# Newly diagnosed, lifetime of symptoms



## ATH1089 (Jan 25, 2016)

Hello, folks. I am a 26 year old man, and have been dealing with the same symptoms as many of you have for, quite literally, my entire life. For as long as I can remember, I have had digestive issues of some kind. From general discomfort, to food sensitivities, to more serious symptoms triggered by various stimuli. Any kind of illness or stress would bring on an 'episode,' or just steady symptoms; a cold, an infection of some kind, a stressful situation (both good and bad stress). This went on through my childhood, and I always just thought it was normal.

Doctors were not helpful at all. My pediatricians would always say that I had a stomach virus of some kind, and send me back home. When I hit puberty, my symptoms increased in both severity and frequency. Constipation, difficult bowel movements, anxiety regarding my symptoms, and a great deal of pain. Again, doctors were less than helpful, and my parents had no idea what to do. When I was 14, I was able to see a pediatric GI specialist, who performed an endoscopy and found nothing; biopsies came back normal as well. He suggested that it was all in my head, convincing my mother that I was depressed or had some sort of psychological issue bringing my symptoms about. I was taken to a counselor and, again, no results. Nice guy, though; we talked about fishing.

For years, I just dealt with it. I missed so much time from school that I ended up dropping out and obtaining my GED. I had no social life of any kind; how could I, when I was afraid to leave my home? I spent about a year just hiding in my home, afraid to go anywhere farther away than the local grocery store for fear that the pain would come back. I then started attending a local county college, and my symptoms seemed to wane, though they did not disappear; I missed classes frequently, and rarely ever went out. Later, I got a job, and was able to live a somewhat normal life, though I lived on Pepto-Bismol.

Fast forward a few years. My symptoms had subsided a great deal from what they once were. I was attending school, working regularly, etc. About three years ago, all of my symptoms resumed, with a vengeance. They are as bad now as they were when I was a teenager, though i am better able to describe them now. I was without insurance for some time, and was unable to seek medical attention of any kind, regardless of how bad things got. Now I have some, though I cannot really afford my portion. I recently started seeing a gastroenterologist that a friend recommended.

He believes that I have IBS, based on my description of my symptoms. For a long time, 'normal' was painful bowel movements once every 7-10 days, during which I was practically living in my bathroom. After several years, probiotics became quite prevalent, and I decided to give them a shot. I started taking once daily, and it made a huge difference in my regularity. Once or twice a day, middle of the day, like clockwork. It did nothing to alleviate my other symptoms, such as the pain (which I will get to) or general discomfort, but it was still a relief to have normal bowel movements! That lasted a few months, and then, for whatever reason, the probiotics were no longer effective. I no longer take them; I cannot afford something that does not help.

At any point throughout my day, I may (and probably will) experience crippling abdominal pain. As a child, I only knew to say that I had a stomach ache, but now I know that the pain was in my intestines/colon, for the most part. It feels as if my intestines are being wrung out like a wet cloth, twisted and squeezed like it is going out of style. I literally cannot do anything during these cramps, and it has caused me to miss a great deal of school, work, and social events. I am now back to a very irregular BM 'schedule,' and the cramps during those are quite painful as well. I have found that some foods (such as spicy foods, alcohol, and lots of greasy foods) do not sit well with me, and I avoid them. I tried some exclusion diets (dairy, gluten, and both at the same time) with no relief.

Most recently, I had my first colonoscopy in November. Again, everything was normal. The biopsies showed some signs of inflammation, though the pathologist did not provide any details beyond that. After a breath test earlier this month (with lactulose), I found that I was experiencing SIBO as well. About two weeks ago, I finished a course of Xifaxan, and I am noticing some changes in bowel movements; they are becoming more normal (instead of loose) and more regular. Not quite as painful either, though I still experience painful cramps at other times and during some of my BMs.

In an effort to control the pain and other symptoms, I have tried the following medications: Dicyclomine (generic Bentyl, currently taking), Lialda (for the inflammation), Pepto-Bismol (live on this stuff), ginger ale (again, drinking way more than I should), IBGard (I could not tell if this made much difference, but it did give me minty heartburn), hyoscyamine (did not work, and made my headaches and fatigue worse). Nothing makes a significant difference; the dicyclomine, when taken every four hours or so, seems to take the edge of the cramps off, but gives me some urinary problems.

That is about it, I think. I do not remember what it is like to be without the pain and anxiety anymore; it is just a part of my life. And it is ruining the life I have struggled to build for myself. I am missing classes, missing work, and it strains my relationship with my girlfriend sometimes. I cannot take her out to dinner on special occasions, or even go to a movie for fear of having an 'episode' and having to leave. I am not really sure where to go from here. And I apologize for the long read. This is rather difficult for me to talk about with anyone, even strangers on the internet. I just wanted to get it out while I could.


