sad tales: women with ibs-d page thirteen
The tale of...Mandy (1 February 2005)
I am 27 years old and I don't remember a time in my life when I've had totally normal bowel function. However, just before I married, about three years ago, the symptoms escalated considerably.
Sometimes I feel like I am rambling on and on to everyone about my symptoms, trying to prove that I really am sick, even though I know they probably get tired of hearing it. It's nice to have somewhere to tell my story, just for the sake of telling it, and knowing that someone might actually be interested in what I have to say.
The pattern that I seem to have is constipation - not always total, some days I just know I'm not going as much as I should be. Then, after a few days of that, I get cramps and spasms so horrible that I've told my husband this has to be what childbirth feels like, even though we have no children.
On one hand, it makes me feel like I'll be able to handle labor pain. I have seen some other women on this site who have compared their IBS pain to labor pain, and it helps to validate my feelings. After the pain subsides, I am usually exhausted - shaky and needing to lie down. My whole body seems to tense up in an effort to fight the pain.
With the spasms I may or may not have diarrhea, but what I almost always have for sure is three to four days of severe soreness and bloating, with gas that hurts terribly as it floats around in there. My last attack left me doubled over, walking as slowly as possible, for half a day before I could stand up straight.
I have been blessed - and I believe it is the grace of God - that I have avoided having any accidents as a result of it, although I've had some close calls. Asian food (MSG?) for me is more or less off-limits now, as it almost always causes a near accident for me, before I can even get home from the restaurant.
I have some form of discomfort every day - gas, bloating, nausea - but I still basically live my life just as I would without the illness. It is an embarrassing illness, but I find that most people I have to explain it to are extremely sympathetic and polite. Long car rides and staying in other people's homes don't frighten me - I deal with them as they come. It has, however, caused me to miss enough work that my employer is working on some form of disability loophole so I can keep my job.
I've been given Bentyl and fiber therapy, which have proven to make the symptoms worse by causing gas, or causing other symptoms such as drowsiness which don't help me function normally any more than the symptoms do. I've had an upper GI and an ultrasound (my symptoms are terribly exacerbated by menstrual hormones) and I am scheduled for a colonoscopy. My guess is they'll find nothing but good old IBS.
I've heard a little bit about IBS causing weight gain, and I'm beginning to wonder about the merits of that theory, because I have gained 70 pounds since my symptoms began to worsen, and the last two times I attempted a weight loss program, I spent an entire month losing and re-gaining the same eight or so pounds.
Sometimes weight loss seems hopeless, because so many fruits and vegetables make me sick and if I get too hungry, I'm in pain. Also, the constipation-diarrhea pattern can make your weight vary so drastically from day to day that very few of my weigh-ins are encouraging.
Hopefully someone will see this story and realize they're not alone, they're going to be okay, and they can still live their lives. I believe God is a healer and I can only trust that He has a purpose for this illness in this point of my life. I pray everyone who visits this site finds a way to manage their IBS. Thank you for allowing me to 'gripe' about mine.
E-mail Mandy: [email protected]
The tale of...Guitargirl (February 2005)
I stumbled across this website in a desperate cry to find others who I can relate to with this depressing disease. My first IBS bout came about two years ago. I was going through a very stressful time and let's just say I had 'the accident'. It brought on an onslaught of anxiety problems with it.
Like so many of you, I too fear leaving the house. It is a nightmare. I only feel safe at home where I know there is a clean toilet and that I can relax. I refuse to car pool with people for those unexpected 'got to go' times that happen so often when I drive.
I work about 45 miles from home and I call in sick a lot. My job has been on the line. Traffic always seems to know when I have to go and I find that the more worked up I get in it when I have to go, the worse it gets. I refuse to eat out, and my fiance gets very frustrated with me because I won't go to social events for fear of having to 'go'. I sing and play guitar in a rock band and can't even hang around after a show cause usually I am so nervous I have to race home to go to the bathroom.
I also suffer from emetophobia, which is the fear of vomiting. I can't be around it, do it, see it, hear it. I have done it once in my life (knock on wood). I get the worst panic attacks if I am around it. I now feel as if I am becoming phobic of having the runs too.
This is no way to live. I can't enjoy a normal life. Every day my stomach is in turmoil and prevents me from doing a plethora of things. It is always on my mind...I'm going to have to go. My doctors say it's stress-induced IBS, they won't test me or anything unless I have black stool or blood in my stool. Damn HMOs.
I am miserable. I feel robbed of joyous moments in my life. I have tried altering my diet and exercise but nothing really has helped. You know those people that are 'autotrophs'? They don't need food or water? Sometimes I wish I could be one of them. Better yet, I wish my bowel movements would just magically vanish and I would never have to go.
