I had a lovely email this morning from a lady named Sarah, who wrote to tell me that she had finished reading my IBS story and wanted to let me know that she thought my "self-pity and cynicism" were "pathetic". She has "severe IBS-D" but she doesn't let it bother her, oh no, she just ignores it and gets on with her life like I should - in fact I should get out there and "experience the joy!"
Thanks for that Sarah, it's always good to hear from adoring readers. I've had a few comments like this lately, from the very special Ron who commented on one of my blog entries that I had a superiority complex (and who also believed that I was a pig in the trough of my own self-pity), to the anonymous chap who called me "stupid" because I used the word 'disability' in the same sentence as 'IBS', despite the fact that the American government doesn't classify IBS as a disability.
I live in England so as far as I know I'm not actually required to obey the classifications of the American government, so I let that comment get lost in the spam filter.
And now to Sarah, who I think was actually trying to make a positive comment about how I should not let IBS rule my life, but somehow thought that calling me pathetic was the way to inspire me. I might reply that someone who reads a 60-page story of pain and suffering and then immediately emails the author to insult them is at the very best rather unkind. Plus the young lady wasn't brave enough to leave her last name or email address, so I can't reply to her directly. So I'm replying here.
So, let's see if we can nip the Sophie-bashing in the bud, shall we? I shall now list some reasons why I am not in fact pathetic or self-pitying, and if anyone wants to argue then I expect you to stand up and be counted and at least leave your email address you scared little bunnies. Right, here goes.
1) There is a section of my IBS story which clearly addresses the fact that there may be some self-pity in the story, but that it needs to be there because it is a history of my IBS life, not a history of my whole life. IBS makes me miserable; lots of other things in my life make me happy. I don't write about them on my IBS websites, because my IBS websites are about IBS. With me so far?
2) And if you're telling me to get a life, ask yourself this - am I single? How often do I go out? What are my hobbies? What do I do at the weekends? What are my family like? Do I have a butler? And if you can't answer any of these questions, is it possible that you don't really know that much about me?
3) Do you realise that people get different degrees of IBS? Sarah believes that her IBS is severe, but how do you know my pain isn't 10 times as bad as yours is, my petal?
4) Have you read the study that found an "extraordinarily high rate" (the researchers' words) of suicidal ideation in IBS sufferers? Is that because we're all a bit feeble?
5) Do you have access to the emails that I receive every week, from people who are despairing, and literally crying as they write, telling me how they have lost their jobs and their husbands and they can't imagine how they can get through another day? You reckon these people are pathetic? I have firefighters who write to me and tell me that the pain of IBS is the worst pain that they have ever experienced, and women who say the pain is worse than labour. Are they lying?
6) Can you tell me what you have done to try to help other IBS sufferers? Do you spend hours each week answering emails and telling people about sources of support and trying to give despairing people hope? Do you help out at the IBS Self-help Group? Do you try to get publicity for IBS sufferers so that people are less embarrassed about their symptoms and feel less alone?
7) If you wrote down a whole history of your IBS, what do you think you would write about?
"I had a splendid attack of explosive diarrhea this morning, which I very much enjoyed - the feeling of randomly spasming intestines continues to be wildly erotic. In the afternoon I laughed and laughed as I attempted to pass an extraordinarily large bowel movement without shredding my melon-like hemorrhoids.
The absolute highlight of the day occurred on the way home, when I experienced a frightfully enjoyable episode of fecal incontinence just outside of Slough. You would not have believed the smell - my husband was almost retching it was so pungent. Another magical day!"
If there is anyone else out there who wants to call me names, go ahead. I happen to think I'm pretty strong.
wow!
I have to commend you on that one. Very well said. I dont understand those people who somehow seem to get a thrill by dumping all over someone else. Does it really make them feel better?
I want to thank you for what you write, your website and all of the time you devote to other people who share the condition, I wish more people were like you, the world would be much better off. And I sure as hell wish I could be as strong as you are in being able to do as much as you do! To hell with the Nay sayers..
btw.. the last bit had me in hysterics.
:)
Hey Sophie
Do not let these idiots get to you, there are dick heads in all walks of life, sorry to hear that your married i reckon your a good looking girl but all the best to your hubby, keep up the good work it has helped me heaps over the years
Andrew
Can everyone stop having a go at the one person who is actually not scared of hiding our IBS in the dark? This is the only site I could find that has helped me, without it I would still be stuck in that dark hole. So thank you Sophie, keep up the good work!
Good on you Sophie.
As you will know I'm a fan (in the admiration way, not the stalker outside your house way) and I think you're incredibly strong and very brave for doing everything you do.
