive therapies that has allowed me to essentially keep my GI health in reasonably good shape. This included daily coffee enemas for a number of years, and these days I do aloe vera daily retention enemas. I also drink kefir daily and do a number of other things. And my colon health is far better than it was 20 years ago.

    I always look forward to the day when my health improves, and I do not require these kinds of therapies. But in the mean time, they work, and they are far less of a burden in my daily life than if I were to have had surgical intervention. Surgeons do what they do best; surgery. They're generally unaware of alternative therapies that can alleviate the need for such a radical approach.

    I would strongly urge you to explore the many different options that are available to you before giving serious consideration to having this surgery done. You've not written anything which makes me think this is an urgent emergency situation. Also, the amino acid l-gluatamine can do wonders for some of the most intractable GI problems. So much to explore and experiment with. All the best in whatever you decide to do.

    Wayne

    ETA I notice you say you're tired of stomach problems. Just want to mention that having this kind of surgery could very well add to the problems you're experiencing. And once it's done, there's no going back. It just seems so advisable to try other things first.
  6. viks

    viks

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    Hi there. Thanks for the replies. I think I have tried just about everything. All laxatives diet etc. I basically have to take laxatives most days and use glycerin suppostories to go and can spend all day in the loo and am bloated tired etc. My surgeon does say that in 95% of cases that people are heaps better and go nornally to teh toilet 2 or 3 times a day. I was worried it would be 20+ times a day but he says not in his experience. I also had anismus outlet problems.

    I'd probably advice people teh same not to have surgery but I have read of people feeling loads better/getting there lifes back and this makes me want it bad. Can it be any worse than it is now? this is a 50% life with the stomach probs alone. The thought of battling and taking laxatives forever and the situation getting worse makes me just want to go ahead. I am 42 and spending loads of time in the bathroom, the idea of a cure...hmm...I just dont know. I need to talk to someone who has had this done.

    I've tried diet, lazatives. fleet, enemas, fybrogel, ducolax, lactulose, supreme magnesium, milk of magnesia (all U.K stuff) but I alsways need suppostories to go no matter what I take ....which is the lesser of two evils I wonder?
  7. aprilk1869

    aprilk1869 Senior Member

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  8. madietodd

    madietodd Senior Member

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    I just started having this problem about 8 months ago, and can keep everything moving with 500mg magnesium am and 500 more at bedtime, plus fresh vegetable juice (a zucchini or a cucumber, 2 small carrots, 2 cloves garlic, half a bunch of celery) morning and night. I don't know how important the garlic is - I add it because I have candida.

    I'm not saying this would work for anybody else - who knows? - but I vote for continuing to experiment, if you get some new ideas here.

    Best of luck

    Madie
  9. richvank

    richvank Senior Member

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    Hi, Neilk.

    I don't know if Crohn's is still an issue for you, and I don't remember if I've posted this to you before, but if Crohn's is still a problem, I suggest that you check out my late friend Dr. David Gregg's remedies for Crohn's at www.krysalis.net. They have helped a lot of people, including my late father-in-law. The testimonial emails that Dave posted on his site (with permission) are for real.

    Best regards,

    Rich
  10. richvank

    richvank Senior Member

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    Hi, viks.

    I reposted this from another thread, and added another statement to it:

    Hi, viks.

    Before having your gut plumbing modified, you might consider trying the methylation treatment for lifting the partial block in the methylation cycle in ME/CFS. This could help to restore your gut function, since the neurotransmitters that normally control peristalsis of the gut are affected by this partial block. You can find more information on this in my documents, by clicking on Wiki at the top of the page. and then on "General Wiki Pages." Testing and treatment are discussed in part 7, but the background and rationale are on the earlier pages.

    By the way, I'm writing as one who has had part of his colon and rectum removed, and the rest connected back together. I don't have ME/CFS, but I did have colorectal cancer about 13 years ago. So far, so good, but I can tell you that the modified gut design does not work as well as the original! So I think it's worth trying some other things before making a permanent change of that sort. I would say, based on my experience, that your surgeon's estimate of how often you would have to visit the bathroom after this type of surgery is very optimistic!

    Best regards,

    Rich
  11. viks

    viks

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    thanks again for the replies. As some of these things are not in the UK i will have to look them up as I am not familar with them.

    Rich..I hope this isn't to personal but how often would you think I might be going to teh loo afterwards...will it be a case of always wondering where the nearest bathroom is? I'm hoping for better 'plumbing' not a whole new set of problems :/
  12. maryb

    maryb iherb code TAK122

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    Hi viks - just to say I totally agree with what the others have said, whilst your surgeon may see a lot of people with colonic inertia how many have ME? It is a common problem with this illness, for me too, its may be just a question of finding what works for you, did you have problems before getting ill? Looking back constipation was always a bit of a problem for but my lifestyle then didn't help.
    Really hope you finds something that gives you relief without surgery, kefir, probiotics, magnesium definitely all help me, occasional laxatives as well. I will give the methylation protocol a go too when I have had all my amalams removed.
  13. viks

    viks

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    Then again ...what if the colonic inertia is causing a lot of the M.E symptoms. It is a bit more drastic a condition than just everyday consipation. Surely having an immobile bowel would cause tiredness/ headaches/aches and pains? It's a double edged sword isn't it?
  14. Nielk

    Nielk

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    Hi, Neilk.

