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My story...thanks for listening

IBS-D Fatty Fats diarrhea urgency hemorrhoid malabsorption sugars pancreatitis leakage

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#1 cheddacat

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Posted 18 April 2017 - 10:09 AM

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2015 - I had an ovary removed through laparoscopy with 5 abdominal incisions. Afterwards, I nursed my digestive system as well as I could. Two months after surgery, I noticed what appeared to be steatorrhea, leakage and complications with that. The more debilitating symptoms of this are nearly in remission all the time now. But I still have fatty stool and lately I'm noticing it more often. I think I'm starting to notice that when I eat too many even healthy fats in a day, it'll return more. Like too much olive oil in one day. That said, too much meat fat does not make me feel very comfortable abdominally and when I do no fat in my diet, it leaves me very hungry and weight loss begins. 

 

Early 2016 - I had what was diagnosed as gastroenteritis with mild fever the first day and D for about 3 days or so and have not really been the same since like it's been way more likely to have watery or loose stool daily. At that time, I quickly lost almost 20 lbs. I have gained back and kept about 14. I have had 3 continuous months of remission at least once and almost 2 months remission here and there from time to time. 

 

2017 - Most traditional stool testing has recently come back negative. 

 

My GE and his PA keep saying IBS is my only diagnosis but I suspect something more. I typically have one diarrhea BM every morning with urgency. I hate that it's so loose, fatty looking and most days just too much bad odor. If I have had any bloating the day before, it can also activate a hemorrhoid issue but that is also in remission now. Most of the stress in my life is recently removed by leaving a horrendous job situation. It's been almost a month however and still the same diarrhea pretty much once each morning where my "normal" pre-2015 BM used to be - I say it in quotes because my BMs have been softer then most people for my life - but this loose, fatty D is ridiculous which is why I keep asking so many questions of my doctors. I suspect more steatorrhea, malabsorption or pancreatitis. They haven't been open to discussing these with me. Like I'll ask about malabsorption of fats or sugars and they just shake their heads and say no probably not. I wonder why it seems like they want to wait until it gets worse? I've played around with enzymes and probiotics but I just feel lost. They have not advised a colonoscopy. I have recently moved. I hope my new GI will talk about some other possibilities. I would like to have a plan even if it needs to be flexible. I've adopted a very broad definition of what it means to be ok health-wise these days because, luckily, I just don't have a lot of pain or multiple BMs so I guess that's my new normal. I have had some nausea here lately and sometimes get chills and a BM at the same time...passes pretty quickly. Again, just wondering how it's all connected...

 

Am I crazy or could my team of doctors just try a little harder now to figure it out so that whatever I will have to deal with I can start dealing with now? I am currently looking for a job. It's a great time to make changes. I'd sure like to know if I have to focus on a work-from-home job or not. Plus, I'm just one of those people where if my lifestyle needs to keep changing more and more with this IBS, I'd like to get started on any new changes sooner than later. For me, it just takes the shock value off and I've noticed learning sooner can be cheaper to prepare for as far as new diets, etc....But I appear to be in the minority with that theory....unless someone responds that they are with me on this!

 

I'm 42 so I guess we are going to continue to wait and see and I'll have to manage it. I have therapy in my background, meditation, behavioral and cognitive therapy workbooks, good friends, family and so forth. I also have mild and moderate anti-anxiety meds if I have to go to work and it's a particularly questionable day. 

 

I tried a high fibre diet and was kind of put off by it a little. I started the FODMAP diet a month ago and also went dairy free too. I can say that most of my abdominal pain and discomfort is gone which is a relief. I've had intermittent abdominal pain which seems intestinal my whole life usually only about quarterly and only for one day here or there. After losing the dairy most of the time as well, I can say that I can predictably see a lot less gas and bloating. I'm so hopeful for the good things.



#2 cheddacat

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Posted 18 April 2017 - 10:28 AM

Is it everywhere in America that GIs are a 2-month wait for an appt? Boy, did I go into the wrong field. 



#3 mellosphere

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Posted 18 April 2017 - 07:35 PM

I am sorry you are not doing well cheddacat. Unfortunately in my years with IBS, it's not about getting your doctors to work harder, although getting a colonoscopy may be a good idea to help put your fears to rest. Yet in most cases of IBS, there's nothing else to "figure out". Trust me I have spent many hours as well as many on this board looking for other causes of diarrhea but it really seems there is an idiopathic condition of chronic food intolerance and diarrhea.

Some people will say that it is related to hormones and enzymes and that may be true in some cases but they are rare and often have other telltale signs which do not appear the same as IBS only.

Some people do have more serious forms of intestinal disease but most of us are told "everything looks normal" after colonoscopies and breath tests and blood tests and every test known to mankind.

Some people believe it is related to bacteria. I tend to agree but am not yet convinced that is the answer for everyone, and the hard part for this explanation is that there is no treatment available for repopulating your gut flora. See the many threads on this board about probiotics not taking hold if you want more info. You can do a home FMT but some of us including me have tried and it has not worked, for various reasons I imagine. I would love to have a professional FMT but it is not yet available in the USA.

Best suggestions are to eat as healthily as you can that gives you the least symptoms and no cheating. I'm not discouraging you from having more doctor appointments but they are doing what they know to do (lots of the time, tho i will agree there are exceptions). The problem is that so far, nobody has shown a real reason for this disease and without that, there is no drug or treatment available to treat this. Just managing the symptoms is the best they can help you do, and sometimes, i agree, it doesn't seem like it helps much.

I really believe that if there were more treatment modalities available and approved by the FDA for IBS that the doctors would use them. There just aren't answers for this chronic diarrhea. Hang in there, it can be overwhelming and a little depressing at times. Thanks for sharing your story.

#4 cheddacat

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Posted 19 April 2017 - 01:03 PM

You have been so kind and helpful. Thank you, mellosphere!



#5 cubsfan

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Posted 05 June 2017 - 10:02 AM

Hi Cheddacat!  I recently posted a similar inquiry to the community as I was wondering at what point people accepted an IBS diagnosis versus something more sinister.  I started having similar symptoms about 22 months ago, out of nowhere.  I have since had blood work, stool tests, MRIs, a colonoscopy and an endoscopy.  All clear and negative.  I have been working with an up front and personable gastroentologist.  He wanted to run the gambit of tests to rule out the worst but told me ahead of time he was willing to bet he wouldn't find anything.  He also told me this can be a frustrating journey and after all the tests have been done they lump patients into the IBS category which means they don't really know what's going on.  We have been working on diets, meds, etc.  Haven't had much luck so far, hoping to find the magic bullet one of these days, best of luck.







Also tagged with one or more of these keywords: IBS-D, Fatty, Fats, diarrhea, urgency, hemorrhoid, malabsorption, sugars, pancreatitis, leakage


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