Wednesday, August 10, 2016

Giving up

I went to Dr GI last week.  I saw the doctor for approximately 9 minutes.  Long enough for him to question me (again) about why I can't tolerate bile salt acid medication - because he obviously never wrote it down or he thinks I'm lying.  Either way, it's bullshit because after all this time the man should know exactly what it does and why my body doesn't tolerate it.  After the same questions were asked, he ran down the reasons why he doesn't think I have active Crohn's disease causing my problems.  He said, yet again, that he feels my problem 'could' be bile salt acid diarrhea. He even said he thinks it 'could' be some Irritable Bowel Syndrome, but 'definitely' not Inflammatory Bowel Disease because the colonoscopy, EGD, CT Scan, Small Bowel Follow Through and blood work I had done last year didn't show anything.  My doctor looked at me square in the face and said, "go home and do what you can on your own to control your diarrhea with Imodium since you can't tolerate anything else. Your abdominal pain is from chronic diarrhea. There is nothing else to do."  And he walked out.

There. Is. Nothing. Else. To. Do. 

Control your diarrhea On. Your. Own.

Nothing. Else. To. Do.

I can't even write this without tearing up.  I can't even fathom that this visit to the doctor really happened.  The doctor I have trusted for years, the doctor that I chose after having gone through several other doctors, the doctor I trusted, the doctor I needed, that doctor literally gave up and walked out on me. 

So that's it then.  This is the best my health will ever be.  Nothing can be done.  No cause can be found.  No more treatments can be tried.  This is it.  How is someone supposed to handle it when they've been totally given up on?  Fight? Throw a fit?  Go somewhere else?  Why?  Why bother?  Why go through it again?  It's pretty clear that I'm some kind of medical marvel that defies the odds of all current Western medicine and the educational capacity of the field of Gastroenterology on a whole.  So who would be able to help?  I've been doing this dance for over 20 years.  I've been through, at least, 5 doctors that I can remember, not including random doctors that have seen my history or treated me at a hospital.  No one has been able to help or figure it out and now it's all been left up to me to fix myself. Control your diarrhea ON YOUR OWN.

Go somewhere else and fight you might say?  Why fucking bother?  I give up too.


BAM man said...

Hi Jenni. I've just come across your blog and felt compelled to write something. I don't suffer from Chrohn's, although I live with someone who does, but I have been diagnosed with Bile Acid Malabsorption (BAM) in the last year (I'm in the UK by the way).

A quick look at your medical history section tells me I've never experienced anything near the severity of what you're going through, or for anywhere near as long, but my own symptoms at their worst mean I have some basic understanding of where you're coming from.

You're clearly an absolute trooper and I admire you greatly for sharing your story for others to learn from and identify with. I'm a journalist, so passing on knowledge and information is very important to me.

In the spirit of sharing, a couple of weeks ago I was practically in tears as I faced the reality of desperately needing to go (and not for a polite wee) while walking to work in London. And I mean literally unable to take another step with the pain of trying to keep it in. Diarrhoea is a bitch.

I was saved from utter humiliation on the streets by discovering a public toilet was open near to me (some divine luck there). I'm a gentleman and it was a ladies toilet surrounded by stopped traffic on both sides with signs clearly marking it out as the ladies' loo, but by God if I didn't run down those stairs with glee and destroy the first porcelain throne I came across.

The gent's loos, I found out after, where just a few yards in the other direction. I think my mistake had been a cup of decaffeinated tea about half-an-hour earlier.

Having never really been aware of gut problems before my own started, I'm now amazed at how slow the medical profession has been in learning about them and developing effective treatments. Our understanding of the gut is as bad as our understanding of the brain it would seem. This needs to change.


BAM man said...

My story is that I had been taking Immodium (loperamide) about once a week for a year or more to control my symptoms before this stopped being an effective treatment and so I was forced to go to the doctor.

I had read about BAM and suggested to him that this could be a possibility (I also have Gilbert's Syndrome, which is pretty much benign as far as medical science is concerned but the doc thought it could have some link as it is a dysfunction of the liver) so he sent me for a SeCHAT scan and that came back as showing I did have excess bile acid. A colonoscopy came back clear and so I was given Questran (cholestyramine) as a treatment.

