Undiagnosed and extremely exhausted. :(

[KatAttak]

undiagnosed and extremely exhausted.

hi ,

i hope i am doing this right. but i have been ill for a long time, in particular the last year, i have had a lot of problems lately, in particular mouth ulcers, pernecious anaemia and pains in my stomach area.

i have been repeatedly going to my dr for over a year asking about this and keep getting told different things, but recently one doctor has been my rock, and has pushed me through to getting a diagnosis.

i am told they are 99.9% its Crohn's disease, and now im quite lost. i have got books, ask people questions all the time, but still feel i have a lot to learn.

im really lost at the moment and would love some help.

here are a list of my prinicpal ailments:
right, where shall i begin?

stomach pains, cramping and stabbing pains,
running to the loo etc... as well as not being able to go.
bleeding and mucus? not all that often.

mouth ulcers, bleeding gums and burning gums.
painful tongue, ulcers on tongue.

waves of pains around my chest ( osophogas area)
blocked and painful sinus's daily
weepy and swollen eyes

bruises everywhere
nauseous all the time
weight loss

tiredness
waking up in the night due to pains

i have been admitted to hospital but they didnt rush to do much, i have a colonoscopy and the camera down my throat due the end of may.

i have noticed i am not able to tolerate fruit, especially smoothies.

any ideas? sounds like a lot of babble by my dr says its all related to crohns? anyone had anything similar?

and would also love to meet some new people.

thanks

Kat :dance:

 

[Cat-a-Tonic]

Hi Kat and welcome. Your symptoms definitely sound like they could be Crohn's. Although Crohn's mainly affects the digestive tract, there can be so-called "extra-intestinal" symptoms such as headache, fatigue, skin symptoms, eye symptoms, joint pain, etc. If you haven't mentioned all those symptoms to your doctor already, please make a note to mention them the next time you are seen. They may not seem like they're connected but they very well could be.

A lot of us have trouble with fruit and veggies. The problem is that fresh produce has a lot of fiber, and that's really painful and hard to digest when your intestines are inflamed. Low-fiber (also known as low-residue) foods are easiest to digest when your illness is active. Think white, bland foods. Stuff like mashed potatoes, rice, plain pasta, baked chicken or fish, bananas, soft white bread, etc. Try eating that type of stuff and see if it helps with your symptoms any, and then over time try adding more foods in. You can also keep a food diary to track your symptoms and see if you notice patterns with what foods trigger your symptoms.

I hope that helps a little! Good luck with your scopes!

 

[KatAttak]

Hey a cat-a-tonic. How are you?

Im sorry I haven't got back to you, been a bit of a mad few days.
Have you been diagnosed with crohns?

I'm a bit of a terror with food but have been advised more fruit and veg but it doesn't help at all? Is it true the best way to eat fruit is to have it all cooked?

Thanks
Kat

 

[Rebecca85]

When I was first diagnosed I found a low residue diet helped a lot. Cooked fruit was much more tolerable than raw, as raw fruit (or veg) is too crunchy- it scrapes your insides and can make already inflamed intestines get rather cross!

 

[KatAttak]

Oh right, that's really good to know! Did it take you a long time to get diagnosed?
Feels like I have been this way for so long as still have ages to wait to find out what actually is going on with me?

My dr is brilliant, but everyone else is making it impossible for me.

 

[Rebecca85]

I was lucky- I was admitted to hospital with suspected appendicitis or gallbladder problems. They ruled them out and sent me home but I was readmitted a few days later and had tests done as an inpatient- it dramatically speeds things up! And the weeks before I was really ill and taking lots of ibuprofen, so when they did the tests I had lots of inflammation for them to see.

Didn't feel very lucky at the time though!

I'm glad you have a supportive doctor- I went round all the doctors (including the students) in my practice before I found one who would listen to me regarding a different health condition.

