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sad tales: women with ibs-d page twenty-four

The tale of...Meg (13 October 2009)

I am so happy to have found this site. I have suffered with IBS for over 20 years. I am 60 years old. The symptoms seemed to start shortly after having my gallbladder removed. I often have accidents and feel so ashamed and dirty. Often I do not even know I have soiled myself until I visit the toilet.

A few years ago I had a really bad attack - every time I ate anything it went straight through me and I ended up having panic attacks. I also went from over 10 stone to under eight stone in two months. I have had so many colonoscopies, endoscopies and barium enemas that I have lost count. I have a small pile and it often bleeds with the amount of watery diarrhea I pass.

At the moment I am going through a pain stage where I feel as if someone is putting a knife into my lower left side. Certain ways I sit the pain is worse. It has comes and gone a lot over the last week, it is driving me nuts. Does anyone know what can help this pain? I eat loads of fruit, veg, and whole meal products as I was told to do so my diet does not vary much. I was on mebeverine (three times a day) for over three years but I felt they were not helping so weaned myself off them gradually about six months ago.

I can go to the toilet anywhere from one to five times a day. Mornings are the worst; usually by the afternoon my toilet visits have stopped but I am still left with the cramps. It is just a never-ending cycle. It really puts me into a deep depression at times. Sorry for going on but I feel better for writing it all down.

E-mail Meg: [email protected]

The tale of...Chloe (6 November 2009)

I have recently been diagnosed with irritable bowel syndrome after months of wrong diagnoses! From stomach ulcers to endometriosis...I have had a gastroscopy done, four scans and I almost had a laparoscopy. My symptoms are stomach pain, bloating (the worst part), diarrhea and constipation and I have had these symptoms every day for the last four months. I was given Colofac which made my symptoms so much worse! Now I am trying psyllium husk (Metamucil) and Movicol. Hopefully I will find something that works for me soon, and good luck for the rest of you.

E-mail Chloe: [email protected]

The tale of...Kelly (6 November 2009)

I began to have symptoms of IBS in 7th grade. At that age I thought the noises my body made occasionally during math tests or silent reading time was because I was hungry. I'd never heard bodily noises that sounded like that except for when I was hungry - I didn't know what else to attribute them too.

I had always been extremely active, involved, and was always busy with something. Dance since the age of three, soccer since 3rd grade, poms and cheer in middle school, cross-country and track, true camping (not in a camper with a bathroom) multiple times a summer, trips and traveling, sleepovers all the time with my friends. I was very lucky to be healthy enough for all that.

In 8th grade I began to get anxious before cross-country races. I don't know if nerves caused my stomach aches, or vice-versa, but either way, I stopped running races. Then my first 'episode' happened. During a weekend soccer game I had such bad pains and cramps that I couldn't stand up, let alone run around and play. Halfway through the game my Dad drove me to the library two minutes from the field, and I spent a very long time with horrible diarrhea. By the time we drove back, the game was over. I told everyone I threw up because diarrhea was too embarrassing.

In 9th grade things became unbearable. I had math class the last period of the day, and every day my body made loud gurgling noises because of gas or diarrhea. I couldn't even use the excuse of being hungry because lunch was only two periods before that. During one test I had to go so bad and everyone kept staring because the noises were so frequent - but my teacher wouldn't let me go to the bathroom.

I found out that year I had IBS and was also lactose intolerant. This made life horrible, because almost everything I ate needed to be cut from my diet. All through high school my stress increased, partially from trying to hide my IBS, and so my IBS got worse, and the cycle just kept going. At the end of high school, I was no longer running, I stopped playing soccer, I hadn't been to a sleepover since 10th grade, I stopped camping, I only traveled with my family (too embarrassed to use the bathroom if my friends could hear), and I was planning my careers around which ones involved constant silence (where the noises would be noticed) or too much travel where there may not be enough consistency as far as food or bathrooms.

I'm now a sophomore in college. I survived my first year living in the dorms because there were only 20 girls sharing our communal bathroom which evens out to be usually one person in there at a time what with classes and activities, and with electric hand dryers, if you pressed the button no-one would hear the gas and diarrhea. It was still extremely embarrassing. I'm in a three-bedroom house now, and I love my two roommates, but am still too embarrassed to tell them. I use the bathroom when they're not here, or turn on the shower so they don't hear my bathroom noises.