    I don't know if Crohn's is still an issue for you, and I don't remember if I've posted this to you before, but if Crohn's is still a problem, I suggest that you check out my late friend Dr. David Gregg's remedies for Crohn's at www.krysalis.net. They have helped a lot of people, including my late father-in-law. The testimonial emails that Dave posted on his site (with permission) are for real.

    Best regards,

    Rich

    Thanks Rich,

    Yes, I remember, you did send me this link a while back when I mentioned Crohn's. Thank you.
    Thank god for the past 15 years, I have been mostly asymptomatic. I still have it I know because my GI Dr. when he did my last colonoscopy, he took a biopsy from it and it still shows that it's there. (I don't think anyone really gets cured from it) I don't know if I would have been able to handle both Crohn's and ME at the same time.
    My best,
    Nielk
  15. richvank

    richvank Senior Member

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    Hi, viks.

    I certainly don't mind telling you about my experience with this, if it will help you to make a decision. I had about 10 inches removed from my lower colon and rectum because of colorectal cancer. I had the option of an anastamosis (splicing it back together) or a colostomy (an external bag that one has to care for and empty). I chose the anastamosis, because I wanted to be more "normal." It was not possible to control things for quite a while after the surgery, and I wore diapers. Eventually I was able to control BMs more normally. I do have to be careful about diet. Too much or too little fiber cause too many BMs or blockages, respectively. Peppers and other spicy foods cause irritation. One loses one's waste storage capacity with this type of surgery. I usually have to get up about every 2 hours at night to visit the bathroom. During the day, on a good day I can go for more than an hour between trips. On a less good day, it can be much more frequent. I have not been able to pin down what controls whether the days will be good or bad, and thus to control this. Over the past 13 years, I have had probably 15 or more ileuses (small bowel obstructions). This is accompanied by severe abdominal distention and pain from the stretch receptors in the gut, vomiting, and hypovolemia of the blood, causing disruption of electrolyte levels and blood counts. Not a lot of fun. Rarely, these will clear on their own in a few hours. Most often, I have to go to an emergency room, and am usually admitted to the hospital for 3 days or so. The treatment is a nasogastric tube and an I.V., and just waiting until the blockage clears. This usually happens within a few hours.

    All of this does impact one's life. There are some things that I just can't do, that I could before. I am thankful to be alive, though, and I have been able to work around this situation to do most of the things I want to do. Fortunately, most of them can be done while keeping a bathroom within fairly close range. If not, there are always diapers. It takes some attitude adjustment (maybe doing a little cognitive behavioral therapy on onself :)-)) to learn to live with this situation, and it helps if your family is understanding. Sorry if this is too much information, but I want to give you an honest picture.

    I would consider other alternatives if I were you, and as I posted, I think that looking at your methylation situation could pay off.

    Best regards,

    Rich
  16. viks

    viks

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    Thanks so much Rich. What a lot to go through. Bless you. With your surgery it was life threatening so you didn't have much choice and this is so for people with your condition and severe crohns etc. My friend has severe crohns and has no large intestine and a bag and it was a life saver for her and no pain so she recomends it wholeheartedly. I say that having a bag would be better than my situation but I bet if I woke up with one I would be horrified and it would take a massive adjustment.

    What you have wrote her, is my worst fear. My surgeon says that won't happen but what I want to get away from is all the time in the toilet. I haven't eaten hardly a thing for the last two days but still have been 9 times today using suppostories etc ...this is what I want away from not more time in the toilet and getiing up in the night . I thank you for being so honest as my surgeon says that it will be a little more waterty but properly formed?? hmm. I may ask to speak to people who have had it done that he has operated on first. Very few will be for my condition so and more so for life threatening conditions , so asking them if they felt they made the right decision isn't applicable because it was the only decision they could take....

    Because it is a rare condition it is hard to find someone who has had this surgery , what i have found on the net is a lot of people who say it is the best thing they have ever done, some say they have never felt so well.... and this makes me say get rid and others that say they can't eat much now or that they have other problems. I guess that most people who it has worked brilliantly for will not be posting on the net because they will be too busy out there living life. This is what i want, soooo badly. If I don't have it done and struggle as I do I may always wonder if surgery would have helped...if I have the surgery and it makes me worse...well to be honest because it isn't life threatening and more a quality of life decison rather than a life saving condition...I don;t think I could cope.

    I really admire you for all you have gone through and for sharing with me. It has been so helpful, if scary . Do you know of others who have had this type of surgery and struggle like this. ?

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