 

[KatAttak]

i have been admitted to hospital as the pains were all up into my chest and i swear to god i could have collapsed with it. it was waves of pain.

the annoying thing is they were in no rush to sort anything out and meaning i have had to put everything on hold. life is really stressful with all this not knowing, i think i have had this for years, but it is now getting alot worse and alot quicker. i just wish i could get the diagnosis and sort it out.

and thank you, i owe my dr a few gifts i must admit, i had been fobbed off by every other doctor for over a 6 months, saying its just a virus, even with a mouth full of ulcers and its 'just a virus'.
i know what you mean about not feeling lucky at the time, how do you feel with it now? do you feel it has completely changed your life or is it something you can learn to deal with?

sorry to blabber on i have a million questions to ask.

 

[Rebecca85]

I think for the most part I've learned to deal with it. I'm on meds that work for me, so long as I take them and avoid a few trigger foods I live a normal life.

When I was first diagnosed it was a shock- literally a month before I was a perfectly healthy happy 20-something, and then I was hospitalised and given a diagnosis of an incurable condition. It took a good year or so to begin to come to terms with it. Helped by a course of antidepressants.

Then the wheels started in motion for diagnosis of my other condition- I was convinced I had MS and in light of that my well controlled case of Crohn's didn't seem so bad.

And then my boyfriend proposed at Christmas, so I have a wedding to plan, and now I'm pregnant so there is a baby to plan for too! I occasionally have a bit of a 'wobble'- what if I pass it on? What if I become ill and can't look after baby? But I think no matter what happens, I'll learn to deal.

 

[KatAttak]

Rebecca - congratulations that's fantastic news. It's so nice to hear some good news

I don't blame you for asking those questions but I admire your determination. I just want to feel normal, but this site is amazing. Really helps to know other people are willing to help etc..

So when are you due? If you ever need a chat you can always message me

I can see it taking a while for me to get my head around but luckily I have a few books and I'm constantly reading up. Just really scared about the scopes not looking forward to it. Did you have many symptoms?

 

[Rebecca85]

Thank you! I'm due at the end of October. And the wedding is set for next summer, I'll need to slim down quick to get into my dress!

My only real symptom was extreme abdominal pain- in the end it was bad enough to make me vomit (and I have a phobia of vomiting!) and I couldn't stand up or even lie down, all I could do was cry and writhe in pain. I was needing double doses of morphine before it even began to touch it.

I had a colonoscopy and it was a piece of cake! the prep really is the worst part. But there are lots of tips on here about how to make it less unpleasant.

 

[Cat-a-Tonic]

Hey a cat-a-tonic. How are you?

Im sorry I haven't got back to you, been a bit of a mad few days.
Have you been diagnosed with crohns?

I'm a bit of a terror with food but have been advised more fruit and veg but it doesn't help at all? Is it true the best way to eat fruit is to have it all cooked?

Thanks
Kat

Kat, I am also undiagnosed. My GP thinks it's definitely an IBD (Crohn's or colitis) but he can't diagnose me, and my GI can't find anything on my test results, plus he is a bit of a flake. He told me to my face he thinks it's probably IBD, but he wrote in a letter to my GP that he thinks it's IBS. I'm actually thinking of switching to a new GI because he can't figure me out and can't even make up his mind about what he thinks it is or what meds to give me or anything like that. He changes his mind all the time and just generally has been driving me crazy. I'm in remission because he put me on treatment, but I suspect he's going to take me off of my meds soon so I'll probably be back to square one again, and I'm thinking that would be an ideal time to switch doctors.

As Rebecca said, fresh fruit & veggies are high in fiber and can be problematic on an inflamed gut. If you remove the fiber by processes such as cooking or juicing, then it's much easier. So steamed or boiled veggies, juiced fruits, even canned fruits are easier to digest than fresh. Personally I have a juicer and I love it, I do a concoction of carrot & apple juice with a little ginger and it's very easy on my tummy and still very healthy.