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IBS & chrones disease

User Profile: StrawberryPanda
StrawberryPanda April 7th, 2015

When I was 18 I developed lactose intolerance and was diagnosed with IBS. I've had multiple blood tests since (now 22) but they always come out normal.

i have every symptom for chrones disease but blood tests say otherwise. I have unexplained mucus and blood in my poo.

My friends gf, took her 5 years to be diagnosed with Chrones. She knew it was more than IBS. Like me her blood tests kept coming normal until one day.

drs don't listen to me :(

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User Profile: StrawberryPanda
StrawberryPanda OP April 7th, 2015

Crohns *****

User Profile: CaseysTea
CaseysTea April 7th, 2015

I had a similar problem - when I was 16 I started getting debilitating pains when I ate, vomiting, stomach pain I cannot describe, uncontrollable BM, one person even asked me if I was pregnant because of the pain i was in and how bloated my stomach was.

My doctor diagnosed IBS and was no help at all. For five years I was in agony, nothing worked, one day I could eat something, I'd think it safe and the next day I was horrifically sick. Finally at 21 I spoke with my mother, she mentioned an aunt with coeliac disease. So i bought some GF pasta and for the first time in years, it didn't hurt to eat. My friend sat with me and was really scared at how I was vibrating with fear it was going to hurt and it didn't. I ate GF for two months, no more problems felt fit as a fiddle. Went ot my doctor and he said that as I'd been GF for two months, the damage to my gut was likely repaired and that a biopsy wouldn't determine coeliac disease unless I ate GF again, deliberately causing me harm. I refused. We did a blood test and marked I was coeliac.

Doctors are more knowledgeable about the body in general, but YOU know your body in specifics. If you know something isn't right, don't let them fob you off. I did the same thing wiht back pain and now five years and four surgeries later I'm in chronic pain from a serious condition my doctor didn't diagnose because he said all tall people's backs hurt.

Take care of yourself!

3 replies
User Profile: StrawberryPanda
StrawberryPanda OP April 7th, 2015

Sorry you had to go through all that faff! So much unnecessary pain!

I have a back condition too! Scoliosis. Found out by accident at 21 from a chest X-Ray. Through primary school I complained of back pain but drs and teachers always fobbed me off. They said it was my fault, the way I sat, held myself up ect. So I then learned to not complain.

funny thing is that I had a chest X-ray at 14 too. There clear as day was the curve in my spine but nobody mentioned it. My mam managed to retrieve it. Id still be oblivious that I have it if it wasn't for that horrendous chest infection and wouldn't have known if I'd asked to the see the X-ray.

Nobody seemed it was odd that I can't bend down touch my toes, & one of my shoulder blades pokes out awkwardly.

2 replies
User Profile: StrawberryPanda
StrawberryPanda OP April 7th, 2015

Sorry meant can't even bend down to touch my knees and I can't sit up straight. In school I'd fall over when sitting on the floor.

User Profile: CaseysTea
CaseysTea April 7th, 2015

I had much the same experience - I was told it was how I stood, how I sat, rather than, as my current surgeon can attest, I stood and sat that way BECAUSE it hurt, not it hurting because i sat a certain way. It wasn't until after my first surgery, and me complaining it still hurt that my first surgeon finally sent my scans to someone else, expecting him to back her up that i was fine, that he identified, on 18 month old scans, three unhealed fractures in my vertebrae (i used to train horses which resulted in flying off more than a few) and a number of genetic abnormalities that one or two of would cause back pain, but the number i had with the broken back, meant I was in serious danger of my spinal cord being compromised simply by my own movement. I was furious. My first surgeon never once physically examined me in almost two years, fobbed my surgery off to a registrar and then refused to see me when I complained. horrible woman.

I'm very tall and I used to be overweight and you always hear 'oh my back hurts' or 'ooh back is killing me today' nad you hear it enough and you think oh well people's backs are meant to hurt. it wasn't until i literally couldn't walk, or feel from the waist down that my doctor finally listened to me after nine months of complaining and in the end it was my physio who took one look at me and sent me to A&E saying I couldn't go home. In two minutes she diagnosed a serious condition my doctor refused to see.

I'm a naturally very shy, easily intimidated person, raised to defer to people in a position of perceived authority and I used to very angry wiht myself for not insisting I get proper attention, that i not allow my doctor to look at me and not see past my height or weight. Rather than examine me properly, he instantly just diagnosed me that i needed to lose weight. Its really hard to lose weight when you literally can't walk. I used to be very overweight and lost half my body weight and yet my back hurt more when I was lighter yet my doctor wouldn't look past it.

One good thing I like to take from the experience of both my coeliac disease and my back problems is that i stand up for myself more, I'm less easily disuaded, I refuse to let doctors try to fob me off. If something good came from the continuing experience, at least its something!

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User Profile: AffyAvo
AffyAvo April 7th, 2015

I've suspected I've had IBS for a very long time. My mom has it extremely bad, so I've never had much for testing for my GI issues. With other medical problems, I have had testing for autoimmune and a bunch of other stuff, so that would help rule some other things out anyway. I actually suspect I have had hereditary angioedema abdominal swells throughout most of my life, but we never worried about them much and just figured IBS.

My doctor asked me to get a test for Celiac disease, so there's another stab at a vein, putting me one more closer to needing a port - I'm waiting for the bruise from my last blood test to go away and I might have more ordered this week, so the fewer times of hitting my veins the better.

She also suggested trying the FODMAP diet (link is what my doctor printed out for me, was aware of that particular link before she mentioned it). Not sure, I already have a bunch of stuff to deal with, as well as some food allergies and I don't really want to add in having to think it through for everything I eat. I also know some of the accepted foods on the list bother me (although that's not to say that the fermentable sugars aren't ALSO a problem), but there are other things on the no-no list that I suspect I am fine with. Hard to say without trying this.

Have any of you done this diet? Was it fairly easy to follow, even when eating out?