I'm surviving, but I do miss classes and every day I can't spend as much time in the library as I need to because I'm running to the bathroom at any given time. And although he won't say it, my Dad still thinks it's all in my head. Sometimes I start to think maybe it is just because at least there would be a solution.

I'm still planning my life around this. I would love to study abroad, but how can I explain IBS to a host family, or go on weekend trips that may take hours on buses with no bathrooms? I still have those days every few weeks when I'm doubled over in pain, when I'm sitting on the toilet for hours at a time thinking that I would rather be dead than live like this.

I'm thankful that I don't have cancer or a disease that will end my life, but living life like this, is it really that much better? I know this is a horrible thought, and I wish I didn't think it, but some days I secretly wish I did have cancer, because at least I could tell people about it, at least people would understand, and if I did die, I wouldn't be in this constant pain and state of distress.

E-mail Kelly: [email protected]

The tale of...Barbara (6 December 2009)

This all started about a year ago when I suffered with stomach acid which seemed to come on after I ate white bread. That suddenly stopped to some degree about five months ago when I became bloated but didn't know what was causing it. Things progressed very quickly to where I was getting diarrhea along with the bloated feeling and occasional stomach acid.

I went to the doctors who ruled out gluten intolerance, and I have recently had tests on my liver and kidneys as well as a full blood count (whatever that means). I have two different kinds of tablets I can take, Mintec or Colofac. I find Mintec works better, but I keep forgetting to take it and it repeats if you take it after eating rather than before, and you can't drink on it as it causes side effects.

I find that, when my stomach feels a little off, a glass of red wine works wonders, so I tend to take the Colofac, which doesn't work as well as the Mintec. If I eat bread, pasta, pastry or cereals not only do I get bloated, I have diarrhea, dreadful wind and I come out in spots, really unsightly ones on my face and in my hair. I've decided to eat wheat-free but am finding it difficult. I can't find wheat-free pasta and bread I like. The only bread I can find you have to toast and the pasta falls apart whist you're eating it, it's quite of-putting.

The company I work for is very small. There isn't enough space or call for a microwave so I'm having to take salad to work every day or eat normal bread or pasta along with my tablet and suffer. I need ideas on where I can purchase decent wheat-free bread and pasta and food ideas I can take to work with me.

E-mail Barbara: [email protected]

The tale of...Maura (9 December 2009)

I would just like to be part of a community of people who have issues just like mine. I have suffered for five years from terrible IBS. I have had three doctors tell me they have never seen it so bad in someone who is 28. I caught c. diff. from an antibiotic almost four years ago, and it has been hell ever since.

I can't eat many things because I vomit all the time. I have to use the bathroom five to 10 times daily. I can't hold a job because I am in the hospital for dehydration about once a month, maybe once every two months if I am lucky. I get terrible flares that cause incapacitating pain, and I feel like I have been written off for many years. I have seen about 10 GI docs, and I have finally found one I really like. He is amazing and helps with what he can, but I take Librax and phenergan along with amitriptyline and Ultram on a daily basis for spasms and pain.

I would just like to be a normal 28 year-old with no issues. I know, we all carry a cross, but this one is getting heavier and heavier by the day. If it wasn't for my husband believing in me, and being there for me, I would be lost. So please, if I can join and share my story with others and talk to others who have been through this, I would be grateful. Thanks for your time!

Update on Maura...

I thought I would give a description of my symptoms in more detail, since the more I read, the more detail I realize people have given on this site. I guess at first I was a bit embarrassed, feeling like maybe it was all in my mind, or that I was over-reacting, but now I know, and I understand there are so many out there that are just like me.

As I write this, I am experiencing a flare of IBS. I have vomited 13, yes, 13 times today. I can't hold anything but rice pudding. I know I am on my way to dehydration because I have also used the restroom seven times today. I am dying of thirst, and can't keep down water, ginger ale, tea, nothing. I keep trying and it keeps coming up. I have seen many GI doctors, and I have one I really like, but he is just a general GI. He referred me to a specialist at the Cleveland Clinic here in Ohio. What a joke that was. She took a history, which is strong for colon cancer on both sides of the family. My father died of the disease at the age of 34. I'm about to be 29. My mother's side carries the colon cancer curse too.

