Slow transit constipation and surgery

Posted by januaryjane @januaryjane, Thu, Aug 22 1:03am

Hi, I have slow transit constipation and Ive tried everything with little help. Amitiza, linzess, trulance…diet modification, pelvic floor therapy…etc. It affects the quality of my life every day. It started at 18 and im almost 34. I cannot maintain a job or even finish school. Just saw a new gastro and he wants me to "drag my feet" on surgery. I know it is not to be taken lightly but i want a life, while im rather young. Just really stressed and would like any thoughts or info that would help. Thanks.

Hi, I just wanted to add i cut back on stimulants, now stomach is calmer but the constipation is worse. I got put on them last year, but am afraid of everyday use, even if a Dr says its safe. Im getting a sibo test in the mail, so we will see what that says. My constipation just aggravates my body and inflammation. This weekend my Epstein barr virus reactivated, i missed my pelvic floor appt, just makes me so frustrated. Im just lost as what to do. Sorry this may seem like a blah, blah, poor me, but i have little support, and all of this is driving me mad. Ive in the past taken breaks, try not to think about it, free myself of appointments. I might get a little rest but that is time ive lost not working on this. Ive had most of my young adult life being plagued by this. I want an independent life, but my body is fighting against itself. Burn out is here again.

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@fourof5zs

The Mayo does not accept my insurances (I have Medicare and Tricare for Life) … but Mayo is working with them. My part to pay is just a bit more than what it would be if they did accept my insurances. Talk to someone in financing at whichever Mayo Clinic is nearest you. Some of the doctors and NPs accept insurances that the Clinic and hospital do not. My NP accepts at least one of mine. My hubby handles all that so not sure if it is just one or both she accepts.

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Wow, that is wonderful that they work with you and it is affordable!
My insurance did not cover Mayo, but I was able to change insurance plans to one that did. I had to wait a year, but the insurance ended up not costing me any more than the prior plan I had, and the coverage for Mayo has been excellent (also better coverage at home !).

Is something like that an option for you, @januaryjane , changing insurance plans?

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@elle1233

Wow, that is wonderful that they work with you and it is affordable!
My insurance did not cover Mayo, but I was able to change insurance plans to one that did. I had to wait a year, but the insurance ended up not costing me any more than the prior plan I had, and the coverage for Mayo has been excellent (also better coverage at home !).

Is something like that an option for you, @januaryjane , changing insurance plans?

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@elle1233 hi i knotice you were able to find insurance that works good with Mayo. If its not to personal could i find. Out what you switched too. Im having issues with insurance myself and am researching other options. Thanks

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@elle1233

Wow, that is wonderful that they work with you and it is affordable!
My insurance did not cover Mayo, but I was able to change insurance plans to one that did. I had to wait a year, but the insurance ended up not costing me any more than the prior plan I had, and the coverage for Mayo has been excellent (also better coverage at home !).

Is something like that an option for you, @januaryjane , changing insurance plans?

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Thought this site might be different, but my original post gets lost in only a few replies…..Now that I know this site is of no help, I'm out.

Liked by elle1233

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@januaryjane

Thought this site might be different, but my original post gets lost in only a few replies…..Now that I know this site is of no help, I'm out.

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I hope you stay @januaryjane . I have been thinking of you and worrying about you. Thank you for answering my questions, and I you top on my list to get back to. I am working as a 24/7 caregiver for a family friend with Alzheimers disease; usually 6 days a week. I am also sick with my GI troubles. I just got back from a week at Mayo, drove right from there to her house last Friday night and will first go home tomorrow morning. It is all – consuming and I have little time to myself and to get on the computer, however, it works with my problems and I am happy to be able to help. anyway, my point is, I'm very tired and when I have some time I have to rest, so I get behind easily, it's 3:51 am now, first time I've been able to get online all day. I have to get some sleep. I hope you'll at least check in, I had some thoughts I'd like to share, and it seemed like you got responses from many people.

I think others are likely also busy and/or sick and so it might take some time to get answers, but I would say this forum is much more active than some others I tried. I'm a little disappointed my Dx (well one of them) got moved onto a thread that hasn't been active in years, where no one will see it, but if you can get your post to be current like yours, I see them getting a lot of traffic! Hope you'll at least check in and read, even if you don't want to 'talk'.

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@januaryjane

Thanks, ill look into it. Im on medicaid, so no idea how that would work.

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@januaryjane , I have no idea how all the insurance works. I am blessed to have a husband that takes care of all that. I do know that The Mayo Clinic accepts patients with no insurance. They accept donations for specifically that and some specifically for their research. Just call whichever Mayo Clinic you are going to. Numbers are at their site. They will answer you questions on insurance and will tell you if you are eligible for an appointment. Sometimes they turn down patients for various reasons, but not for how or if you are able to pay.

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@januaryjane

Thought this site might be different, but my original post gets lost in only a few replies…..Now that I know this site is of no help, I'm out.

