# 15 years of pain - the end?



## nyc4eva (Jul 7, 2015)

I say this is the end of my story because I'm truly at the end of this. I can't live like this anymore.

I'm a gay male in my mid-30's, living in NYC. The earliest IBS moment I can remember happened about 15 years ago. I remember coming home from a club very late one night. While standing on the subway platform with friends, I had a really bad stomach ache. I started sweating profusely and realized there was no way I would be able to hold whatever was building up inside of me. I begged the woman working that booth to allow me to use the bathroom and, to her credit, she allowed me to. It was not pleasant. I chalked it up to just being something I drank or ate earlier.

Over the next few years, I had occasional random bouts of running to the bathroom. However, it wasn't controlling my life. In 2004, many things changed in my life, personally. I had an HIV scare and part of my family life fell apart as well. I started having diarrhea every single day, several times a day. Ever since then, It's been better or worse, though, more worse. My stomach starts to growl and burn. Then the panic starts and I start to sweat profusely. The sweat runs down my head, face and back as if it's 110 degrees outside. And then my head starts to spin. By the time I've used the bathroom, my body is spent. All I want to do is crawl into bed and fall asleep because of the sheer terror. My therapist and psychiatrist have explained that it's all the chemicals that my body is releasing from the panic. I should also mention that I've been on anti-depressants but it really does very little for the stomach problems. It just tends to dull life. Both agree that, if it weren't for my stomach, my life would be relatively normal. I don't have any excessive depression or anxiety, other than the IBS problems.

I've had several colonoscopies. I've had every test known to man from various GI doctors in the city.

I finally saw one doctor in 2010 who diagnosed me with having parasites. I got diagnosed with Blastocystis Hominis and Giardia. Those, apparently, disappeared. However, I had never been tested for parasites before so who knows how long they were in my system, wreaking havoc. I've taken probiotics to try and heal my insides.

I've tried to change my eating habits. I was in the hospital for almost 2 weeks with pancreatitis and gall stones...and, even though I was on a drip and not eating solid foods at all, i was still having it. I wasn't able to take the subway to work because, more often than not, I would have to get off the subway in an awful panic attack of diarrhea.

That was the norm.

About a month and a half/two months ago, things got even worse, if you can imagine. I couldn't get anywhere. My stomach just kept having diarrhea, all day, every day. I had to stop working completely so I currently have no income coming in. I've been seeing a different doctor now who diagnosed me as having a DIFFERENT parasite: E. Histolytica and put me on two different meds. They didn't work. So now has put me on two OTHER medications. I'm having less diarrhea, in that I'm back to the lesser Hell I was dealing with before the last couple of months.

They're run tons of tests on me, repeatedly. Oddly enough, not the last test but the test before that came back with my typhoid/salmonella levels as "middling." They said it seemed like I had been exposed to it but it's nothing to be concerned with. However, no C Diff or anything else. Never tested positive for it, ever.

However, I still can't live like this anymore. I'm completely emotionally spent. I can't get to work. I can never do anything outside. I haven't dated in over a decade at this point. Hell, today I couldn't even make the walk to the post office without having to go into a bar to use the bathroom. I'm extremely depressed and really want to kill myself. My family wants me to go to the Mayo Clinic in MN but, from everything I've read, they basically suggest the FODMAP diet (which was suggested by my regular GI and didn't work) and send you on your way. I'm EXTREMELY interested in the fecal transplants because of all the wonderful things I've heard but I also know that there's no way to find a doctor who will do it for someone who doesn't have C Diff.

I'm sick of going to doctors and getting a shrug plus a suggestion of a colonoscopy. I'm absolutely miserable. I'm trying to go to the gym and meditate on a daily basis but I just feel completely hopeless. I really can't go anywhere. If I walk to the movies, I always have to stop at the KFC or the library before I can get there. Most times, I'll have to use the bathroom before and after the movie as well.

It's embarrassing. It's upsetting. And I can't live my life in any capacity. I can't go to the park like a normal person. I can't ride a bike or travel. If this is what my life is or can't improve then I don't want to live like this anymore.







Every day is full of pain.

If anyone has any advice, I'm all ears. But I also don't know how much more of this I can take.


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## Daenerys14 (Jul 1, 2015)

I'm sorry to hear you're going through this, It's not a good place to be.

I can't imagine what it must be like to go through such hell for years with no real answer.

I'm sorry I don't really have anything that can help you. Obviously things are bad if you have suicidal thoughts.

Have you spoken to your doctor about your suicidal thoughts? It's important you do (If you haven't already) I know it won't being about a cure for your symptoms but it's important they know. Sometimes with Anti-Depressants it's a matter of finding the right one as different anti-depressants work differently for different people.

My heart goes out to you. You're not alone, although I know you feel like you are.

Don't let this beat you! Keep fighting the good fight, you'll find the answer as long as you keep looking.

Sorry if this doesn't really help you. Sending hugs your way.


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## Jen37 (Nov 10, 2011)

I am so sorry to hear about your pains. Have your doctors ever tried giving you Lotomil or immodium to see if it would stop the diarrhea? I know there is also another drug, I cannot recall the name of it, but they give it to people who have had their gallbladders out that get diarrhea( it starts with a C). They use it to help bind things up.

My heart breaks for you. I am a female and I always have this horrible fear when I get diarrhea because I also have Interstitial Cystitis which is a debilitating painful bladder disease that leaves me VERY prone to getting urinary tract infections. Well diarrhea causes UTI's for a lot of women due to our anatomy being so close to the rear. Even with showering and staying clean after using the toilet , I still can get them. Then I have to take antibiotics which only worsen my gut. It is like a nasty vicious cycle. I also do not go out much at all now days. I lost most of my life when I got hit with the Interstitial Cystitis but now with my intestines and gut issues, forget it, it Is even worse. I literally sit with my heating pad all day most days. I have been sick since 2003 with health issues and it just seems to keep getting worse as time goes on.

I also am interested in Fecal transplants. You are correct, no doctors in the United States are willing to do them unless it is for refractory C-diff. Even then some hospitals wont do them, they will let the patient die. Very sad really. I do know some people do them by themselves at home. They find a healthy donor( friend or family) they know very well and use their stool. I wish more medical establishments would offer them, I really think they are the way to a cure for many gut afflictions.


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