At first when I began to have these symptoms, five years ago, they thought it was because my gallbladder was not functioning and it was removed. This helped nothing. Then two years later they removed my appendix, again with no relief. Finally after much persisting, and countless hospitalizations, I was genetically tested for the gene that causes colon cancer. To my relief I do not carry it, but I do carry the mutated gene that causes polyps in your body. It's called polyposis, and at any time a polyp can turn to cancer. This scares me to death.

In the past two months I have been in hell. Diarrhea every day, at least five times if not more, and no matter what I eat after 3pm I vomit profusely. I cannot eat dinner at all, and it is very trying. I am in pain all the time, it is just a matter of if I can handle it or if I need to go to the ER for relief. But when I go to the ER I just get passed off as a drug-seeker and given phenergan. I take that at home, and have the suppositories as well.

When I go to the ER I am expecting help, and most the time I don't get it. It has gotten so bad that I had to get a mediport inserted into my chest for IV access because all my veins are worn out from IV use for the last five years. This gives access to give me meds and fluids right away. The issue with that though is that it is not working like it should and it keeps getting occluded. I am going for a second opinion on this, because they are still sticking me for blood draws and putting IVs in my neck. This mediport isn't functioning the way it should. Go figure, just another thing that isn't in my favor. I'm feeling very frustrated, and like my entire life is crashing down on me. I am now suffering severe migraines that are incapacitating. I don't know if this is lack of nutrition causing this or not.

I take Librax, phenergan, and I was taking amitriptyline but that has been discontinued because my dream is to have a child, and I am trying to wean myself off meds I can live without, and my doctors are helping me. I do take Ultram for pain but sometimes I feel as if it's just like eating candy and it controls nothing. I wake up with cold sweats, I go to bed curled into a ball because of the pain. I feel faint and very ill, as if I am going to pass out. My hair is falling out and has gotten terribly thin. I have a bloated stomach most of the time that I can't control, even if I don't eat during the day.

I can't hold a job because I am an x-ray tech, and no hospital wants someone who is sick and in the hospital all the time. I can't get disability because according to Ohio, IBS is not a disease that qualifies for it. It's so hard and frustrating, and I thank God I have my husband, because no matter what, he stands by me at all times. I am very lucky for that.

I do blame a lot of this on a severe c. diff. infection that almost took my life three years ago. I was in multi-system organ failure, with a temp of 106.7 and pus around the heart, brain and kidneys. This went undiagnosed for two months, and when they did figure out what it was I had two days to live. I am lucky I did live as they had given me my last rights and basically told me I was going to die. They told me that if I didn't improve in 24 hours they were going to remove my entire colon. I told them to let me die if that was the case. Lo and behold, slowly things began to turn around and after nine days in the ICU, and nine days in step-down, I went home.

It was after that c. diff. infection that things got out of hand. I can't tell day-to-day if things are going to be OK, or if I will end up in the ER, or if I will just have a really bad day. I am scared to death right now to let my doctors know that for two months I have not been able to hold anything after 3pm. I don't want to ruin xmas for my family, nor my in-laws, so I will continue in this state and maybe after xmas talk to my doctor. I'm scared to be admitted to the hospital, as last time I was there they told me they wouldn't give me anything for the pain, which was terrible. I writhed and cried and dealt with horrible attacks of pain, wishing the whole time for death. But death doesn't come, and eventually I am sent home with no answers, no help, nothing. And it is there I sit feeling helpless and terrible.

Is this in my head? I am on anti-depressants, and have been for 12 years, before this whole IBS deal began. Yet still I suffer from anxiety and terrible physical pain. I double over at times, and sometimes I just rock back and forth and cry. I feel this isn't normal for someone who is 28. I don't feel that age. I feel so much older than that. I have body aches, get frequent UTIs and most of the time have no desire for anything intimate with my husband. I feel horrible for this, and I do force myself at times, to keep him happy! I just grit my teeth and deal with the lower abdomen pain.

I have been tested for endometriosis and I do not have that, thank God. I don't think I could add too much more to this list of insane issues. I just want to be normal and have my life back. I don't think that will ever happen, but I hope maybe this story has helped someone else with issues who is afraid to come forward, or who maybe thinks there is no hope. There is, it is out there, I just need to find the right doctors and have the right care for this horrible demon that haunts me.

E-mail Maura: [email protected]

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