Have you ever been on Questran? I should think you might have. It's basically a powder that turns into a gloop that looks like wallpaper paste - and tastes not far off - when you add water. It was originally used for lowering cholesterol but has the added advantage of binding with bile acids to neutralise their affect in the gut. It's the only licensed BAM treatment in the UK as far as I'm aware.

It does help a lot. But the problem with Questran (and Immodium too), I find, is that it causes me to have bad wind and feel uncomfortable and full, which at its worst makes me not want to be around anyone. You can imagine how appealing a daily commute on a packed London Underground tube train is to me on those days. The side effects also mean I don't take it as regularly as I should and so I get the nasty diarrhoea intermittently. You know, the kind that makes you want to end it all right then and there.

Recently I have switched medication to Colestigel (colesevelam) which so far (touch wood) has been an improvement. It's a massive pill that does the same binding thing as Questran, though in a slightly different way I believe. It's main selling point is that it's a pill, not a powder you have to mix with water, so it's easier to take consistently (I'm in my late twenties and single so mixing a powder before a meal on a first date was never going to be a winner).

It's still early days - I'm only a couple of weeks in on the med's although I have trialed it briefly before - but I am noticing an improvement in my well-being. That's not to say that I'm not still a regular visitor to the toilet (probably an average of three times a day) but it's less urgent when I do need to go and food generally seems to be upsetting me less. Plus I don't get the same flatulence problems that I have on Questran (still do get some though - I'm trying charcoal pills at the moment for that).

I had a cold coffee this morning at work (not decaf) and it sent me running to the loo not long after so I was googling why (apparently it affects 30-40% of the population this way even if you don't have a gut disorder or disease) when I came across your blog.

I was sad to see you felt like giving up and also thought, just in the unlikely event that you hadn't already heard about it, that I would share my treatments for BAM with you in case they were something you might be able to try (assuming you hadn't already).

I've had low points myself over the past year, and have put my mother through some worry I'm sure, but we need to fight to get our problems recognised by our countries' medical professions so that people in the future who have the same problems as us don't face the same difficulties.

Don't forget, you're in the vanguard for this. You're doing good, just by being you and talking about it all. Keep up the good work.


Running Short said...

Hi Jenni, I am a 62 female. I hear you! I've had chronic inflammation and watery movements since I was 20 years old. Stuck with same gastro for 40 years.Over the years I have been treated with Asacol, bile salts, gluten free diet and biologics. Now I am on codeine and spend my day on the toilet or crawled up in a ball. After my last scope, he just shrugged his shoulders.
Since then it has taken me two years to be reassigned a new gastro. I am seeing a group of IBD specialists at the U of A, who have run me through copious lab work, scans and scopes. Still there was no defined answer. The specialist has a hunch that I have a genetic condition with low immune antibodies.This would mean monthly transfusions. My body is very tired, but I will not give up. I love my family so much. I hope you can continue to find some supports and determination to carry on. In Britain, researchers are administering a new vaccine that fights off a form of cow brucellosis that can manifest in people's gut. Look uo M.A.P.S research.

Andrea said...

So sorry to hear this. But I've been there! Yup after 3 doctors shrugged me off, couldn't be bothered. I know many people have had this happen. Change your diet. Please read through my blog you will learn a lot from what I've gone through in the past 19 months. I healed crohns and colitis using diet change, biofeedback, and homeopathy. I avoided prescription drugs completely and surgery.
Autoimmune disease is not understood by western medicine so they follow the books and then have no idea what to do. Follow along with me and believe me you will heal and get your life back!!!!

Love, peace & hope ~Andrea

Teresa said...

Hi Jenni! I have lived with severe crohns all my life. My doctors don't know what to do with me either. Im in financial ruin. I'm a widow with an 18 year old son who has to watch me struggle everyday because my doctors can't seem to figure me out!!!! wtf? i feel like we know more about the disease then they do. i could go on and on about the side affects i have of crohns and they look at me like I'm crazy. Remember your not alone in this dam journey of this horrible thing we call crohns. I have lost all of my family because they don't get it,and i only have a couple friends left but its hard for people who do not take the time to learn about it. Go to another practice. I f your near a big city try those doctors. I live 45 mins. east of Philadelphia so thats my next option. Lets face it we have a very misunderstood disease. Ive been in your shoes over and over and I'm frustrated mean and tired. Hell i don't even care about my punctuation while I'm typing this. Went in hospital July 5 and been on 40mg. of prednisone since because they don't know what to do. Im losing my mind and patience on this stuff. Please hang in there. I really do understand!!!!!!

