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sad tales: women with ibs-c page eighteen

The tale of...Linda (8 July 2008)

Several years back I was officially diagnosed with IBS. I asked my gastroenterologist what that actually meant. He said 'It means you have trouble with your intestines.' I asked him if he could be more specific, as in, what kind of symptoms do people usually get. He said 'You'll have gas, bloating, pain that is either minor or severe, diarrhea or constipation'. The list goes on... I then asked him what causes it. He said 'I don't know'. I then asked him if he ever speculated. 'No. I don't believe in that' he said.

After trying every diet possible, both removing and adding foods, and after trying every supplement known to man, my symptoms gradually worsened. I once asked my gastro doc if he knew anything about a yeast infection we can get in our digestive system called candida. I told him I'd found it in a diet book and that I'd found several references to it online. He said 'I don't believe in that'.

The last medication he tried on me gave me unbelievably bad indigestion. It almost helped me to go! Instead, it caused everything inside me to move around just enough to hit nerve endings which shot pain down my lower back and legs. It was so bad one morning that I could barely walk. I woke because of the pain at 4am and fell out of bed when I put my weight on my legs. I didn't expect the pain to be that bad. I told my gastro doc all about it. He said 'That's not normal. I've never heard of that medication doing that. You're weird'. I think that was an official diagnosis.

I have been going to a naturopathic doctor for the last few years as well. I like her much better, even though many of the things I've tried with her haven't worked either. Psyllium fiber, some awful prune, cornmeal and date breakfast, halibut oil, flaxseed, probiotics, digestive enzymes...I'm sure if I go through my pill baskets I'd find 30 or more bottle of things tried and failed. Some seem to work for a week or two, but nothing has lasted any longer. In the end (pardon the pun) I have no choice but to resort to enemas and sodium phosphates, my explosives, or anything that my intestines aren't supposed to become addicted to.

My gastro doc once put me on sodium phosphates for three months. He said 'Your bowels need a little vacation. They'll start working on their own after this'. Anyone who has ever had a colonoscopy knows what this stuff is. It turns everything in your belly to liquid. First, you swell up like a balloon and then the faucet goes on. My husband gave me a new nickname during this period: Squirt!

My belly didn't start to work after that. Apparently they either didn't receive a long enough vacation or simply never had any intention of doing their job. It's kind of like having a difficult employee. You know you can't fire them and you can't replace them either.

I've begun to believe that my stomach has a mind of its own. It's on its own schedule. It's incredibly lazy and it's a pack rat. It wants to keep everything it comes into contact with. It's grumpy and it's ornery. It has some serious issues. It not only has a mind of its own, it's neurotic!

That's why I was so amazed to hear on the news one evening that scientists had discovered that our stomachs have grey matter - the same kind of tissue we have in our heads. I looked it up. It's true. In fact, 95% of the serotonin in our bodies is in our intestines. Nerve cells in our tummies use serotonin to signal information to the brain about digestion, like pain, gas, comfort and terrible 'gut' feelings from anxiety. Our bellies work in tandem with our brains, but they also work in isolation.

My mother attributed my IBS complaints to stress. I think she also thought I was a hypochondriac, just like some of the old medical texts would have me diagnosed. Well, for once, I can say to my Mom 'You were right, sort of'. Apparently we all have two 'brains'.

Before I came to the conclusion that my bowels had a mind of their own, I thought I had alien DNA (it's possible!). I looked up foods and herbs that increased serotonin levels in the body. Bananas, cheese, beer (alcohol), and sugar and carbs have been known to make me 'go'. No - prunes, coffee and all the rest of the normal stuff never worked. This has led me to self-diagnose myself as having NBS - Neurotic Bowel Syndrome.

I'm going to my doctor to ask him if he'll send me for a blood test to measure my serotonin levels. I may have too little or too much of the stuff. I may have to go on some happy pills! I should ask my gastro doc what he thinks. I wonder what he'll say?

E-mail Linda: [email protected]


The tale of...Lisa (5 August 2008)

I have had IBS forever it seems. I have had it since I was a child but no-one knew what was wrong with me. When I was 20 I learned I had IBS, even though they had thought I had colitis and I went through many meds for this. I suffer from both constipation and diarrhea. I have been to so many doctors I have lost count over the years. I sometimes feel so alone in my IBS prison.

