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Irritable Bowel Syndrome (IBS) Message Board
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Old 08-04-2009, 11:50 AM   #1
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Dr said it was IBS, but I have to wonder

Hi all, please pardon this long tale. In Feb, I got what I thought was a UTI so I called my Gyn and got a script for Levaquin. After a week it didn't clear so I got some Macrobid. After another week, I thought my Interstitiial Cystitis has started back after 3 years of being quiet. So I went and had a bladder distention but that wasnt it either.

In the mean time, I now have started to have major diarrhea, like everything I am eating is going right through me. So my PCP sends me to a Colo rectal dr and she does a CT scan of my abdomen and it is ok so they schedule me for a colonoscopy.

The night before the colonoscopy, I drink about half of the GoLytely and I begin to vomit profusely, sink fulls. That in turn, I think, has now started my Hiatal Hernia to cause me excruciating pain, that was June 1st. The colonoscopy showed 1 spot that turned out to be nothing. Everything else was fine. But now since June 1st, I have been left with unbearable excruciating upper abdominal pain right between the breast bone that has left me unable to eat anything solid.

I have existed on applesauce, jello, watermelon and occasionally managed a small bowl of mushy cheerios. I have lost 39 pounds now.

I have had a complete ultrasound of my entire abdomen with the only finding being a tiny bit of fatty liver. I have been tested for Celiac disease. I have had my stool tested 3 times. All of these things have all come back negative.

My PCP sent me to a Gastro dr and I saw his NP and she put me on Sucralafate 3 times a day. That did start to help the diarrhea after about a week and by 2 weeks the diarrhea was completely gone but not the pain in the abdomen. As a matter of fact, it has now caused me to be more constipated. She didn't know what was causing these symptoms either.

Yesterday I had an Endoscopy and it showed absolutely nothing in my stomach, no ulcers, bile or anything. I still have the Hiatal Hernia I have had for 10 years. He did find a pretty good size, his wording, duodenal polyp that he removed and sent for a biopsy but that was all. The Gastro dr said that he thought I had IBS and wanted me to try taking Bentyl 1 hour before a meal. I said and IBS would cause such horrible stabbing pain in the upper abdomen and he said oh yes. So he told me to take the Sucralafate only once in the morning and try the Bentyl for a week and if it doesn't help the abdominal pain to call his office back.

My question is to have IBS shouldn't I have had to have something show up on my colonoscopy to have an IBS diagnosis????

 
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Old 08-04-2009, 02:10 PM   #2
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Re: Dr said it was IBS, but I have to wonder

Hi Missy,

I have had a similar situation, in which IBS was diagnosed, and I was treated for it...but it never was IBS at all! IBS seems to be a great blanket to cover anything that cannot be figured out. That feeling of frustration kicked right up when I saw your thread!

I cannot speak to your other health issues, because I am not expert in those areas...but I did get a IBS diagnosis about two years ago, and by the time I finally figured out what the real problem was, my kidney function had dropped so low, I was too risky to have the surgery I needed.

My pain turned out to be pelvic adhesions, a GYN problem, and nothing to do with IBS. I guess my mistake was complaining of abdominal pain, when I should have said pelvic pain.

I was actually in the operating room (2 Mondays ago), had the IV in, the gown on, and speaking with the anesthesiologist...when my surgery was called off. I got up, got dressed, and asked what next? My answer shocked me...Go home, and learn to live with the pain. It will have to become a medical emergency to be operated on. Wow!

I wish I had some great insight on how to help you, but I don't. Hopefully knowing that you are not alone, helps a little. We are not doctors, so how are we supposed to figure things out if our doctors cannot?

There are many very knowledgeable folks on these boards, and I hope they can offer you more than I. I wish you well...

 
Old 08-04-2009, 04:06 PM   #3
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Re: Dr said it was IBS, but I have to wonder

OMG they called off your surgery because your kidney function was so bad?? Did they address that???? You poor woman. I can't imagine being in the OR and then having to get dressed and go home. I don't know how I would have handled that. I hope you are able to find a surgeon who is going to be able to help you.

I know what you mean about feeling about certain diagnosis's being a blanket or a catch all when they can't figure out what is wrong with you. Sad, very sad.

I tried a Bentyl pill and a few bites of mashed potatoes which 5 minutes later I threw up, now thats a new one, I have not thrown up at all this whole time!!!

Thank you for your reply writeleft and I wish the best for you also.

 
Old 08-04-2009, 08:37 PM   #4
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Re: Dr said it was IBS, but I have to wonder

Well I do have stage 4 Kidney Disease, due to strokes and malignant hypertension. In the two years it took me to finally get a proper diagnosis, my kidney function dropped from stage 3, to stage 4. If it weren't for all the time it took to get out from under the IBS diagnosis, my health deteriorated beyond the point of no return.

My initial reaction was that I was way sicker than I had thought, and it scared me badly. My GYN told me that I was the sickest patient he had ever dealt with in over 40 years, and he just wouldn't and couldn't put me at such risk. I had to understand. I will be on dialysis in the next few months, so I feel like my window of opportunity is over.