This person has a heart of stone and the intelligence to match.
You've been nothing but honest in admiting that yes, IBS does get you down, but you're human as we all are, and you're dealing with things as best you can, AS WELL AS helping other people with the same issues.
This woman is obviously a complete ignorant moron and doesn't understand a single thing about yours or anyone else's suffering.
I'm very surprised that she did actually bother writing to you, I'm sure she should have been out rollerblading with dogs on a lead or something equally as fulfilling in her wonderful life.
Nameless woman - we are NOT AMUSED.
Pinky
x
Sophie - I thought you spent your whole life roller blading with the dogs and I do hope you take their poop scoops with you! Seriously though you make us all think and examine our reactions to the curse of IBS. We are all different - and at different ages and periods in life - perhaps to indulge a small amount of self pity occasionally is not a bad thing - it gets the thought processes going and helps one to appreciate that there many good things left in this life, so often dominated by the worry of the location of the nearest loo! Sophie tells us when she has a good day/week/month, and we commiserate when she has a down patch - which we all experience. especially at the beginning of being afflicted. I've trained my immediate family not to keep asking - out of the goodness of their hearts - how the old guts are - they know I will let them know if I get to a stage when I can't cope or want a pat on the back. Let the nutters that don't want their name publicised, wallow in their own misery and keep reading this site so that they can appreciate that we all cope in different ways - and are proud of the achievement.
I have had two babies...one "natural" and one by C-section, and I have also given "birth" to several kidney stones. I would much rather give birth by any means and would also rather pass a kidney stone than have an IBS attack. People do have different pain threshholds and different degrees of IBS, so who is to say exactly how painful it is to any one person? My GI doc went into a long discussion about experiments measuring the level of pain by increasing the pressure in the GI tract of IBS and non IBS patients. The IBS patients reported much higher levels of pain than did the control group. I told him they could have saved a lot of money by just ASKING those of us who suffer with this "syndrome". I will never have another barium enema even though it only causes a "mild discomfort" as told to me by a colo-rectal surgeon. Needless to say he didn't do the surgery on me..totally out of touch with the reality of IBS..and he was supposed to be a specialist! I have been fighting with my insurance company for disability and will continue to fight. This is a disabling condition for some of us. If more of us stand up and fight, maybe the government will eventually recognize it as such.
I only spend Mondays to Fridays rollerblading with dogs. Saturdays and Sundays I jump off the edge of cliffs with no parachute.
(For the uninitiated, I believe the rollerblading with dogs thing refers to a particularly bizarre tampon advert which was on the telly a few years ago, where a women, apparently in the middle of her period, went rollerblading whilst being pulled along by dogs and looking ecstactic. Most women I know don't tend to do that during their period, or indeed at any other time, but some ad exec obviously thought that it would sell a lot of sanitary products.)
Thanks for the comments guys. It's difficult to know how to take some of these things, although I may have over-reacted slightly to Sarah's comment.
What I do know is that this is gonna be the last time I write about this sort of thing in the blog - it's pretty negative stuff, and most people really aren't like that in the IBS community. In fact, most people are very definitely NOT like that, and are incredibly supportive and friendly. The number of emails I get from people saying thank you for the sites is incredible, and always cheers me up when I'm having a bad IBS day.
If anyone ever does have any comments, suggestions or even criticisms I'm always happy to hear them - even if I've royally pissed you off I'd like to know about it. Just email sophie@ibstales.com and we'll see what we can work out. I don't pretend by any means to be right all the time, or to have superhuman knowledge. If I'm wrong, let me know, and I'll correct it.
If it's just insults and nasty stuff though, well, I'll just chuck it in the spam filter from now on. Life is too short to stuff a mushroom and so forth.
Hi
I have had IBS for more than 20 years starting when I had my gall bladder removed the old fashioned way via my abdomen!! About 6 weeks after my op, I started having symptoms and my GP diagnosed IBS. Over the years I have had every medical preparation in the book, barium enemas, scans, you name it. I always have urgency and diarrhoea and can be in the loo for up to an hour at a time. Sometimes it gets me down and sometimes I just ignore it although I am not happy if I'm not within reasonable reach of a toilet. I have squatted in some weird places out of desperation, including behind some bushes in the Canadian Rockies in bear country while on holiday while my husband whacked a nearby tree to keep bears away!!! I still laugh at that!! My husband and I love going on holiday all over the world including places like Borneo, Sri Lanka, Egypt etc and it doesn't stop us from enjoying our lives. I live with IBS, IBS does not rule my life.