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@januaryjane Our post get mixed in with other seeking help or just wanting to vent. I am like elle1233… I am busy and may be days before I can get back on here. I take care of my 91 year old mom. She had dementia and heart problem and other things… she gets confused a lot and she cannot walk much with her walker. Wears me out physically and mentally. I really need to go back to the Mayo, but I have no one to care for her nor can we afford respite care. Tried to get her into nursing home and that did not work out and have tried for hospice care, but she is not to that point yet.

Many have similar problems on here. Administrators try to keep topics together. If you need to find a specific comment you made just click on your account and you will be taken to your comments.

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@fourof5zs

@januaryjane , I have no idea how all the insurance works. I am blessed to have a husband that takes care of all that. I do know that The Mayo Clinic accepts patients with no insurance. They accept donations for specifically that and some specifically for their research. Just call whichever Mayo Clinic you are going to. Numbers are at their site. They will answer you questions on insurance and will tell you if you are eligible for an appointment. Sometimes they turn down patients for various reasons, but not for how or if you are able to pay.

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Please be aware that Mayo now prioritizes privately insured patients over those that are Government insured—e.g. Medicare and Medicaid. In the specialties that are heavily in demand (e.g. gastroenterology) this means that if you are on one of the government programs and are anew patient, it is highly unlikely that you will get an appointment unless your condition is something very complex and unusual. This is no secret. The CEO announced it a couple of years ago.

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@jackiem95

Please be aware that Mayo now prioritizes privately insured patients over those that are Government insured—e.g. Medicare and Medicaid. In the specialties that are heavily in demand (e.g. gastroenterology) this means that if you are on one of the government programs and are anew patient, it is highly unlikely that you will get an appointment unless your condition is something very complex and unusual. This is no secret. The CEO announced it a couple of years ago.

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This is what their website says: https://www.mayoclinic.org/patient-visitor-guide/billing-insurance/insurance/accepted-insurance/medicaid . This is what is says one self-pay: https://www.mayoclinic.org/patient-visitor-guide/billing-insurance/insurance/uninsured-patients

I recently received a letter from the Mayo Clinic asking for donations to help other patients in need financial help. So I assume they have some exceptions to the rule. Can the patient be helped in the area they live.. is it a rare condition.. life threatening? I'm sure much is considered.

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@januaryjane

Thanks, ill look into it. Im on medicaid, so no idea how that would work.

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Colectomy is a major surgery and I understand how miserable you are but it's not always the best answer. Please get more opinions. I have had a colon resection due to a bowel obstruction caused by a congenital bowel malformation– a rotated cecum which I never knew I had until the obstruction. I had 18" of colon removed. I did have chronic constipation before the bowel obstruction occurred but had it under control (mostly) with magnesium capsule supplements and high dose vitamin c. It has taken 3 years to really recover– very hard. There is a closed Facebook group on post colectomy pain and problems. Several of the folks on the board had colectomies due to chronic constipation and are worse off now. Hope you get better and find a solution. It is truly frustrating and can be disabling.

Liked by elle1233

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@januaryjane

Thank you so much. Right now im not responding lengthy, not feeling the best, but wanted to say thanks and i appreciate your kindness.

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Waiting to see G.I. with my IBS-C which has become progressively worse over the past two years triggered by medications. Linzess gave me horrible pain even at the lowest dose. The laxative that gives me the fewest side effects and works for me is Sennokot. I also found a product by Weber called "the right fiber for IBS" which comes from guar gum and is fodmap approved. It seems to reduce bloating a bit and lessen the Sennokot side effects. You can mix the tasteless and non gritty fine powder into hot or cold beverages. Absolutely tasteless.
I feel badly for you. My severe problems did not start until two and 1/2:years ago 63. (The ibs has been there since my late teens).
I know sennokot should not be used longterm but right now it allows me to get on with my life.
Surgery sounds so drastic and once you take that step there's no going back.

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@januaryjane

Not sure about my insurance, but im willing to look into other places, even studies

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Have you been tested for SIBO? Methane predominant SIBO is very common in chronic constipation.

Liked by elle1233

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@tiss

Have you been tested for SIBO? Methane predominant SIBO is very common in chronic constipation.

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Good thought, tiss! I was going to ask her about that. I'm kind of pro SIBO now, BUT the incidence of SIBO and IBS going along together is so high (and I believe getting higher as more is being learned). I was thinking about that especially since her problem started after an illness… and possible infection.. I believe there was one there. I think SIBO should always be considered in chronic constipation IBS without a cause.. because there is a cause… they just don't know what it is most of the time.

Liked by tiss

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Hi I have a Redudant Torturous Colon. Diagnosis Ed in a colonoscopy. Horrible pain. Constipation. Bloating and nausea. Housebound. Going to a colon surgeon Sept. 26th. I'm praying for you . Les

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