March 2006 Archives

I have just heard some appalling news from the IBS Self-help Group bulletin board, where I am a moderator. One of our members, a 13 year-old girl, has died following emergency surgery on her bowel.

This is tragic news in itself, but what makes it even more terrible is the way in which she was treated before she died. Doctors told her that her illness was psychiatric, and because of this assumption they failed to properly investigate her problems.

This is my heartfelt plea to the medical profession - call IBS a psychological disorder, tell us it's all in our heads, well that's fine - but please, please make sure that you have diagnosed the patient correctly, that you've made sure that it's not celiac disease or endometriosis or lactose intolerance before you leap to the psychiatric conclusion, and that you then offer some solutions. A pat on the head and a reassuring smile really ain't gonna cut it anymore.

I have reproduced below a quote from one of the 13 year-old's last posts. I hope she wouldn't mind me quoting this here, as a tribute to her and also as a warning to anyone who makes lightning quick assumptions about what really lies behind our symptoms.

This is also a warning to patients: if you have symptoms this severe, always, always ask your doctors for further help. Weight loss in itself should have been a warning sign, as it's not usually a symptom of IBS; and anyone who has pain so bad it makes them scream deserves a lot more than a psychiatric referral.

"I am 13 and three months ago I started vomiting after eating, vomiting in my sleep, having severe pain in my abdomen making me unable to walk. I lost about 30 pounds. I went to my doctor and he explained that my pain was psychiatric without attempting to help me. I was basically wasting away by the day.

He sent me to be evaluated by an eating disorder clinic because he told me that usually people who have head problems like IBS have other psych problems (SO untrue). Of course I was told that I did not have an eating disorder and my doctor still told me I did. One night my pain got so bad that I was screaming bloody murder. I was taken to the ER and admitted to the hospital that night.

It turned out my doctor was wrong, I have chronic infection in my gallbladder and appendix. I was in the hospital for four weeks and got extremely sick. Because of my IBS and the stereotype put on it I almost died."

I just received an email from an IBS sufferer, which contained the following quote:

"The last doctor I spoke to told me that it sounds like IBS and it's all in my head and I just need to change my eating habits and think I'm healthy and it will all go away."

Do you see the kind of tripe we IBS sufferers have to put up with? Do you understand why we might get a little miffed from time to time?

OK - here's my letter of response to the doctor who sent in comments about my Top 10 Stupid Things to Say to an IBS Sufferer article. I'm also sending this letter to the IBS Network, who published my article and the doctor's subsequent comments. And if anyone reading this has any comments I would love to hear them - just click where it says 'comments' at the end of this blog entry and let me know what you think!

Dear IBS Network,

I'd like to thank everyone who responded to my article about the Top 10 Stupid Things Said to IBS Sufferers. I was very pleased to get such a good response from other sufferers, and to know that it's not just me who is upset - and sometimes completely baffled - by the things that people come out with!

I would also like to respond to the comments made by Dr JA in the March issue of Gut Reaction. Firstly, she pointed out that my Stupid Thing to Say number six, "Why don't you go to a doctor?", was actually an entirely appropriate thing to say to sufferers who had not received a definitive diagnosis of IBS.

I completely agree with this, and I hope that the article made it clear that "Why don't you go to a doctor?" is only a stupid thing to say to a long-term IBS sufferer who has in fact been to 20 doctors, 19 of whom have prescribed Colpermin.

Secondly, Dr JA also said: "I read with interest Sophie Lee's article. She seems to be a very angry lady and I feel that hypnotherapy may be of help for her to work through and release those pent-up emotions as they could be affecting her gut problems."

While I'd like to thank Dr JA for her suggestion, I did want to point out that not all of the anger was mine - a lot of the indignation was on behalf of the hundreds of IBS sufferers I hear from each month, many of whom are in despair at the way non-sufferers and doctors talk to them.

Some quotes I didn't have space for include "It's a women's problem, just don't wear tight clothes" and "Isn't the pain and diarrhea worth it for a special night out?" Both of these insights came from the very people who IBS sufferers rely on to help them: doctors.