Joyce
Bully for you Joyce - my sentiments exactly - I have just come back from a 3 week trip to the island of St.Helena and Ascension island, both bang in the middle of the Atlantic- admittedly I went well armed with Imodium etc. but except for one occasion, did not need to break into them. In fact, a SAfrican gentleman I met, who was complaining loudly about his 'spastic colon'- the SAfrican medics use this term, relieved me of some Imodium ( I wasn't using them!)and went away very happy !! Next? well.I am off next month to New Zealand for Christmas with my brother, and a family wedding - not even IBS. will make me cancel that - as you say Joyce, ones lives with and on the whole it does not take over my life.
To Joyce and anyone else suffering with IBS related to gall bladder removal. My IBS worsened significantly after my gall bladder was removed. Apparently it's related to the bile being released on a continual basis instead of being stored in the gall bladder and released with a meal. Anyway...a medication called Welchol that is intended to reduce cholesterol, has helped to reduce my attacks probably by 1/2. In "normal" people it can cause constipation, but for those of us who suffer with IBS-D, it can help. I just take the pills with me if I'm going out to eat and take them with the meal. It's worth looking into if you haven't tried it already.
Marti is spot on about the gallbladder thing - I've heard from loads of people who get IBS-D after having their gallbladder out, and it's because of the bile.
The most common med that people seem to take is Questran, followed by Colestid, and it really does seem to help people with bile-related diarrhea.
Sophie, as one who has (1) laughed (2) sniffled (3) commiserated and (4) felt totally supported as I read through your blog, I would say, just ignore this person! I am somewhat aware of the educational work you do, the on-line support, the outreach to those with IBS, and the baring of your soul and experiences on the internet, in print and maybe on TV, to me that says that you ARE a person who is living with IBS, as we all are. We all handle it differently; some days are horrible for me as for you, and some days good, and some days inbetween. If Sarah is able to mountain-climb in between bouts of unstoppable diarrhea, well good for her. I'm all for enjoying-what-life-has-to-offer. Sometimes when you're sitting in bed with a heating pad on, unable to get comfortable, feeling nauseated and making repeated runs to the bathroom (as I have for the past 3 nights) it can get a tad difficult to see just what that might be, but, I know we all keep trying. (by the way... emu oil is rather nice on sore bums, very soothing!)
We folks who happen to have this condition are just as varied as any other group of people, and none of us can really compare pain or the intensity of how badly we have symptoms with someone else's condition. I also get migraines, and it torques me something fierce when someone says "Oh, I have migraines too, had one just the other day at work. It really made me grumpy." Well when I have migraines I can't work, I can't speak, I can't sit up and make nice conversation, let alone handle typing, paperwork, lights, noise, thinking. Yet who am I to say that she didn't have a migraine? It's the same with IBS, in my mind.
I guess my meandering words are meant to say yes it was quite wimpy of this Sarah to not leave her e-mail following her rather judgmental words (synopsis: "Be more like me!") and, you've got lots of support in the IBS world. Don't let a few negative posts bring you down!
Hedgehog in California
I am shocked. I cannot believe that a sufferer would say something like that. We all have good days and bad days and extra bad days.. Its all about cramming as much in a rare good day as possible, cuz when your ill there is no way you can do the things you would love to do.. Does she not think that if we could we would? I hate being home and ill, but when ibs hits, it hits hard - and she as a sufferer should know that... Keep up the good work Sophie..
Hiya. As other people on this blog have said, don't let the doubters get you down. I've had IBS for years and luckily it hasn't been that bad, only triggered by stress but for me, these last 6 months have been pretty stressful so i've been ill quite a few times with it.
In a way she's right, you do have to try and not let it rule your life but having said that, i've recently been off work because of it!! Although i found what she had to say was very mean as it's not helpful for someone who, as you say, doesn't even know you to call you "pathetic" and that you're "wallowing in self pity" , that's just harsh and they obviously don't appreciate that people are affected by different levels of IBS, not to mention that it's caused by different things! Shame on you, nameless woman! Of course you can lead a fulfilling life just at your own pace. You tell a very inspirational story and I agree with the others who've left comments here in saying that you're a strong person, so keep it up :)
GOOD FOR YOU.
That's all I have to say :) Well done, my darling, kick her butt (that by the way, causes her much happiness!!!)