I am beginning to ramble. I just wanted to thank Sophie for this wonderful site. I did find some good ideas from other posts that I am going to try.
E-mail Guitargirl: [email protected]
The tale of...Rachael (25 March 2005)
I have been diagnosed with IBS for about five months now, I wish I never had it. I cannot eat any citrus fruits at all, nor can I have any dairy. I dread going out for dinner with my other half, he understands but I still get quite embarrassed by the whole thing.
One time we went out for dinner to this really expensive place, I said to the waitress 'please no citrus', 30 minutes later she brings me my food with a huge piece of lemon on it, I was too embarrassed to say anything (did not want to make trouble, plus I did not want to wait another 30 minutes for my food).
So I took the lemon off and started eating. I was feeling fine for about 15 minutes, then all of a sudden everything in my head fell to my feet, I was getting sweaty and went all pale. When this happens I don't want anybody touching me (my poor boyfriend), then the cramps started, there is nothing much you can do but curl over and breathe through the pain.
After about 10 minutes breathing I had to do a dash through to the toilet. People were looking at me like I was crazy, finally I got to my favorite place and let it all out.
IBS is a condition which who ever has it understands, no matter how much people say that they understand they don't!
We have to deal with this day after day, some better then others, but still what person enjoys watching what they eat, and when they eat something bad who likes waiting to see when you are going to have an 'attack'.
Websites like this give people like me, whose grandmother tells her to 'rise above it', relief knowing that there are people through the same 'hell' every day. Thank God for public toilets.
The tale of...Mary Beth (March 2005)
I was diagnosed with IBS when I was 23 years old (but actually think I've suffered with it since I was about 10). I am now 51. Like so many others, I have no life because my family/friends/co-workers/doctors just don't understand.
I just had my fourth colonoscopy in a year because of severe diarrhea and bleeding. They never find anything - of course, IBS has no distinguishing clues unless you're in a flare up of colitis, Crohn's, etc.
I am never constipated - I have the extreme, extreme diarrhea variety. If I were ever constipated, I would think something terrible was wrong with me. The doctor started me on Lotronex, which seems to give some relief some days - but not always.
It is embarrassing to use the restroom in public and even my own home - what if I just went to the restroom and company came - the smell - you can't get rid of it. I'm paranoid. My youngest son tells me I worry too much about what others think. He says 'everyone poops', but the first thing he says when he walks through the door when he comes to visit is 'smells like poop in here!'
So, how am I not supposed to be self-conscious? I feel alone and isolated. I can eat something one day and not have any problems - but, let me eat the same thing another day and it will kill me! Sometimes it seems impossible to keep up with my job (I work as a medical secretary in the hospital). I desperately need a support group!
E-mail Mary Beth: [email protected]
The tale of...Becky (6 April 2005)
Just when you think your life is good, about to get even better, something strikes and your life takes a blow for the worse. This is my IBS life-altering story. It all started when I was just 16, a month before my 17th birthday. I started to have these horrible stomach cramps and thought my right side was going to explode. I remember the pain would wake me up and I spent the next two weeks in pain, not being able to eat anything or even sleep.
What I thought was food poisoning from red lobster turned into what I call the 'IBS Monster'. I didn't like the doctor's office, so I waited for a month to go in. And in that month I didn't step foot outside the house for fear of getting sick where there was no bathroom to run to. I mean, I was so embarrassed to not even know if I could hold my own bowel movements.
My doctor did all the tests: from taking vials of blood, stool samples, and a virus test. My liver was enlarged (hence the right side pain) and they did an ultrasound on me. I was prescribed Prevacid, and a long list of other medicine. At the time, I was starting my senior year of high school. I was involved in nine clubs, and the president of a community club, so I was stuck between all my AP courses, volunteering every day after school, and having this illness.
Finally, I was seen by a specialist, who I'm very grateful to for finally putting a name to what was wrong with me. I admit it was embarrassing to drop your pants and get probed by a butt doctor, and then get probed even more with a colonoscopy, but it finally gave me so-called 'proof' of IBS.
Having IBS is hard to cope with, but my friends were so supportive. However, after graduating from college my IBS got worse, and I've taken to 'hermit-like behavior'. I even stopped going out of my house, except to get the mail. I used to be on a course for being a neurologist, but IBS has ruined that option. So I find myself making web pages as the next option. Which has its benefits since the bathroom is right next door!
I just wish a 'cure' for IBS would be soon. I think all my 'good' days were spent getting through high school, so I only have OK, or bad days now. Having IBS is the pits! But I'm still hoping for a cure. If anyone just needs to vent about IBS, please feel free to email me. Thanks for spending the time to read this.
E-mail Becky: [email protected]