Unfortunately, by immediately focusing on the idea that removing my apparent anger and "pent-up emotions" will help to treat my IBS, Dr J also highlights another reason why IBS sufferers sometimes get so frustrated. It is a story that I have heard from many, many sufferers. I call it the IBS Catch-22, and it goes something like this:

Patient: Doctor, I have been in pain for so long now with my IBS, I feel so angry/ anxious/stressed.

Doctor: Yes, your anger/anxiety/stress is causing your IBS symptoms; perhaps you could consider psychotherapy/counselling/a fortnight in Barbados.

Patient: But doctor, before I began suffering from IBS I wasn't angry or stressed at all, I lived a perfectly normal, happy life. It's the IBS pain that is making me angry and stressed. Can't we look for a solution to the pain, not the resulting emotions?

Doctor: No, because it is your emotions that are causing your IBS.

Patient: But I've only become angry after years and years of suffering, after years of being told that I have to learn to live with it, after visiting 20 doctors and having 19 of them prescribe Colpermin. And there's no correlation between the strength of my emotions and the severity of my symptoms. My IBS is as severe today as it was 10 years ago. It doesn't make sense.

Doctor: Ah - I see that you are becoming more emotional as we talk about this. Indeed, you seem very reluctant to accept the fact that your emotions are causing your IBS. This shows that you are repressing your feelings, and is a further indication that your pent-up emotions are in fact causing your IBS.

Patient: So you are saying that my overly emotional state is causing my IBS?

Doctor: Yes.

Patient: And the more I deny this, and the angrier I get, the more it proves your theory?

Doctor: Yes, that's right.

Patient: But how can I disprove your theory if the very act of arguing with the theory actually proves the theory?

Doctor: You can't I'm afraid. Sorry.

Patient: Isn't that a bit unfair?

Doctor: Oh yes. It's some catch, that IBS Catch-22.

Patient: ?!?!

The IBS Catch-22 needs to be put out of its misery. Theories of IBS causation are moving further and further from a psychological model with each passing year, and the leading gastrointestinal institutions of the world, including the International Foundation for Functional Gastrointestinal Disorders, now state categorically that IBS is not a psychological or psychiatric disorder, nor a disorder caused by stress.

I believe it is time that IBS patients were allowed to express strong emotions, emotions which are often related to years of dismissive and inadequate medical care, without having their feelings promptly identified as a cause of their IBS, rather than a result.

Sophie Lee
Editor, ibstales.com

I recently wrote an article called "Top 10 Stupid Things Said to IBS Sufferers, Plus the Reasons Why They're So Dumb" - stuff like "It's all in your head" and "Stop thinking about it and it will go away".

I had a very good response from IBS sufferers who could identify with the stupid comments, and the IBS Network have published some of the responses in their latest newsletter. One sufferer said "Hurrah for Sophie! Give her a medal and make everybody read her article!" So that was great, but there was also a comment from a doctor (Boo! Hiss! No, just kidding) who said:

"I read with interest Sophie's article. She seems to be a very angry lady and I feel that hypnotherapy may be of help for her to work through and release those pent-up emotions as they could be affecting her gut problems."

Leaving aside the question of how "pent-up" my emotions are if I've just written a two-page article about them in a national newsletter, this reminded me that I need to add a number 11 to my Top 10 list - the fact that IBS sufferers are not allowed to express any kind of strong emotion without being told that that very emotion is the cause of their problems, not the result.

I am not afraid to admit that I'm angry about having IBS for 16 years, but I certainly wasn't angry 16 years ago - I was the least angry person you could possibly imagine. In fact it took years and years of hard, straining pain to get me this annoyed. So there's no chicken and egg question here: the IBS definitely came long before the anger.

Anyone who has had to go through prolonged physical pain should be allowed to be angry without doctors then trying to blame the physical pain on the anger itself. If a doctor gets angry about something he is expressing his genuine feelings of frustration; if an IBS sufferer gets angry it is apparently just a cause and symptom of IBS. That's just not right.