This site has help me a lot and thanks to Sophie for putting up this site. Before this I thought I was all alone in this world with my stomache problem. Now I know that there is others also having same problem and I felt much confident to move on with my life. What a relieve!
well doll wouldn't let it get to you your doing so many people a favour by having a website i for one am glad im not alone.posting everything that has made you want the ground to open up and swallow you whole i know i've had so many of those moments like telling someone very loudly when i was 16 just 2 years ago in the middle of a youth cafe my stomach is going to fall out my arse if i don't go to the toilet soon! being brave enough to show others the way to be brave! keep up the good work and you don't let people get to you who have clearly nothing better to do.
Hi,
I started suffering from ibs 5 years ago brought on through stress of a nasty divorce. I'm still discovering what food i can and can't eat. I was out in the middle of town one day having an ice-cream with a friend, big mistake, stomach started,had to get to a toilet instantly. ibs seems to rule my life, going out eating a nightmare.I stick to the same stuff every day. salad, meat,fish,veg. very boring.i panick when i go out incase i need the loo.the more stressed i get the worse it gets.given up on doctors.
Hey there,
Been an IBS sufferer for longer than I care to remember. But, was not diagnosed correctly until just the last 3 years. I took Questran, but that is a pain to have to separate several hours from an other meds. The colested is the same way. Now I take Welchol (4-5 daily) and I am doing VERY well. The main thing that seems to get me is MSG on Chinese foods and salad bars. I gave up salad bars but still eat Chinese from time to time. Welchol has been a life saver for me.
Hi,
I have been an IBS sufferer all my life. It has gotten worse the older I have gotten (45). Not until the last several years have I had a doctor that understands. She first tried Viokase (an enzyme) and it worked but not on a regular basis. In October 2006 she started me on Welchol and I can't believe the difference it has made in my life. I can eat anything out and never have to worry that a restroom is close at hand. I went on my first vacation in December using Welchol and it was the BEST vacation I have had in years. I am heading to Las Vegas in April and will now be able to eat prior to the 5 hour flight and not have to worry.
Just wanted to share my success story.
Sophie, I highly commend you for openly discussing your battle with IBS to help others. As a former paramedic, I have had many patients in my ambulance with IBS and far too often, most get embarrassed when talking about it. It is a serious medical condition and noone should be embarrassed in discussing it. Some of your sites visitors have found something that has helped them to a degree and hopefully, your website will continue to help others through the discussions on various forms of treatments.
For someone to say that you were pathetic and said they live with IBS just fine is sad. They write that they live just fine with IBS while criticizing you and the pain you live with. I just wonder if they don't simply have diarrhea due to bacteria in undercooked food and have confused their symptoms with IBS. Most of the people I know with IBS tell me it is very painful for them and more often then not, they are limited to staying at home and can not get out and enjoy many of the things someone like I take for granted and enjoy. With the high gas prices here in the U.S., I know one woman that drives a small RV everywhere. Not knowing, I told her she was crazy to drive an RV everywhere and she should get something a little more economical. I felt like a heel for saying these things when she told me she had IBS and the RV was more of a need then a luxury.
First, is because when she needs a bathroom, she needs it right now, and other times, she is embarrassed because of the odor and she does not want to offend anyone. She works at an elementary school and smaller children can be cruel in their comments just trying to be funny.
Good luck to all of you suffering from IBS. I applaud you for speaking out and sharing your experiences as well as some of the forms of treatments that have given you some relief.
Michael, thanks very much for your comments, and for all the help you have given to IBS sufferers! It's terrible to hear that you have had many IBS patients in your ambulance, although to be honest I'm not exactly shocked. A really vicious IBS attack would be enough to put many people in the hospital.
Most of the time the IBS community is a very supportive and warm place, but just occasionally I do hear from someone who would rather be judgemental, and who has decided that their version of IBS must be the same as everyone else's version of IBS, so if they can cope then so can the rest of us. Which is ridiculous!
I actually had a message the other day from a lady who said that IBS sufferers should never be considered for disability payments, because disability was for really sick people, not for people who had "tummy problems". And she had IBS herself...the possibility that some people might be more sick than she was apparently hadn't occurred to her.
OMG! that was very well written. I am the wife of someone with IBS and I am also a RN. I laughed very hard at this not at your pain but because some people can be so heartless and absolutely don;t understand what you are going through. if Sarah said she has IBS I think she is a liar because IBS is debilitating to those who have it that bad. I laughed as did my husband because you hit the nail right on the head. I was researching medications and all i could get on ibs to better help my husband so his condition wont continue to affect how he lives and he can have some part of a normal life. Thanks so much for all you are doing. B
People can be so demented. That Sarah obviously has mental probs.It's awful that good people that are sick have to deal with people like that. It's hard but you just have ignore the weirdos.Believe me I have to on a daily basis. People act like severe IBS is no big deal.