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I need advice - possible Chrons?

Posted , 10 users are following.

Bex-the-Green
Bex-the-Green

Hi all, 

I am brand new here and awaiting my referral to the GI which is coming up in March. I would like to give you a run down of some of my experiences and symptoms I would really appreciate hearing from people with similar experiences and hearing any advice you may have:

- 6 years of IBS symptoms (both diarrhoea and constipation but mainly D during flares). This has changed and I feel much worse over the last few months. 

- Since Nov incredible pain which is always there but sometimes more intense right where my appendix is (they originally admitted me to emergency with suspected appendicitis)

- Years of pain in right side in line with navel which comes and goes

- Frequent urgency with D

- Sometimes constipation (especially when taking NSAIDS)

- Hard poo is usually very thin/flat - pencil/ribbon shaped

- Since last year fluctuating temperature up to 38 degrees

- Occassional heart palpatations

- Dehydration

- Blood and protein in urine

- Slightly elevated WBC and CRP (infection and inflamation)

- 7 sets of antibiotics since Nov which have done nothing

- Occassional blood in poo - bright red on wiping

- Blisters on inside of lips

- Fatigue and depression

- Blood filled blister appeared on butt cheek last week (not infected)

- NOTHING on CT scan

- Also, not sure if this is related, but last year my periods changed so I was not having a proper one but lots of spotting. Coil seems to have settled this down. I am mid 30's so it should't be menopause...

I have now been referred to gastro and urology because nobody seems to be able to help me and I feel like I am not being taken seriously by GPs. Has anyone had similar symptoms? Is it possible that Chrons does not show on a CT scan?

Sorry for the babble, but I feel like I am losing my marbles now...

Thank you!

Becky

1 like, 18 replies

18 Replies

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  • Teresa1223
    Teresa1223 Bex-the-Green

    Posted

    I was diagnosed with Crohns when I was 12 (over 30 years ago!) they used blood test, upper & lower gi (barium drink & enema, the worst!) & colonoscopy. My symptoms were severe cramps almost like food poisoning they would come & go like contractions 2, vomiting, high fever 103-104, high white count, severe anemia. I didnt have a problem with diarrhea until about 15 years ago. Never had a problem with constipation or bloody stool. I also had severe pain in the lower right side but not appendicitis. Back in the day if u had a flare it was prednisone (makes u bitchy, chubby faced, & FAT) & bowel rest, no food 1 week! Even when I was pregnant! This is drs at Mass General a very good Boston hospital. Now there are biologics like Humira (thank goodness, I havent had any side effects from it!). Ive heard stress on the body plays a big role on flares. I started symptoms at 12 (puberty big body stress!) My first surgery was in 92 10days after my son was born (another big body stress) , i had a ginormous abcess in lower right side. PLEASE let me give you some IMPORTANT ADVICE. DO NOT let the take any intestine out surgically unless it is ABSOLUTELY NECESSARY!!! I CANNOT STRESS this enough! Once they start cutting it NEVER ENDS! I have had 10 resections (also 4 surgeries for anal fistulas, another side effect of Crohns) and now Im in remission BUT suffering from all the side effects as a result of Crohns and surgery. I have 2ft of small intestine left, I have short bowel syndrome, chronic fecal incontinance (the worst!), osteoporosis with compression fractures in my back, I had a colistomy for a year which they said would solve everything (imagine taping a zip lock baggie full of diarrhea to ur stomach, its awful) i had it reversed after a year, I also have had chonic pain in that lower right side of abdomen where my pain started from all those surgeries, I have been on serious pain medications for over 15 years, its NO WAY TO LIVE! Also, if it is Crohns ask about oxylates. These are found in foods and some Corhns patients cant absorb them. They go 2 the kidneys and form stones. I am in renal failure now & on dialysis 3 days a week. Nobody mentioned oxylates to me in all the time ive had Crohns. You CAN control oxylates with diet. I just wish I had known before it was too late. Just please advocate for youself! Make sure you get a second opinion if they EVER wanna cut. I really hope they can find an answer for you but I hope its not Crohnes or UC. SORRY this is so looong! Good luck and keep us posted!

  • Bex-the-Green
    Bex-the-Green

    Posted

    I need help. I last updated saying that I was getting endoscopy and colonoscopy in a couple of weeks. Well that was fine until a few days ago where I can hardly eat and then started to vomit bile then blood. I know that's not normal but wanted to find out if anyone has had similar?

    Currently on a long drive but I think I should head to a&e as soon as I am back. Any thoughts? Feeling scared right now.

    Best,

    Bex

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