Andreas said...

Hi Jenni,

I'm Andreas and am an american living in Germany. Currently I'm writing my experience I've had with crohn's disease in a German Blog to help others.
My home page is and eventually I will translate it into english and post the same blog in english. I just wanted to let you know that you should never give up. I have found many doctors to be somewhat insane. I would live to hear from you and maybe we can get something going together once I have written my ebook. One I have written it I will send oyu a copy and would like to hear from you what yo uthink about it. If ou like to contact me her my email address:
I wish you all the best and never give up to find a way to check mate this illness. I have had Crohn's since 1985 and have quite some experience. They took our half my small intestine as well as half my colon. It at first was very hard. I had a pouch for about 9 months and went through hell. It was very hard to get my life back, but now I have it back and want to Keep it that way. I hope to hear from you.

Natalie Baker said...

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dysauto mom said...

I feel your pain.I too have suffered from bouts of drbilatatkng volitis w/o a clear daughter suffered for yrs w/ serious symptoms of dysautonomia b4 she got some diagnosis.she is like u,she did a lot of her own reseRch.luckily so far she doesnt have colitis,but like me at her age,she has had IBS symptoms.Aftercsering many Drs,somecwho were insulting,patronizing,careless,she found hef mentor.Dont give up ur search.Kn her case it was an elderly researcher from NIH,who took her on for studies of her high homocysteine.He got her in the back of a study for that.But together they were able to study her othef symptoms.Eventually,long story short,we found she has mitochondrial disease.She doesnt produce enuff choline and her cells dont absorb whaf she has properly.
For myself,I too am choline deficient,but not as severe.My severe colitis prkblems stafted after I had been ex
Ised to a vidhs and was given a shot of depi medrol.the dr didnt tell me he was gi ing it to me.he turned around and stuck me w the needle.Thus began my as an olded person,I have relapses.and yes the drs can be rude,they dont want me tk kno anything about my illness.I had a very good,compassionate dr,who was opened mided,and willing to try different treatments.For example,one yr I was having the start of a bad relapse.After getting tests that didnf tell anything(later fjnding the tests I shud of had)he tried flagly and it stopped the colitis that time.was it crohns or cmv or even parasites.I will never know,but I waS graTeful after #months to go into remission.Hes retired now,but I am gonna find another opened minded dr.I juxt kno u have to kiss a lot of toads b4 u find ur price(or princess).Rite now I am relapsing a bit.over the holidays I ignore my diet.skmetjmes u feel deprieved.I do kno wen I dont eat wheat,I do feel much better.But u c other people eating croissants and u think why cant I.the other is as Ive gotten older I am less dairy tolerant.I found goat cheese thats soft(not runny)digests better.We r insulin resiztant also,so I need protein.and like many immuno challenged persons I hav a long list of food allergies,invluding beef,coconut palm sunflower safflower olive avocado tapioca kiwi peanut.these hav either tested positive,caused hives,or asthmatic.if my yeast is high,I am more intolerant.I can tell because my mouth gets sore or I get yeast rashes on my skin or toes.the sugar thing makes this more.caprylic acid,in moderation for me,since its coconut derived,garlic as u mentioned,kills yeast.also tumeric and quercertin is anti inflammatory.
you r ur best alley.u kno ur body better than any dr.u have to follow ur instincts,including if the dr seems dense,move o .I kno sometimes u hav to b diplomatic and or hold back too much info,to get some if them to listen.especially wen u kno u need certain tests.but ther r same drs u arent afraid of new dont give up.obviously I hav sleep issues too lol.gonna take some GABA now.if u can get mayo clinic or vanderbilt university to do a comprehensive ammino aacid panel,that info may help you.o and read ur own tests,drs often overlook low or high numbers on tests they dont undedstand,including my daughters research dr.I had several low amino acids,he didnt notice.buf his speciality was high homocysteine.goodluck honey.i will b praying for u