My latest torture was being put on a drug called Effexor XR. It was awful for me, I only took half a capsule and I had awful side effects for three days. I would rather have IBS then ever feel that way again. I have no faith in doctors anymore and I can't even get relief from the anxiety I feel. I am scared to leave my house at times - what will happen to me again, 100th time in the toilet again. I feel like I should have a toilet tied to my butt wherever I go. As I get older it gets worse. All doctors want to do is throw pills at me and put hoses in my butt! I'm so tired of this. The one thing that helps is knowing there are people like me out there.

E-mail Lisa: [email protected]


The tale of...Neallean (3 February 2009)

I'm a 37 year-old mother of two teenagers. In September of 2007 I was at the hospital for an upper respiratory infection. The doctors called my PCP and he ordered something called z-pack. I went home, took it and about an hour later I started feeling weird so I went back to the hospital and they told me I was allergic to it. They also took a urine sample which came back saying that I had E. coli. They gave me meds to cure that.

My PCP at the time was a quack so my father suggested I go to his doctor which was a real relief. He ordered a colonoscopy and another test to see down my throat. Everything came back normal but the gastroenterologist said that I had IBS. He said it was due to either the E. coli or the nine years of meth I went through. My PCP put me on Klonopin and Vicodin, and Pristiq for pain. I've been diagnosed with generalized anxiety disorder and major depression because of this. It's hard to deal with this, it's all I think about. I go to therapy, and this helps me get a lot off my chest, but still it's a constant thought.

Right now I'm going through constipation and don't know what to do about it. I just thought you might want to know that I have been drug-free for two years and maybe my body is still healing. All I know is I wish someone would tell me I'm not crazy. Please someone respond to my letter. Thank you all, I have read your stories and I have gotten a few ideas. My symptoms aren't as bad as when it first started and I've been taking Digestive Advantage for almost eight months and it is a miracle.

E-mail Neallean: [email protected]


The tale of...Jo (22 February 2009)

I have read and related to so many of these stories that now I am crying knowing I really don't have to suffer alone! I have suffered with stomach problems since I was 16 (I am 42 now!) only then it was labeled spastic colon, quite daunting for a young girl! Over the years my symptoms have worsened and periods of stress and anxiety make the condition that much more intolerable.

When I have a bout I feel a sickness that I cannot describe and family and friends cannot believe and I spend hours traveling between my bed and the bathroom (I lost three pounds in weight during my last bout two days ago!). When I finally finish 'going' the sickness subsides but the weakness takes over and a raging headache and then hunger! I am then terrified to eat because I know that I will not go to the toilet for a week and things will start all over again, so the weakness stays for days.

I have recently been referred for cognitive behavioral therapy and will also be starting a yoga course in an attempt to beat my stress and anxiety issues, but I still need help with the physical symptoms which I know will not subside immediately. Therefore I visited the doctor. I broke down in the doctor's surgery yesterday when she told me there really was very little she could do to help. I pleaded with her that I needed it to stop so she read her little book of medicines and finally decided that I should try mebeverine, anyone heard of it? I am off out now to collect my prescription and am praying for a good result. I will let you know if things improve.

E-mail Jo: [email protected]


The tale of...Beth (29 August 2009)

I am 23 and I have suffered from IBS for two years now. I had previously been suffering from panic attacks for four years. Two years ago my uncle who I was nursing died of cancer and that along with the panic attacks triggered the IBS. The panic attacks and IBS have a vicious cycle - the IBS will start the panics or panics will start the IBS then they will just continue in a circle intensifying and getting more severe.

The pain is very intense and I go from being constipated to very loose. My stomach pains are very intense. I have been under a gastro for a year now. I have had every possible scan and test and I am told that all it can be is IBS. The pains are strange and shoot all around my stomach, but are mainly across my bra line and it feels like something is pushing out, does anyone else get this? Also I get a sort of kicking pain in my stomach exactly like when I was pregnant, does anyone else get this?

I have tried cutting foods out and taking medication but nothing works, and if I have even the smallest amount of alcohol I am in pain for over a week with stomach cramps, does alcohol effect anyone else? It gets to a point when the pain is so bad that I actually feel like my stomach is going to burst open. My stomach is all scarred from where I constantly have a red hot water bottle attached to me.

People seem to think I am exaggerating about the pains but as you probably know I'm not. Even doctors seem to brush it off like it's nothing and that it's our fault, like we're eating the wrongs things or something. I just want to live a 'normal' life and eat and drink and do what I want. I am trying my best to get on but it is hard. If anyone has successfully controlled this disorder please let me know!

E-mail Beth: [email protected]

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