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Severe chronic constipation - nothing working, help!


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#1 dysterious

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Posted 03 December 2008 - 03:19 PM

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Hello,Since September 2007, I have completely stopped going to the bathroom. I tried fiber at first, and seeing a GI doctor, but it didn't help and in December 07 I ended up in the ER from extreme nausea and pain from being so full of stool (as the CT scan showed). After that I learned about Fleet enemas, and I have since switched GI doctors, but after trying everything under the sun, all types of laxatives -- including physical therapy with biofeedback -- nothing works except the Fleet enema, and I still am unable to go on my own. The CT scans also showed that my stomach is massively dilated, as is my small bowel, and no one knows why.I can no longer eat the foods I used to love -- salad, veggies, oatmeal, whole wheat bread, fruit -- because they all cause EXTREME bloating, discomfort and pain. I have had to leave work on multiple occasions during the day to buy new clothes after becoming too bloated to fit into the ones I had on. My doctor has prescribed Amitiza (didn't work). I have used Miralax (didn't work, causes RIDICULOUS gas, bloating, etc). I have been on Misoprostol for my constipation for a month (not working). I have been on Lexapro for the bloating (didn't work). I took Xifaxan for a month. I take probiotics every day (Digestive Advantage for IBS as recommended by my doctor). I take Aciphex twice a day for Acid Reflux. I carry the following around with me everywhere I go: Reglan, Librax, Levsin, Prochlorperazine and Vicodin (for the times I am literally screaming in pain). I have had a colonoscopy, an endoscopy, an upper GI Series with Small bowel follow through, a Gastric Emptying Study, 2 CT scans, and an ultrasound. The prep for the first colonoscopy didn't work. I had to have a second one where I did the standard prep in addition to other measures including enemas to clean me out enough to do the procedure. Drinking magnesium citrate does not work. One time, I had to be disempacted by my doctor, which was the most traumatic experience of my life. I cried so hard from the embarassment and pain. No one knows what is wrong with me. I am in constant and total agony. I now eat what I believe is an unbalanced diet of eggs, turkey, chicken, low fat cheese & yogurt (dairy has not caused any issues for me) and occasionally some nuts, although too many of those causes bloating and pain because of the fiber. I avoid social gatherings such as my company's upcoming holiday party, because I know there will be food there and I won't be able to resist it and then I will feel sick and awful afterwards. To avoid feeling sick, I simply do not put myself in situations where there will be food. I miss out on a lot.And I have been gaining and gaining weight. Since this problem started, I have gained 15 lbs even though I don't eat any more -- and I exercise almost every day at a gym.I would really be interested if anyone is in the same situation as me, and has any tips. I am desperate.


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#2 ABNormal

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Posted 03 December 2008 - 04:08 PM

You sound like my situation as it is now. I don't seem to have a BM on my own anymore. I must take something. I take enulose every other day, MOM a couple times a week, Miralax and Fleet phospho. Fleet enemas don't always work for me. Sometimes I just do a regular warm water enema when it gets bad.It is very frustrating, but I've been diagnosed as having IBS. Have you been diagnosed with IBS? If your doctor hasn't come to that conclusion yet, then go to another GI. I'm not sure what another GI will do, but it's worth a shot.I've had IBS for 35 years. I used bowel cleansers for many years and they really worked! Then all of a sudden--nothing. I've tried aloe juice, honey (helps some). Like you Amitiza did nothing; reglan did nothing.I guess I don't have any solid advice for you, but I just want you to know that you are not alone.I will tell you that I've not allowed my illness to get in the way of going out and having fun. I won't let it run my life.

#3 dysterious

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Posted 03 December 2008 - 04:12 PM

Thank you for your response! Yes, I was diagnosed with IBS. My doctor is wonderful, he always tries new ideas every time I am there (every few weeks basically) to see what works. He is my 2nd doctor, my first one didn't believe me. So far, nothing has helped though. I am considering getting a 3rd opinion just for a fresh opinion though.

