Ankylosing spondylitis

The Beast returns…

pain“There is something terribly morbid in the modern sympathy with pain. One should sympathise with the colour, the beauty, the joy of life. The less said about life’s sores the better” Oscar Wilde

March 2009… The beast returns……

Around the end of March, as I was driving to work one morning, the pain returned. I had to pull off the road because a wave of nausea came over me followed by severe cramping. This time there was something new, chills. I had never had chills before. I made it back to the house and spent the next several hours on the toilet with diarrhea and pain. Eventually it subsided and I tried to think of what it was I ate that brought this on. There was nothing I could attribute this flare-up to, I had not eaten anything that would have caused this so what the hell was happening? The next day was not any better; I called in sick again and lay on the couch. On the third day I took myself to the ER. The doc said they couldn’t find anything wrong again but that I might have a bug or something. I spent the next two days and the weekend on the couch. By Monday I was doing fine again. My doctor suggested that I begin taking a motility drug that would slow down the contractions in my intestines; she prescribed Bentyl which I went and got eagerly. It worked, the pain went away and life resumed as normal.

For the next several months I began to go through some mental changes. I wasn’t happy being where I was. The “Man” and I were causing each other a lot of stress as we tried to buy a house and it was not going well with the purchase. We were both stressed and life with each other was not too good. I decided after the property purchase fell through that I needed some space, and after an argument moved out and back closer to my work. I got an apartment and things were going pretty well. I got a flare-up once or twice but it wasn’t very bad. Usually if I had a bowel movement I would be fine. Around the middle of June the beast returned for an extended stay.

I was house sitting for “co-worker” while she was in Florida and the pain returned. I was at my wit’s end trying to figure out what was wrong with me again. I researched all topics related to Celiac’s Disease, read studies and articles and one day on a newsletter a researcher commented that some people with Celiac’s Disease have it so bad that they acquire what is known as increased intestinal permeability or “leaky gut syndrome” which is large spaces that have developed between the cells of the gut wall allowing bacteria, toxins and food to leak into the bloodstream. I imagined it to look like a hose with a lot of holes in it. I found a website that explained leaky gut syndrome and this doctor concurred with the research article. So could that be the reason I’m getting sick again? Do I have a leaky gut? There were some suggestions for those with leaky gut, which was to take a lot of different supplements i.e., prebiotic, glutamine, fiber supplement, barley grass to name a few. I went to the website suggested by the doctor and ordered all the above and more. I waited patiently for my new fix to arrive.

Once I began taking the regime of nutrients the pain went away. I had one or two flare-ups but they would end when I had a bowel movement. I stayed on the supplements for a month and then Labor Day weekend I had a change. I went out-of-town for the extended weekend to have some fun with the “Man” up to the mountains. All was well until Saturday morning and I couldn’t have my usual bowel movement. I went the whole weekend without one but really just felt uncomfortable no real pain. Once I got home all went back to normal, bowel movement was fine and the rest was good. Twice in September I woke with some discomfort but with the bowel movement felt fine. On September 25th after work I began feeling crappy again and on the 26th was in full cramping mode. I missed the employee banquet and spent the weekend on the couch. By Monday I was doing better but was still not at my best. The 29th was my birthday, but really did not have too much to celebrate. I wasn’t myself and I knew it. The 30th I woke up from a dream where I was knitting and poking myself with the needles. In my dream as I poked myself it would hurt so I tried not to do it. It continued until I woke myself up. Then I realized my gut was hurting so bad I just wanted to die!

As I tried to relieve the pain it just got worse, nausea overcame me, toileting did not work, chills increased. The pain would linger with bouts of excruciating stabs to my gut overcoming any type of rational thinking. I took myself to the ER. I knew they couldn’t do anything; I’ve been down this road before…. My motive was pain relief and that is what I got. Missed work again…my boss should just fire me…

I spent that day on the couch and returned to work the next day, really not feeling much better. I made an appointment with the GI doc; this time he has got to find something. It seems that things are getting worse not better. Now it is October 6 and the pain has returned again. Nothing works; I take pain killers and the motility drug which make me goofy. Makes no difference what I eat the pain lingers; trying to eliminate foods has not worked, my next step is the biopsy!

Well around the middle of October I got in to see the GI doc, well his PA not the actual doctor. We discussed that we could do all of these test and then have another colonoscopy, in the meantime he gave me some probiotic to take and told me to increase the motility drug to 2, 4 times a day. He told me to get some lab work and got set up for the colonoscopy. He had warned me that the probiotic would cause gas… that was an understatement! I had the lab work done to check for Celiac’s, C-diff, low white blood count and any other diseases that could be identified by the “stool” sample. That weekend I had to travel to Boston for a conference and I ate… It had gone well taking the “new” nutrient “Align” and other than gas I didn’t have any pain and bowel movements were getting “normal.” Anyway on the trip to Boston I ate foods I haven’t had in a year. It was so wonderful to just sit and order something and not worry about what it was made from and what ingredients it had in it.

I did have gas buildup on Saturday during the conference, but I survived that. Then I got gas again on Monday on the trip home. It wasn’t bad but traveling with a bloated stomach in a small seat on a plane does not make for comfortable arrangements. The following Tuesday I call the “assistant” and it was good news…. No Celiac’s or any other disease that would make me have all the problems I was experiencing. So what was it? As we discussed the result we both came to the same conclusion… the antibiotics I had back in 06 most likely robbed my body of the entire good flora” my intestines needed. So now what? Well scheduled colonoscopy would go on; guess there is a microscopic organism that can be identified and could be the reason for continued difficulties but these cannot be seen without a colonoscopy. So colonoscopy it will be!

Well the colonoscopy was a bust! The doc did find a polyp but I was soooo mad because he did not do the biopsy and gave no reason for why he didn’t. The “assistant” said “Joyce, you just have irritable bowel syndrome”! I was pissed. I knew damn well I didn’t have irritable bowel syndrome but what could I do?

The year went by and in November “Man” and I bought a house and got back together. But the pain never went away again. Problems with my gut and body in general still played havoc on our lives. I was beginning to think that I was going insane and that everything that was happening to me was all in my head. “Man” was supportive as much as he could be. I was miserable, had no energy, I know I was depressed and it even hurt to smile. I did not like life at all.

Next… the Alternative Way

3 replies »

  1. Oh the process of finding a diagnosis can be such a PAIN! And don’t even get me started on Drs… but you probably already know how I feel about that… 🙂

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