Thank you for your understanding, but I am here to support you. I didn't mean for this to be about me...sorry!

Actually, I am feeling sick as I type so I will try again tomorrow, if that is ok?

Your friend, Janet

 
Old 08-04-2009, 11:38 PM   #5
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Re: Dr said it was IBS, but I have to wonder

Missyb 57 i can assure you that nothing will show up that a person has IBS.All the tests are done to ensure that a person does not have another problem ie for instance,cancer,causing one,s problems.
A person can be completely healthy in all respects and have IBS.I have never heard of anyone passing away due to IBS.Go well.

 
Old 08-05-2009, 06:33 AM   #6
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Re: Dr said it was IBS, but I have to wonder

Thank you overberg for your reply. I certainly didn't mean to imply that I was going to "pass away" due to IBS but not being able to eat solid foods for over 60 days now and not being able to tolerate the taste of any of the on the market supplement drinks means that my body is not getting the necessary vitamins, minerals and supplements needed.

Also I need to mention that I have Hashimotos Thyroiditis and I currently have 3 over 1 cm nodules and am currently off my meds in order to take an Uptake scan on the 17th to see if another surgery is warranted. So if you add that into the mix, I am sure that is adding to the problem also.

If I might ask another question please just to see if this is a symptom of IBS, since I am not really familiar with personal symptoms?

Have any of you had NON STOP relenting stabbing upper abdominal pain and a feeling like someone has a wide leather belt under your breast tightening it for 64 days straight??

The drs thought is sounded like Pancreatitis but all the tests they did came back negative.

 
Old 08-05-2009, 07:13 AM   #7
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Re: Dr said it was IBS, but I have to wonder

It sounds to me like you have gastric dumping syndrome....

 
Old 08-05-2009, 07:37 AM   #8
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Re: Dr said it was IBS, but I have to wonder

This is an interesting theory. I am going to research this. Thank you for your reply Brocaille.

 
Old 08-05-2009, 06:35 PM   #9
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Re: Dr said it was IBS, but I have to wonder

I was finally diagnosed with IBS last October after over 5 months of horrible diarrhea--5-20 times daily. It is a functional disorder with no test. That is why they rule out everything else in order to come to a diagnosis.

Have you been tested for C Difficile? I was tested twice before my final diagnosis. People typically develop it after having been on antibiotics.

I developed my abdominal pain in January. They tell me it is my gut spasming. Doesn't feel like spasms, but the medication they gave me to help with treatment helps.

Odd thing though. I had a basically unrelated surgery last October also. Since then, I've gone from IBS-D to alternating. How frustrating when I had been so regular my entire life.

While IBS makes you miserable, it isn't life threatening. The trick is finding out what works to get it under control.

One of the things my doc recommended was the VSL3-DS. It is a medical food grade probiotic that is available by prescription. He said it is the best out there. There is a sticky at the top of the IBS board with more information on it. I found it helpful, but can't afford it regularly so I've looked for other solutions.

 
Old 08-06-2009, 06:06 AM   #10
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Re: Dr said it was IBS, but I have to wonder

Hi all and thanks for all the great replies. So many helpful intelligent and caring people. It is great to have these boards to come to for help.

Yes I have been tested 3 times for C Diff and all negative. I am going to call the Gastro dr today as the Bentyl pill isn't helping and the pain is actually increasing to the point that now even the soft food is causing me increased pain.

I want to apologize if somehow I implied that I thought I was going to die from IBS. I have reread my original post and can not find it anywhere, but I must have. I certainly did not intend to. I fully understand that it is a not a life threatening condition but a life altering one and one that you all seem to deal with so well. I admire you for your will and tenacity in dealing with IBS.

Thanks again to all.

 
Old 08-06-2009, 11:05 AM   #11
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Re: Dr said it was IBS, but I have to wonder

Missyb 57 i understand your concern over your health problems.However,that concern may aggrevate your IBS and i was conveying to you that IBS is not life threatening.I can assure you that i wish you well and i hope that in due course you will come back to the Board and tell us that there is an improvement in your health.Go well.

 
Old 07-22-2012, 09:26 AM   #12
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Re: Dr said it was IBS, but I have to wonder

I no how you feel but bassicaly ibs has no test, the docs literally told me since they couldnt find anything else wrong that it had to be ibs. As far as symptoms ive learned to avoid a lot of syrup or butter and fruit unless i no ill b able to be near a bathroom just in case. Also i bring pepto with me everywhere and take one after i eat and it has greatly reduced my symptoms. Also if you are having trouble with your medication there is a few others your dr could prescribe possibly, im on pamian which i can take up to 4 a day if im having a bad day or i dont take at all if im feeling good which lessens the constipation a lot

Hope you find a systom that works! Also many ibs symtoms can be set off by stress so if you try to not get stressed out it helps!

 
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