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Silent Crohns

Catherine

Moderator
I haven't post much in recent years.

A little bit of background my oldest daughter was dx with Crohn's aged 16, she went undx for a number years due to lack of bowel symptoms. She spend the last few years working around Australia and travelling world.

She did her colonoscopy prep yesterday which cause severe stomach and vomiting. The colonoscopy shows lots of large polyps.and almost blocked the large bowel. Colonoscopy stopped was due lack of access and no samples were taken. Only the few centimtres of bowel were viewed

Edit to additional information.
The bowel viewed appear to be perfectly healthy except for the polyps.😊
A ct is schedule for tomorrow.

Not happy to be on Crohns train.
 
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Catherine

Moderator
She is on azathioprine 200mg. Last scope was approx 6 years ago. S is now 24 and I have no say in her medical care.

All blood tests and fecal cal test look good. The bowel itself looks clear accept for large polyps which will need surgery to remove.

According to the GI the polyps are due to Crohn but are not due to active Crohn's Disease but previous inflammation.

Tomorrow procedure is a CT colonography.

Appointment with GI next week to discuss surgery and test results.
 

Tesscorm

Moderator
Staff member
I'm sorry that she's having this problem, especially as she seems to be in solid remission with no apparent inflammation! :mad:

Would this be a difficult surgery and recovery?

I hope today's CT goes smoothly and that next week's apptmt doesn't bring any unwanted surprises!

Hugs...
 
Oh man Catherine! I am so sorry to hear about the polyps. I hope they are just inflammatory polyps and not something more sinister. How bizarre though to be seeing them without any other signs of Crohn's.

I hope Sarah makes it through the procedure comfortably and that you guys get a solid plan going forward. Keep us posted! 😘
 

Maya142

Moderator
Staff member
My daughter had pseudopolyps in her TI when she was diagnosed. They were actually not found by scope - they were further up, I guess, but they were seen on a CT scan or MRE (can't remember which). We were told they were not true polyps but were caused by inflammation. Thankfully, with Remicade and MTX, her next scan (about a year later) was normal! We were told pseudopolyps can heal though - it sounds like your daughter has true polyps and not just pseudopolyps though.

INFLAMMATORY PSEUDOPOLYP
Inflammatory pseudopolyps represent areas of inflamed and regenerating mucosa that project above the level of the surrounding mucosa, which is frequently ulcerated. Th ey generally develop as a response to either localized or diffuse inflammatory diseases, such as Crohn's disease or ulcerative colitis, but they also occur in association with other disorders such as ischemic colitis,2 neonatal necrotizing enterocolitis,3 and infectious colitis,4 and they commonly form at the edges of intestinal ulcers and mucosal anastomoses. The pathogenesis is related to full-thickness ulceration of the mucosa, followed by inflammation and regenerative hyperplasia of the intervening nonulcerated epithelium. In rare cases, the patient may have no apparent underlying inflammatory disorder.

Pathologic Features
Grossly, inflammatory pseudopolyps may be sessile or pedunculated. They are almost always smaller than 2 cm, but so-called giant inflammatory polyps may reach large sizes and cause obstruction.5, 6 Filiform polyposis refers to the presence of numerous dense, filamentous polyps that can project several centimeters above the surrounding mucosa (Fig. 19-1).7 This form of polyposis is usually associated with IBD or, rarely, juvenile polyposis.
I hope they can get her feeling better soon Catherine. I can't believe her last scope was 6 years ago! Has she had any other imaging in that time?

Poor kiddo - two days of no food and I can't imagine a CT colonography is exactly comfortable.
 

Catherine

Moderator
I hope today's CT goes smoothly and that next week's apptmt doesn't bring any unwanted surprises
CT colonography was very unpleasant, but went well. Now the awaiting for answers

I hope they are just inflammatory polyps and not something more sinister.
GI believes they inflammatory polyps from previous flare. They are normal healthy bowel colour, just very big. Size wasn't mentioned but if the large bowel diameter is 3inch these polyps would have been 2inch in size and there is more than one.

We were told they were not true polyps but were caused by inflammation. Thankfully, with Remicade and MTX, her next scan (about a year later) was normal! We were told pseudopolyps can heal though - it sounds like your daughter has true polyps and not just pseudopolyps though.
They are pseudopolyps until I told otherwise but they are blocking access to the rest of bowel.

I will explain the 6 years once I'm home as it should be lesson to all your children who young adults you just have made time for your GI!!!
 

Catherine

Moderator
S has not had regular GI care since leaving high school. She last colonoscopy was whilst doing year 12. She completed one year university and then decide to travel.

At the age 19 decided she to travel to UK on the working holiday visa. I arrange a visit to GI before she left. Arranged medications, GI letter descripting medical condition and final blood test in Australia.

She had blood tests whilst in England under their system. She never got a refer to GI as she was well and was advised the awaiting time to see a GI was longer that the time remaining on her visa.

Once her two years visa was up she returned iAustralia via 4 months in Europe.

She was flaring and her GI started her on steroids. She was low on funds and unhappy living back at home and unable to find work locately.

She apply for a job in far north South Australia. And she for 4 days to get to Brisbane in Queensland. From where she would catch a small plane to a town in remote Queensland where her employer would pick up on supply run and drive the 4 hours journey to the job.

Again we raced around get enough medication organised for the 6 month contract. The town where she was working had population of 11. RFDS service made monthly half day visits.

After returned home for couple weeks she obtained job in Tasmania was just before Christmas 2017.

In May 2018 she was home for a couple in weeks before heading to Asia on 4 month holiday.

December 2018, she home again and saw her GI. There was talk of colonscopy and fact she needed one before she went overseas. She no longer had any private health insurance. And they started making arrangements.

2nd January 2019 started a job in Western Australia near Perth. We talk about getting a local GI to do a colonoscopy. It didn't happen.

In May she was home for less than week before flying to Adelaide. Where she a friend drove to Broome WA over a three week period to start new jobs in Broome WA.

In October 2019, she she and her boyfriend drove back to Melbourne via Perth, and Adelaide and arriving on 2nd January 2020.

Whilst she was on road we had discussion about her seing her GI whilst she was home. And she couldn't get an appointment in her timeframe, she planned to leave before the 13 January. I suggested she book at colonoscopy privately. There was a slight problem of no referral for the colonoscopy. I crossed my fingers and advised she any gp would give her a referral with her medical history.

Appointment was made for the 15th January. Departure delay.. She was ticking the boxes for she next trip overseas in May . Started applying for jobs giving a possible starting date of the 17 January.

Her plans are now a hold.. The results were a surprise to everyone.
 
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