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## vjsingh8888 (Mar 23, 2015)

Hey Buddy, I'm also a 26 year old guy. I am India. When reading your story, my eyes got teary because I am going through the exact same thing

( 1. None of the hundreds of medicine seem to work

2. Nothing helpful from colonoscopy

3. No social life. I also have to skip dates , hangout with friends, because of the fear of having an 'episode'

4. Dropped out of engineering degree in the final year because my IBS got worse ) So much more.

I'm writing you this, because only people going through the same thing understand these problem. I don't know about your country/society, but here in India in my society IBS is not very common. And normal people don't understand this sh*t. It's unlike any other problem, you look alright from the outside, but from the inside you are hurting, anxious, fearful, sad, embarrassed(to leave for the loo, multiple times in front of people ). It's not easy to find people going through the same things. Mind feels lighter to share the feeling with people going through the same issues. Most people with IBS I know is from this website.

I apologize, If I made you depressed. It's just your sentence " I do not remember what it is like to be without the pain and anxiety anymore; it is just a part of my life" is the EXACT same thing I tell my mum.

Now about finding medicines for IBS, I have tried most of the allopathic, ayurvedic, homeopathic, unani medicines myself, nothing cured the IBS. Initially most of the medicines works for a week or two then everything goes back the same. I've consulted with over 25 doctors till now, however, no one know the exact cure.

After all the suffering and research over the years , I've come to the understanding that there's no exact cure for IBS, however, you can control the symptoms.

And CONTROLLING THE SYMPTOMS is the best way to deal with this problem. I believe it's combination of psychological state of mind and physical state of the body, which is very hard to get in balance.

Selecting the food item, that agrees with your stomach, avoiding stressful situations, basically, continuously adapt the lifestyle.

I'm sure you must have tried the allopathic stuff like Xifaxan, saccharomyces boulardii, Lomotil ( Only Docs can prescribe them )

I can list a few things that works for me

1. Take 2 tsp of psyllium husk (organic) with 8 tsp of fresh curd. Add a bit of sugar, if you don't like the taste of curd. Psyllium husk is best natural fibre with no side effects. It's helps my upset stomach in the morning

2. Take yoga lessons from a place that teaches pranayama asanas

3. I avoid allopathy medicines for longer periods, because of their side effects but had to take one every now and then on Important days

(PLEASE CONSULT YOUR DOCTOR BEFORE TRYING ANY OF THE FOLLOWING MEDICINES)

a. I take a tab of Lomotil on a day of an important meeting

b. Norflox tz for severe diarrhea ( in case of stomach infection )

c. Gelusil for gas and heartburn

4. Again with the herbal stuff, you can try taking 1 tsp big fennel seeds roasted anytime 2-4 times a day.

I keep researching new cures and medicines for IBS. Consult with my doc, and then try them. Some work for smaller period , some for longer.

You can also share some cures or medicines if they work for you.

Keep reaching out. You're not in this alone. Don't lose hope. This is a wonderful web community. Do share


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## ATH1089 (Jan 25, 2016)

Thank you for your response. In talking with my doctor, he has gone over some things that are believed about IBS. According to him, no one knows what causes it, and thus cannot work on a cure. However, some people believe that it involves some miscommunications between the nerves in the digestive tract and the brain, which is what causes the pain and odd symptoms. I honestly do not know enough about anatomy or medicine to know whether that is true or not; I study environmental science.

I have had some luck with the dicyclomine. It seems to take care of the worst of the worst in my day-to-day life. Beyond that, nothing is really consistent. The probiotic that i was taking was a combination of many different kinds, but I do not recall the specifics. This is the one I was taking: http://www.gardenoflife.com/ProductsforLife/RAWDIGESTION/RAWProbioticsMen/tabid/2016/Default.aspx I recently stumbled across people discussing S. boulardii, and I am going to try tracking it down this week to see if it makes a difference. There is an apothecary (old school word for pharmacy, now used to describe herbal supplement shops) that stocks a few options.

I tried fiber on the recommendation of a doctor I saw once. It worsened my constipation to a painful degree, so I stopped taking it. After I stopped, though, I realized that it was wheat fiber, not psyllium. I am probably going to try again with a psyllium brand instead, and see if it makes a difference. I find that peppermint oil, or products made with it (real peppermint candies, peppermint capsules, teas) helps with an upset stomach and some of my more mild symptoms, but as I said, it does tend to give me heartburn.

Thank you for your kind words, and I hope you are able to find some relief for yourself soon.


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