Help I'm not sure if it's crohns.

[Charlie174]

Hi,
I'm new here so apologies if I make mistakes.
I'm a 38 year old women and I have been suffering with right hand adominal pain for most of my life, I have been rushed in A & E with a suspected appendicitis on numerous occasions only to be sent home with pain meds. My symptoms are a stabbing/ poking pain on my lower right and sometimes the left side of my abdomen, my abdomen feels sore almost grazed all the time and this gets worse after eating certain foods, I feel sick and my sometimes bowel stops working, I have night sweats, headaches, joint pain, exhaustion, severe back pain, swelling, cramping and randomly hair loss. I sometimes have a couple of months with little or no symptoms. Some of these symptoms could because I have had a hysterectomy over 2 years ago.
3 1/2 years ago I was diagnosed endometriosis and they tried to laser it away but it didn't help with the pain in my right side. The consultant said that the only way to sort the pain was to have a radical hysterectomy which I had over 2 years ago. This eliminated some of the adominal pain but after a couple of months the symptoms returned. A year after my hysterectomy they went in again to see if the endometriosis had returned and they found my bowel had adhered itself to the top of my vaginal vault. A few months later they did surgery to separate my bowel from the vault and also removed a lump. Sadly after this my pelvic floor failed and my bladder and bowel fell into my vagina. 4 weeks ago I had a pelvic floor repair and TVT Put in. Non of this surgeries have fixed my pain and I'm still suffering.
Last Wednesday I was rushed into A & E with severe right side abdominal pain, soreness all over my abdomen, extreme lower back pain, constipation after diarrhoea 3 days before. They admitted me and did an ultra sound, blood tests and a CT scan. They thought it was constipation so gave me an enema which produced more diarrhoea and left me in agony. The CT scan found sacroiliitis but the consultant said this had nothing to do with my pain. He told me there was nothing wrong with me and that some people just have pain full stop go away and keep taking you pain meds.
previously I have had a colonoscopy which came back clear.
Everytime I eat gluten, fresh fruit, fresh veggies and anything with the skins on the pain increases. My bowel has stopped working again since coming home.

So here's my question:
I'm concerned that I still have these symptoms and don't know why. My partner and I talked about going private to try to get diagnosed but not want to waste money if this isn't anything that can be diagnosed.
Has anyone else had these problems and symptoms, if so could you maybe give me some advice on what I could do next?

I'm really sorry my message is long and drawn out and I'm really grateful for you taking the time to read it.

Thank you
Chantelle

 

[ronroush7]

Hi. I am sorry for what you are going through. I hope the doctors keep pushing until they find out what is going on. Please let us know.

 

[Charlotte.]

Hi Chantelle,

sorry to hear what you are going trough. To make a long story short: There is inflammation going on in your body (sacroiliitis), which may occur isolated but could also be related to another condition, such as IBD or any sort of arthritis. Are you treated for sacroiliitis? It can be super painful, I know what I'm talking about. Went to an arthritis lecture for patients and met some with sacroiliitis without proper treatment as well, a no-go, according to the rheumatologist there.

Apart from that, especially Crohn's in the small intestine can mimic some other conditions and can be hard to be diagnosed at times (was in that situation myself). Did you have MRI of the small intestine at an IBD specialist centre? A "standard" radiologist might know everything about knees, hips etc. for instance but if occasionally he checks MRIs of the gut for inflammation he might not see lining-thickening that could be harder to detect (lining-thickness differs from person to person and if the ticketed lining is still in the "healthy" range, according to his books, the might come to the conclusion that it looks clear but in fact it doesn't, you see? just naming that probability).

I know it it super hard in the UK health system to see an IBD specialist without private insurance but maybe you have the chance to be transferred to someone. Feel free to send me a direct message if you would like further suggestions, ideas etc.

Hope you find a consultant who gets behind what is going on