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Undiagnosed Digestive Issues
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Undiagnosed Digestive Issues

I am 31 years old and have been suffering with GI problems for the last 6 years. They consists of terrible gas stomach aches, bloating (to the point I dont fit in my clothes and look pregnant), girggling/trapped air in my chest, chest pains and the worst of them all.. severe constipation (don't go for 2 weeks and when I do its rock hard and barely anything). I have seen a total of 7 doctors and have 13 tests/procedures done. I currently am on the waiting list at the Mayo Clinic in Minnesotta.

Here is what I have had done so far....

1.) Sigmoidoscopy Result = hemmrhoids internal due to straining, some irritation and redness but biopsies say no cancer

2.) Upper scope = some irritation and redness but biopsies say no cancer

3.) Mannometry = lower esophagus is weak causing the trapped air and pains (taking Aciphex and Gas X for this, avoiding gas causing/acid causing foods)

4.) Empty Stomach Study = stomach is emptying in a normal range

5.) Physical Therapy for pelvic floor dysfunction = not the cause of constipation. When this did not work I begged my gi dr to do a colonoscopy to set my mind at ease.

6.) Colonoscopy = they found I have a very long and very torturous colon.. my GI dr was not able to complete the whole thing.. she got to my ascending colon and had to stop. She says surgery is not needed unless there was a knot or blockage (pretty much on my death bed) but this definitely is why I am experiencing gas, upset stomach and bloating. I begged her to give me something for some relief now that she knew this was the cause. She took me off of Miralax and put me on a high dose of Amitiza. This time I didnt stop taking it because it didnt do anything but because it made me VERY sick. I missed more work because the side effects made me feel as though I had the flu (aches, pains, chills, hot flashes, headaches). I took it as instructed with a meal to not get nauseated which does help... but when ever I finally have a BM I become nauseated before, during and after. I still didn't go to the bathroom for a week or two so the side effects were not worth the results. I was then taken off of of it and put back on Miralax.

7.) Barium enema xray =  because my colon is so long and loopy they had to fill me up with 3 bags of barium instead of 1 and had to flip me upside down for quite a long time to even get the test going. The results showed the same thing as the colonoscopy. Longest 2 hours of my life. Worse procedure EVER!

At this point the GI dr told me there was really nothing they could do for me but continue running more tests to eliminate other things. She continued to tell me that surgery was not an option even though my colon was so long, loopy and making my life miserable. I took it upon myself at this point to see the colon surgeon to see what he had to tell me etc as I kept reading and hearing about colectomy surgeries. The surgeon looked over all my files from all my various drs....

8.) Sitz Marker Xray = I have colonic inertia. My stomach and small intestine are working but my large intestine is not. I actually went to a colon surgeon after not getting any treatments answers from my GI dr.

The colon surgeon called and spoke with my GI dr whom I was trying not to go back to as I was done with getting no answers from her. He gave me the option to see a constipation specialist that she recommended at the hospital I had all the tests done at. The colon specialist told me I needed to have 2 procedures done to make sure my rectum and everything else was functioning before proceeding with surgery on my colon.

9.) anal manometry = pretty normal results. A little loss in sensitivity but nothing to be alarmed about

10.) barium defecography = shows that I have anterior rectocele which he believes could be causing my blockage

My GI dr/constipation specialist referred me to a surgeon that he highly recommended that was suppose to help me move forward with treating the anterior rectocele and that Dr visit was a complete waste  of time and money. She is a colon and rectal surgeon who works in womans health and pelvic issues but she is not a urogynocologist!!! (and I already saw a colon and rectal surgeon so I am a bit upset the constipation specialist recommended I go to her for this) there fore I have to go back to see their Urogynocologist about the anterior rectocele. So I really just went and saw a colon surgeon which I have already done. So no anterior rectocele surgery appointment set. Ugh.. more run around. The most I got out of this visit was her opinion which was that the anterior rectocele is not what is causing my 2 -3 week back ups of constipation and stomach aches etc... and feels my colon is to blame....there fore she does not agree with constipation specialist that sent me to her......she feels I have 2 completely different problems.. the colon being one problem which no one seems to know why and the anterior rectocele just being a completely second problem that I have.....she also seemed boggled on what was wrong with me..I could tell with the way she talked that she didn't really know how to answer me as to what she considered wrong with me and my colon. She said she wanted to discuss my case with the constipation specialist and then have a meeting with him and myself to decide what we should do about my colon. She mentioned colon surgery but is highly against removing the whole colon like the first colon surgeon suggested to me. I submitted my case to the Mayo Clinic in Minnesota. I am currently on their waiting list to see their gastro doctors.

I saw a urogynocologist who told me that the anterior rectocele is not to blame for my digestive issues. That it was not even severe enough for surgery and was a side effect most likely from straining due to my digestive issues.

In the mean time I started to research chronic constipation and came across sites that talked about yeast overgrowth and candida diet.

I had told every doctor I saw that I have had issues with rashes and hives my whole life.. and they are random and unexplained.. I also have had chronic yeast infections where I have been given Nystatin just incase I am irritated and was on fluconazole for 9 months. I was instructed to take it before my period to avoid yeast infections coming back etc. I have been on birth control for 13 years. Have experienced numerous UTI's and until I started to take a probiotic would get sick with sinus infections, colds and flus all the time. Anytime I was around anyone sick or got stressed I could predict getting sick. The more I read about candida overgrowth the more I am starting to wonder.... could this be the cause of all my issues.. or a side effect of being chronically constipated and not getting any answers.

Next month I have an appointment to have a glucose hydrogen breath test done. I convinced my GI doctor to order it for me as it one of the few things left they have not tried.