#4 Cherrie

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Posted 03 December 2008 - 05:04 PM

Hi DysteriousI'm so sorry you've been suffering like this. I am wondering if part (maybe small, maybe big) of the problem lies in some of the meds that you take? For example, Prochlorperazine, Levsin, Vicodin, and Aciphex can all cause constipation. And medication induced constipation can be really bad. It may be time to ask your dr. to re-think some of your meds -- for example, at least they could switch you from Aciphex to Protonix for the acid reflux -- Protonix has D (mostly mild, depending on the individual) as a side effect, and so is Prilosec. Hope you find some relief soon. And do keep us posted.
Let your love flow outward through the universe, to its height, its depth, its broad extent - a limitless love, without hatred or enmity. Then as you stand or walk, sit or lie down, as long as you are awake, strive for this with a one-pointed mind; Your life will bring heaven to earth. -- Sutta Nipata

#5 dysterious

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Posted 03 December 2008 - 06:02 PM

Hi Cherie,Thanks so much for responding!Prochlorperazine, Levsin and Vicodin are all for extreme emegrency situations, so I rarely if ever use them. They were each prescribed after a severe bout of pain or nausea many months to a year after my constipation began, and I don't take them on a regular basis. Aciphex is another one I was prescribed months after this started. My doctor specifically does not want me taking Prilosec, although I can't remember why.I do want to get another opinion just because it has been about 15 months now and I am no better off. I am only 25 years old and I used to be social and fun, and now I can't fit into any clothes and am always uncomfortable. I just want to get back to how I was.Thanks again

#6 bluenurse

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Posted 03 December 2008 - 06:08 PM

I'm so sorry you are having such a terrible time. I see you have had many tests already, but have they done a transit study (obviously you have slow mobility) , and maybe they should look at your pelvic floor, and muscle control. Just a thought, Hope you find some kind of relief soon.

#7 dysterious

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Posted 03 December 2008 - 07:22 PM

Hi BlueNurse,Thanks for responding!I had an upper GI series with small bowel follow through and a gastric emptying study -- both were normal. I also went to physical therapy for pelvic floor dysfunction for months and it didn't help at all.It seems like I have tried everything there is to try.... geting discouraged, hopefully a new medicine will be introduced.Thanks!

#8 IanRamsay

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Posted 04 December 2008 - 12:45 PM

HiHave you tried any sort of probiotic therapy? infact, have you been tested for parasites and ISBO?just curious as there is something that will work for you, you just have to find it. can you post the answer to the above?CHeersIAn
Emetophobic since 1987, IBS A (More C) since 1990, Chronic GERD + Chronic Gastritis since 1987. When people say it cant get any worse, i say at least you are still breathing! Keep the faith. Currently in remission thanks to specific strain probiotics and 12 years of probiotic reaserch.

#9 dysterious

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Posted 04 December 2008 - 01:45 PM

Hi Ian,I am currently on the probiotic Digestive Advantage for IBS, at my doctor's suggestion. I have submitted stool samples on 2 occasions to test for parasites and infection, and while I had C-Dif the first time (although I had no diarrhea at all which normally accompanies it), I was clear during the second one. I was on Flagyl, an antibiotic, for C-Dif, and then later I was on Xifaxan, another antibiotic, for possible bacterial overgrowth.Thanks for responding.

#10 gingerzing

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Posted 04 December 2008 - 07:07 PM

helloi am sorry for all your frustration and pain you are going through,, i too have been diagnosed with ibs, and have had this for 16 yrs now,,,going through a bad flare up as i type.i havent had as many tests as you, but quite a few, they found that through the scope down my throat , that the villi like digestive hairs in my intestines were burnt off, and concluded that i had celiac disease, so i faithfully followed the diet and it didnt help, so through more tests they didnt find anything, so concluded it must be ibs, i have read a few books on it, and it does sound like it, all i can say is that through my 16 yrs , once you have ibs , you have it, and just have to cope with it, they dont know the cause of it, and say stress can worsen it, as with me it doesi was also just to an allergist, have you been tested for food allergies at all? i can not eat yeast, eggs, or yogurt, and find i do feel better most of the time, although its a tough diet and not much varitey, i have also lost 40 pounds, and dont want to lose any more weight,,,i dont know what the answer is, i also want to let you know you are not alone, and i know how awful it can make you feel and how much you miss out on, i too dont go too far,,,,its too hard.good luck and hope you feel better soon