I think it's also fair to say that any IBS sufferer who writes an article for the IBS Network should be able to do so without receiving unsolicited medical advice from someone she's never met...

I'm sorry, I'm getting angry. I'll go and have a nice lie down. That'll clear the IBS right up.

Sill in good phase thankfully. I spoke to my nutritionist yesterday about the CDSA results, and here they are:

Parasites - none found. This is good news as parasites such as blastocystis hominis, which are sometimes linked to IBS symptoms, can be very difficult to get rid of.

Yeast/candida - none found. This is also good as an anti-candida diet would have been even stricter, and candida can also be difficult to get rid of. Michael said that just occasionally the test may miss yeast overgrowth in some patients, but he didn't think that that was the case with me.

Friendly bacteria - I am fairly low on the good bacteria species lactobacillus and bifidobacterium. Not ridiculously low, but enough to show up as less then optimal.

Unfriendly bacteria - again, I have fairly high, but not ridiculously high, levels of the unfriendly bacteria klebsiella and bacillus species.

General digestion - small amounts of meat and vegetable fibers were seen in the stool, which indicates that I may have a deficiency of digestive enzymes or hydrochloric acid/pepsin. I was also low in n-butryrate, a short chain fatty acid. There were a range of other digestion processes tested, such as absoption of nutrients, and these were all normal.

So - there was nothing major there, certainly nothing to match the level of reaction I had to cow's milk. However, there are still several things that could improve, and so based on these results I'm going to take a small number of supplements, at least for a couple of months. These include a digestive enzyme, a good quality probiotic, a butyric acid supplement, and a black walnut tincture and berberine and grapefruit seed complex, which are designed to kill off some of the bad bugs.

I have to say that it's very nice to have a treatment plan that's based on some actual results, rather than the usual method where you go to a GP and they make a random guess about which drug might help you (and then the drug doesn't help you). Wish me luck!

OK, feeling a bit better now. Please accept my apologies for being Mr Grumpy-pants lately, but you know how it is. I think that I find it most difficult to deal with IBS when not only do I have to avoid loads of foods that I enjoy, but it also doesn't seem to make much difference - ie, I don't eat pizza and I still get sick. You start thinking "Well why don't I just eat the pizza?"

Still, stomach has improved and actually was perfectly normal this morning so at least that's something. Besides, I'm still in the middle of treatment here, so there's still a long way to go.

On the CDSA front, I was actually feeling too ill to go see the doc on Saturday, but he has kindly sent me the results through the post, and we're gonna have a chat probably tomorrow.

I don't understand a lot of the things on the results sheets (they run to about five pages) but it does look like I'm low on some good bacteria, and that maybe there are a few other issues going on as well. So hopefully that's another avenue to go down and look for some solutions.

I'd like to thank everyone who has left supportive comments and sent emails - it is really appreciated, and I promise I will try to drag myself out of the IBS pit of despair and frolic gaily into the healthy-stomached stawberry field of joy.

Well, as expected I've had some symptoms this week. Nothing horrific but some stomach discomfort and have been a bit bunged up. To be honest though I haven't been that kind to my stomach - on a couple of days I had a major lie-in, which tends to throttle the life out of my intestines however good I'm feeling.

The trouble is though that this IBS stuff often forms a major vicious circle. I had the lie-ins because I was feeling miserable about never eating any gluten or dairy ever again, and having to live on lettuce for the rest of my life. Then because of the lie-ins my stomach died, then because my stomach dies I want to eat tuna sandwiches and cake to cheer myself up.

I managed not to eat the tuna sandwich (or the cake), but my stomach's still in a mess. I don't know, I guess I just think that after 16 years of struggle I deserve a solution that is a bit easier than cutting out half the food in the world. But then life doesn't work like that, and IBS certainly doesn't. Oh well.

I'm getting the results of the CDSA test tomorrow - will let you know how it goes.