An introduction, waiting for a diagnosis

Hi Im Lisa and Im 40 years old and a stay at home mum to my daughter Scarlett who will be 2 next month!

Where to start! There is so much medical history with me!

In 1993 I was told I had irritable bowel syndrome and have had boughts of problems for years and thought it was all just this.

In 1998 I was diagnosed with Chronic Fatigue Sydrome and Fybromyalgia and I have had intermitted problems with this since that time, sometimes being very well and other times being seriously ill and wheelchair bound.

Since 2004 I have not worked because of the CFS, but I had a period when I was pregnant when things were great and I had few symptoms, sadly once she was born things rapidly reversed.

For 12/18 months now I have had shall we say significant bowel issues as well as what i thought was significant cfs.

Ive had a sigmoidoscopy that came back clear. I then moved house and took a while for me to get a new consultant. He seems very good and has done bloodwork, all clear, stool samples have all been ok, have had a ct scan, which was clear and then a gamma scan (cant remember the name) but its where you take a radiactive pill and have two scans 24 hours apart, they were clear too (apparently this was as I had my gall bladder out and there can be an issue with a bile duct afterwards)

The upshot is I am having a colonoscopy tomorrow and to be honest dreading it. Having taken the Piccolax today and spent most of it on the loo, its hasnt been my idea of fun!

Ive recently had a heart attack and have a problem with low blood pressure and a very low heart rate and seeing the consultant on what to do about that, we were looking at a pacemaker but now not so sure. I have to have a high salt diet to stop me blacking out all the time, and Ive seen something about a high salt diet being bad if you have crohns (which I think i have).

Im on the loo up to 40 times a day, 5/6 times is a very good day, fatigued, pains everywhere (cfs or not?) feel nauseaous with all the stomach pain, and get very very hot.

Oh Im also on Vit b12 injections as not long after I had my daughter it came back i had a deficiency with that but not anemic.

My weight has been up and down over the years, my appetite can be either non existent or completely ravenous (not sure if some of that is mood related).

Ive not started having "accidents" so have to be careful where I go and what I do with my daugther and its getting distressing. Its not her fault her mum is such a mess and we cant always do the things other children do.

So waiting to see what the colonoscopy brings tomorrow and hopefully some sort of diagnosis.

But does this sound like crohns to you? If not any suggestions:sign0085:

Hi Lisa and welcome to the community

Ugh, I'm so sorry to hear of all the health problems you've been having. That's terrible

It MAY be Crohn's disease but other ideas that come to mind are Microscopic Colitis and Celiac Disease.

What do they think caused your heart attack? Have they tested your potassium, magnesium, and vitamin D levels? What stool tests did they do?

Please keep us updated as to what they find with the colonoscopy. And you may want to check out our Undiagnosed Club. They are a great group.

Welcome to Crohnsforum Lisa.
I too am sorry to hear about all of your health problems. I hope your physicians can resolve your situation soon.

There are many people on the site with Inflammatory Bowel Disease, including Crohn's, that also struggle with co-morbid conditions such as: CFS, cardiovascular problems, Fibromyalgia, etc, as well. Unfortunately Crohn's disease can vary dramatically between patients, as can associated conditions. Generalized and Chronic Inflammation can wreak havoc on the body. As David mentioned, Vitamin deficiencies can play a major role in the Immune response and I would be curious what your levels are. Many members have also seen improvement in symptoms with dietary changes, and/or medical and surgical treatments. Have you been tested for the NOD2 gene mutation? It is one of the major gene mutations known to contribute to Crohn's disease.

Whether you end up with a Crohn's diagnosis or not, I hope you find effective treatment quickly and are feeling better soon.

Welcome!

Hi,

Thanks for coming back to me. As for the heart attack, i wasnt aware I had had it. There is some scaring on my heart which indicates it, im told it was mild. Ive been under a tremendous amount of personal stress so I will bet it was down to that, still waiting for tests and seeing the cardiologist on wednesday.

As for the colonoscopy I was told there was some inflamation and they have taken biopsies from 4 different places and have to wait 6 weeks to see the consultant, which feels like a lifetime. I was hoping i was going to get a diagnosis on the day so rather gutted that it didnt happen to be honest.

Id heard of a vitamin d deficiency in chronic fatigue and Im sure at some point ive been tested for it in the past but no time recently, so may be worth another try.

Judith, I had not heard of the NOD2 gene mutation but have looked it up and will mention it when I am at the doctors next and then with the gastroenterologist!

So shall see what the next few weeks brings!
Lisa

Please keep us updated as to how you're doing and what they find. And by all means, ask any questions you have, the people here are always happy to help.

Lisajc said:

Hi,

Thanks for coming back to me. As for the heart attack, i wasnt aware I had had it. There is some scaring on my heart which indicates it, im told it was mild. Ive been under a tremendous amount of personal stress so I will bet it was down to that, still waiting for tests and seeing the cardiologist on wednesday.

As for the colonoscopy I was told there was some inflamation and they have taken biopsies from 4 different places and have to wait 6 weeks to see the consultant, which feels like a lifetime. I was hoping i was going to get a diagnosis on the day so rather gutted that it didnt happen to be honest.

Id heard of a vitamin d deficiency in chronic fatigue and Im sure at some point ive been tested for it in the past but no time recently, so may be worth another try.

Judith, I had not heard of the NOD2 gene mutation but have looked it up and will mention it when I am at the doctors next and then with the gastroenterologist!

So shall see what the next few weeks brings!
Lisa

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Please keep us updated. And I hope you are feeling better soon!