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Crohns support please - graphic and gross sorry!

red_head

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I'm really hoping someone here can help!
Ive not been diagnosed yet by I've had the calprotein test which has shown moderate/high inflammation, and blood tests show the same. My doctor has said she is pretty sure it's crohns.
I don't know where to start really. I'm sorry - this is probably going to be a very long post! I've been really suffering with depression and anxiety, I thought that was causing a lot of my symptoms as I've always had a nervous tummy. The last three years have been bad, with a couple of periods where things were very very bad in terms of my tummy issues. The past few months have been even worse - I have constant pain (generally in the left side, although the right side is more tender when actually touching it), nausea, a hard lump on my left side (which can sometimes be felt on the right slightly too), diarrhoea (most days going 4 times or more plus maybe once a week having to run to the loo to pass just fluorescent yellow water - sorry for being graphic), constipation at other times, and only being able to do tiny thin rabbit size stools, stabbing pains in my stomach which take my breath away, blood in the stool a couple times, and my stomach is really really really loud. It's so embarrassing - I can't do anything it happens whether I eat or not, if I need the loo or not, it's so loud and makes the worst noises, from growling to farting noises, bubbling, popping, it's insane. It's ruining my life. I can't leave the house, and am scared I will lose my job as I've had to go off sick. I can't take any medication as my doctor says without a diagnosis they may do more harm than good, so basically I just have to carry on like this?! The waiting list for the colonoscopy is until December at the earliest. I don't know what to do. I'm not coping and I can't seem to do anything to help. I've cut so much out my diet - only drinking water, I'm vegetarian anyway, but now avoiding dairy and eggs too, I've cut gluten out my diet, and soy. I'm avoiding too many vegetables. Nothing is making any difference.
This sounds ridiculous but I've always had a bit of a phobia of this anyway (mine and other peoples) since I worked with a mentally ill woman who had smeared it everywhere in her house - literally collected it and put it all over the floors walls, surfaces - it was so bad and since then dealing with even my own makes me feel a bit nauseous!
I've read the online advice about how to cope, and I cannot tell you how devestated I felt when the advice included taking a spare pair of underwear and a nappy sack. The thought of having to clean that up, or doing that in public makes me want to die. I'm sorry I know that is so heartless and I know other people have dealt with that, and I'm so sorry - I don't want to offend anyone but I honestly can't cope with that. I'm in floods of tears now just thinking about it, and I've barely left the house I weeks because of it, which is making my depression get even worse.
My husband and I have also been trying to get pregnant for four years, and have had three miscarriages - I've read that crohns can make getting pregnant and staying pregnant harder too, and I'm wondering if that could be an underlying issue.
Autoimmune disorders and bowel issues do run in my family.
I don't really know what the point of this post is. I just feel like the world is ending at the moment and I'm really really struggling. Any support or advice would be really appreciated xx
 
I'm sorry your feeling like this, unfortunately it is the case that until you have the cameras done then you won't have a diagnosis. do you know what your Calprotectin levels were? Have you spoken to your doctor about how your feeling? Are you under hospital care yet or still waiting for referrals. Maybe your GP could expedite the process with a letter.

My daughter went through a year of hell at the age of 6, She was diagnosed with IBD at 7, official diagnosis is Indertiminate Colitis as she shows both Crohns and Colitis charateristics.

I hope you get the help you need soon x
 
My daughter went through a year of hell at the age of 6, She was diagnosed with IBD at 7, official diagnosis is Indertiminate Colitis as she shows both Crohns and Colitis charateristics.

My daughter was finally diagnosed with the same at 5, also showing both characteristics.

Redhead I’m so sorry to hear what you’re going through. I don’t know where you live but it seems crazy to me with the symptoms you’re having that you have to wait until December for a scope. I hope you get some answers and relief soon!! :hugs:
 
Look up The Specific Carbohydrate Diet, I had years of undisguised digestive trouble after getting food poisoning while hiking in Chile. This diet was the only thing that worked to get my tummy back to normal. I was vegan but started eating meat and eggs again when I started this diet.
 

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