Anyone in a similar situation as me and find out that it was all caused from bacterial overgrowth or possibly fructose malabsorption? I am wondering if this could be the cause of if I do have it could be yet another side effect. Either way I want answers before someone tries to remove my large intestine.
11 Comments
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Avatar_f_tn
Interesting...as I was reading through your post, I started wondering if a yeast overgrowth was contributing to your issues.  And then you mentioned yeast!  I am still learning about it myself, but I understand that some people are more susceptible to it than others. I have recently beem diagnosed with yeast overgrowth and am on my second round of Diflucan.  I feel so much better with this drug!

You could ask your doctor to prescribe Diflucan for you to see if it helps. On my first round, it took 7 days to feel better. I took 10 days total, and then 5 days later my bloating and stomach pain was back. So I refilled it and am doing another 10 days.  

If you do some research on the Internet, you'll find a lot of good info on it, and also that it is controversial.  The guy who wrote a book on it in the 80's was widely mocked, and yet from what I read, he is right!  Everything he says makes sense.  

In addition to the Diflucan, you'll have to eliminate yeast, mold, and high glycemic foods from your diet.  This includes, bread, sugar, any kind of syrup, white rice, white flour, et.al. It is a big change, but the good news is that your diet will be really healthy as you will have to eliminate most junk and processed food because of all the added sugar.  You focus on lean meats and lots of leafy greens and veggies.  Go easy on grains and fruit. Within a week, you should feel better.  I personally would do this for at least a month before I would let a surgeon cut out my colon, just to see what kind of difference it could make.  

Thought: if your problem is primarily candida, cutting out your colon won't fix anything.
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Avatar_f_tn
Oh, yes!  And I forgot to mention probiotics!  This is essential for keeping the yeast under control.  Don't get the cheap drugstore kind as they won't be good enough for a significant yeast overgrowth.  I tried them and it was a waste of money for me.  

My doctor recommends Klaire Labs complete, and another brand called VLSI.  Both are refridgerated. Some pharmacies carry them, and you can buy them on Amazon. Make sure they are shipped with an ice pack.

I have found that 2 caps of Klaire Labs a day works better than 6 caps of the cheaper stuff, yet works out to the same cost per day.
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2180858_tn?1337719753
What is your diet like?
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1704915_tn?1357604854
How did they diagnose you with the yeast overgrowth? I am having a glucose hydrogen breath test done on June 15th .. would this show up in this?

I have already actually started to change my diet as if I have a yeast overgrowth and I am noticing a change in how I feel. Thats why the are doing the breath test on me.

I no longer have white flour and I have replaced sugar with stevia. I don't have high fructose corn syrup and have replaced bread with yeast free rice bread and wraps. I replaced condiments as well. I am now using Trinity Farms Stevia sweetened ketchup and bbq sauce and just got some vegan ranch dressing that is made with no distilled or white vinegars. I also take a probiotic and just started to add AZO Yeast supplements and a digestive enzyme to my regular multivitamin etc.

I was on fluconazole for recurring yeast infections last year. I couldnt get rid of them and my gyno said it was from my birth control and put me on it monthly and also put me on a lower dose birth control. Me and my husband are actually considering getting me off the pill and him having a vasectomy.

I fear that if this breath test comes back as a bacterial overgrowth they might put me on a antibiotic and make everything worse.

Is if possible to have a glucose hydrogen breath test done and then also have a fructose breath test done on the same day? Or do they have to be done on seperate occasions? I am starting to wonder if the yeast thing has to do with fructose intolerance etc
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1704915_tn?1357604854
going on 2 months of watching my sugar intake, no white flour etc. I just added no wheat. I am already noticing a HUGE change. I lost 15lbs (which I needed cause I have gained weight since my digestive issues). I am fuller faster and crave less. I am going to the bathroom atleast once a week now. I also hardly ever have to take my stomach pain meds. The bloating has gone down drastically. If I eat something I sometimes get the bloat and then I know to avoid what it was I ate etc. I really feel like this is helping me!! I have been reading the Body Ecology Diet book for reference as well. I am not following it 100% but am taking everything in it to heart and am trying the new foods it suggests and avoiding foods it suggests.

I am still going to my glucose hydrogen breath test on Friday. Not sure if anything will show up. To prepare for the test I had to stop taking my probiotics, Miralax etc. The night before the test I am to be on a strict dinner and to not eat it too late. We will see if anything shows up now that I have changed my diet so drastically.  
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1704915_tn?1357604854
Has anyone else had a glucose hydrogen breath test to see if they had SIBO? Did you have a high base count to start off? I had one yesterday and the nurse asked me if I followed the fasting (which I did and was actually VERY strict on it as this is the 14th test I have had done for undiagnosed digestive issues) because my base count was high. She gave me mouth wash and had me do it again and it was still high. She told me that over the 2 hours of the comparison testing after I drank the glucose that it did peak some after that as well but that since my base was so high to begin with I will have to wait till my GI doctor is back in the office to discuss (he is on vacation for 2 weeks). Just curious if this has happened to anyone else and what the outcome was.
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1704915_tn?1357604854
my test results are in and I do have SIBO.. they are going to try to put me on Rifaximin if my insurance will cover it. Have you taken this?? Did it help. I am reading I should take a stronger probiotic while I am on it.
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1704915_tn?1357604854
Started my Rifaximin which is called Xifaxan.. not noticing a change in my bm's yet but did experience some on again off again cramping and bloating. Stuff that I haven't been having since I changed my diet. I am hoping this subsides. Anyone else experience this with this medication?
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1704915_tn?1357604854
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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1704915_tn?1357604854
I worded that wrong.. its a temporary ileostomy
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1704915_tn?1357604854
I worded that wrong.. its a temporary ileostomy
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