#11 SpAsMaN*

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Posted 10 December 2008 - 11:03 PM

I did a seach on misoprostol for C and found your post.You may want to try Dulcolax.It is even use to restore motility after a resection.You may get cramps in the beginning but cramps are worthed to get movement sometimes.Is Cytotec the same as Misoprostol?You need to know these drug can induce abortion.Beware!
---------------------------------
-->IBS INDUCED BY NSAIDS NAPROXEN
-->NSAIDS YOU SUCKS!!!
-Permanent discomfort/cecum&sigmoid stuck/trapped gas-
---->IBS-Type constipation normal transit time(diagnose with non-relaxing puborectalis december 2005)
--->Pubic nevralgia
***WORST PERMANENTLY SINCE RIFAXIMIN

#12 dysterious

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Posted 11 December 2008 - 09:02 AM

I have tried Dulcolax. I have tried everything. And yes, I know misoprostol can induce abortion. My doctor made me very aware when he prescribed it that you cannot get pregnant while using this med. And I am NOT pregnant!

#13 Shylight

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Posted 23 December 2008 - 05:06 PM

Oh my gosh,I am so sorry you are going through this! That is absolutly insane! At one point I too was relying on enemas. I doing them 1-2 times a week. My IBS has miraculously gotten better via Aloe vera.I feel your pain! Believe me!When you say you take Dulcolax, do you mean it doesnt work at ALL? Like you take the maximum dose and you dont go at all? or you take 1 pill and it doesn't? Or either way it you only go a small amount?

#14 dysterious

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Posted 23 December 2008 - 07:40 PM

Hi Shylight,Thanks for responding. The max dose doesn't work - nothing does. But I recently saw a new doctor and it turns out he (and another I went to for a test later that week) both don't think I have IBS -- that is why these things don't help. They think I have a problem with my small bowel, so the reason laxatives don't work is because nothing can get past there. More tests to come and I will find out more!Thanks!

#15 bluenurse

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Posted 23 December 2008 - 08:09 PM

Dysterious, I am so glad to read that you are going for further evaluation. Hope your new docs get to the root of the problem. Keep us updated on your progress. Really hoping you get some answers and some solutions!! Take care!!

#16 dysterious

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Posted 27 February 2009 - 11:38 AM

Thanks everyone for your support. So I had some more tests done (turns out I never needed the biofeedback physical therapy, as my manometry was normal) and I did the SmartPill test (anyone done that?) and it showed that I have colonic inertia. Treatments have not been working, will be going through a trial and error thing like I have always been doing. Also saw a nutritionist at my GI's office and she put me on a digestive enzyme. I spoke to a psychologist at my GI's office as well and she does a 7 week hypnotherapy program specifically designed for IBS (http://www.ibshypnosis.com/) -- anyone know anything about this, try this, have any advice on if you think it is worth a shot? Thanks!

#17 dysterious

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Posted 27 February 2009 - 11:39 AM

Also, I was on Colchicine for a month and it was HELL. Didn't help and caused intense stomach pain and nausea.

#18 Kathleen M.

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Posted 27 February 2009 - 12:03 PM

That Hypnotherapy is taught near here, and it does pretty well in clinical trials. No one treatment helps everyone, but it should be worth a shot.With the slow transit the diet usually is pretty low residue as too much fiber that can't move just backs things up worse. Hope you find something that helps soon.
My story of beating IBS: My Story with IBS
Ph.D in Biology

#19 Kitty G

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Posted 04 March 2009 - 10:50 AM

Dysterius:I noticed something on TV today that you might want to check into. It's a study they are doing for constipation. It's called the go study. You can find it at www.thegostudy.com. There was a phone number, but I didn't catch it. I'm sure it is on the web site. They pay for all lab and treatment and they may pay you to participate. It may be worth taking a look at.K

#20 dysterious

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Posted 04 March 2009 - 01:16 PM

Kathleen - Thanks for your input. I do think i will give it a shot.Kitty - Thanks so much for sending that link. I looked into it and they aren't doing a trial within 75 miles of where I am, but I gave them my contact information in case something opens up.





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