Anyone have issues with lower gut?: I had a... - Behçet's UK

Behçet's UK

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Anyone have issues with lower gut?

Brichel profile image
15 Replies

I had a colonoscopy today( prep is brutal) that showed very little but Dr. took a biopsy just to be safe. Have to wait a week for results. Couldn't reach illum which is where my pain is located. Said he might do a lower give with barium and at same do a scan to make sure all is well. It could be just IN A but I think I should really push for it. Any thoughts or similar issues?

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Brichel profile image
Brichel
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15 Replies
Brichel profile image
Brichel

That is a gi and could be just IBS. Hate spell check.

gillianTS profile image
gillianTS

Hi Brichel

Might be absolutely nothing like this at all but I wanted to say.

I suffered with low abdominal issues on and off for years, changed my diet removed refined carbohydrates which helped a little but still getting the abdominal pains all across my low abdomen, bikini line and later on and off shooting pains down my pubic area.

Things got a whole lot worse kept having to lie down I felt faint, sick and unable to move, I saw the Drs nothing diagnosed, then I had to see out of hours doctors, weeks later then ended up going to hospital as an emergency, by the time they did a CT scan everything had calmed down...

The CT scan showed I had an occult (hidden) inguinal hernia on the right. The pain was not through bowel or intestine going through the hole but from the omentum, the omentum is a sheet of fatty tissue that stretches over the abdomen, plays a surprising role in immune response and the growth of certain cancers. ... The organ is effectively a large apron-like expanse of fatty tissue that encases the liver, intestine and stomach.

Next I was told I was not an urgent case, not involving bowel, intestines etc. So after being discharged everything continued me having to lie down all the time until the omentum went back through the hole... decided to go private to the British hernia hospital in St Mary's London so flew into Heathrow and 3 days later I was back home.

The Consultant surgeon at the hospital could not locate my hernia, thankfully I had the hindsight to request a copy of the CT scan on disc from the NHS, he said he'd never ever not located a hernia in over 20 years and carrying out over 3,0000 hernia operations a year, he said he would never discount someone in the future without doing a scan. He told me the hernia may have been there all of my life. I had day surgery with local anaesthetic, very brave for me, got a picture 🙄 Thank goodness I got this repaired January 2018.

I do have gastritis and bowel issues which I put down to a slow bowel, I recently started taking one liquorice root capsule a day which has helped lots.

Hope you can get something sorted out soon.

Gillian 🙂

RayRay121 profile image
RayRay121 in reply togillianTS

I also have ripped my in that muscle right above my liver. Took over a year to DIAG it instead of the just being my liver inflamed. Pain management was the one who found it.

I started TPI treatments for it and it as helped a lot. I still cant sit for to long without it hurting but at least I can get out of bed now. Nothing ever showed on the CT for me though.

gillianTS profile image
gillianTS in reply toRayRay121

That is interesting RayRAy121 thanks for commenting.

Zuzu798 profile image
Zuzu798

Hi sorry for your pain. I have major pain in my left Illiac Fossa. After a colonoscopy the only thing found was the diverticuli that was also not major according to my Gastro. However the pain persist. They have ruled out Gyno too. So now the only other diet I am on is for IBS as I was before. I hope they find your problem. Pls let me know what your diagnosis is. X

Brichel profile image
Brichel in reply toZuzu798

Definitely will.

DR_JAB profile image
DR_JAB

You need a small bowel MRI which will show up the ileum. I have had ulcers in the terminal ileum from my Behcets.

Brichel profile image
Brichel in reply toDR_JAB

Speaking to Dr. tomorrow. I am his first Bechet's patient. What kind of treatment did you have so I can speak to him with some intelligence? I live in the States and Bechet's doctors are even more rare than the disease.

DR_JAB profile image
DR_JAB in reply toBrichel

I'm on loads of drugs colchicine, azathiaprine, humira, prednisolone and hydroxychloroquine. Some special diets help too no gluten and FODMAPs. I see a gastroenterologisr in addition to rheumatologist (and many other specialties) how did your appt go?

Brichel profile image
Brichel in reply toDR_JAB

Waiting for biopsy results. Left message that I would like a lower GI with MIR. Receptionist was a grump. Going to call back today. Will post when I find out.

Kitty790 profile image
Kitty790

I agree with Dr_jab a small bowel MRI will be able to show up the ileum. You have to drink litre of contrast fluid and lay on the scan table in the superman position for about an hour. The bowel prep you took for the colonoscopy is far worse!

Stm252 profile image
Stm252

Apparently IBS has a big crossover with us. Additionally mast cell issues run rampant and cause IBS related and motility disorders. If they don't find anything in the ilieum you may want to start thinking about these options.

SCMW profile image
SCMW

Hi, I posted a couple of queries on gastro and got some great replies. I will post them for you:

healthunlocked.com/behcetsu...

SCMW profile image
SCMW in reply toSCMW

healthunlocked.com/behcetsu...

SCMW profile image
SCMW in reply toSCMW

healthunlocked.com/behcetsu...

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