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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...
 

crohnsinct

Well-known member
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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crohnsinct

Well-known member
....and I thought getting O good GI care was a challenge. I think you just won the prize that no one wants!

I absolutely love Sarah's spirit. God Bless that kid. She is going to squeeze every ounce out of life that she can. I wish I had a tenth of that spirit.

Glad she has decided to put a hold things....well, maybe she hasn't actually decided. Poor kid.
 

Maya142

Moderator
Staff member
S is one tough kid!!! I'm glad she has gotten to live a normal and full young adult life, but I'm sorry that her Crohn's progressed so much. I agree - young adulthood is WAY harder than having teenagers. For all the reasons you mention -
1) they're not minors, so Mom can't really do much unless the child agrees
2) While they are not minors, they make poor decisions (brains aren't fully developed till 25-26!) and have poor judgment
3) Young adulthood is different from other stages of life - there are a lot of transitions and possibly (depending on the kiddo) a lot of travel. They may be in college or working but there is much more uncertainty as they try to figure out their path and they're just learning how to navigate life on their own

I will say that I am SO glad my daughters chose to stay close to home for college and have been pretty diligent about their medical care (well, except for a certain stubborn kid who lost 30 lbs and became severely malnourished before she agreed to a feeding tube). But they have both had their moments where they have put school or work first and skipped appointments.

I have found talking through it (if they will agree!!) sometimes helps - going through their options and possible consequences (i.e. what could happen if I choose to prioritize going to school when I am really unwell). But it can be hard to get them to really talk. Seeing a psychologist has been a HUGE help for my younger one, whose life is controlled because of the severity and number of illnesses she has.

I'm also lucky that my younger daughter gave me permission to talk to insurance and specialists due to the sheer number of specialists she has and the number of meds she's on (around 18 meds now) - because she doesn't want to deal with insurance (and in truth, there is no way she could manage all that and school and being so sick) and needs a ride to see her specialists, so I know what is going on and can bring up concerns (though more than once she has banned me from talking during an appt., much to her doctors' amusement!!!)

I hope very much they can get Sarah feeling better, so she can go back to her life (but hopefully including regular GI visits wherever she is!). I hope they will consider Remicade or a biologic - it really sounds like she needs one.
 

Catherine

Moderator
GI appointment.

There is 10cm of large bowel which the GI believes need to be removed. Too big for balloon procedure??

No sign of crohn's disease, listed as of unknown cause on the CT.

Next step meeting with surgeon on 4th Feb.

Sarah doesn't feel sick, she has no symptoms but there a is partial bowel obstruction as after bowel preparation and two days of no food there is still so matter in the bowel.
 

crohnsinct

Well-known member
Oh man Catherine! So Sorry to hear this. Are all the polyps in that same area or will she need additional polyps removed? You don't hear about resection of the colon very frequently here in the Parents section. This just makes me sad.
 

Maya142

Moderator
Staff member
They think she has polyps that are unrelated to IBD? That seems like an awfully big coincidence to me...

Hope the surgery goes well. Will she end up with an ostomy? Poor kiddo.
 

Tesscorm

Moderator
Staff member
I'm really sorry to hear that it seems surgery is needed. I hope the surgeon can offer a positive outcome re speedy recovery! lots of hugs!
 

crohnsinct

Well-known member
Hi Catherine. Checking in on you and Sarah. Curious, have they ruled out polyposis syndrome? This could explain polyps without active Crohn's. Might change how they approach things and also would alert them to look elsewhere and guide them to more frequent surveillance.
 
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Catherine

Moderator
Hi everyone, the appointment with the surgeon is tomorrow. The polyps are in 10cm section of bowel all together. the CT colonography showed that the rest of the bowel was clear.

The GI called a partial bowel obtstruction as the even with a full bowel prep plus 24 hrs of no food accept jelly and clear soup and bowel was not clear.

She has a inflammatory polyp (single) removed six years old during colonscopy.

Not asking to many questions, as I don't want to get myself banned from the surgeon appointment.
 

my little penguin

Moderator
Staff member
Oh no!
Hugs to you and her
Hope the surgery appointment goes well (and she lets you or another adult be with during the appointment)
 

Catherine

Moderator
I liked the surgeon. The surgeon whats to make sure there is no inflammation around the problem area or in the small bowel. He has requested a MRI.

The problem area is sigmoid colon. Wants to make sure it structure. Major surgery. If anything go wrong with the surgery it could result in further surgery and possibility of bag.

If there is inflammation elsewhere will refer back to the GI to look at medical options.
 

Catherine

Moderator
They think she has polyps that are unrelated to IBD? That seems like an awfully big coincidence to me...
They are IBD related but there doesn't any signs current of IBD. The GI thinks they started as imflammatory polyps but they have healed/or scarring

I'm really sorry to hear that it seems surgery is needed. I hope the surgeon can offer a positive outcome re speedy recovery! lots of hugs!
Surgeon wants more testing. Thanks
 

crohnsinct

Well-known member
Glad you like the surgeon, that is huge! Super glad he is being careful. Do you have the ability there to get second opinions? AS a general rule, whenever we discuss surgery of any kind, I like to get at least two opinions but I now your healthcare system is set up differently.

How is Sarah doing?
 

Catherine

Moderator
How is Sarah doing?
As she is not actually feeling sick. Just gas pains off and on. Still no bowel symptoms although she told Surgeon maybe toilet 3 x daily. She is stilling planning to go overseas in May:confused:.

She is trying to get the MRI done early next week, so get some work in South Australia and come back for the appointment at the end of February.

Do you have the ability there to get second opinions?
Yes, we can get second opinions but as she will be using Medicare as she has no private insurance. Medicare will not give her choice of surgeon. She has seen the specialist privately.
 

crohnsinct

Well-known member
She is something else! I remember she was always quite tough and driven. Glad she is being so positive. I will be praying that her plans for travel in May happen.
 

Catherine

Moderator
The MRI went well. S to moved South Australia to be with her boyfriend two weeks ago. 5 hours away by car.

We saw the surgeon today. The news isn't good. There are multiple areas of inflammed/damaged small bowel. There are large areas of unaffected bowel between inflamed areas. Likely caused by an abscess? Due to body walking off.

It will a complex surgery. The surgeon has arranged for case to be discussed at meeting next Wednesday.

Surgeon is thinking a medical approach with surgery will be needed.
 

crohnsinct

Well-known member
OMGosh! Nothing stops that girl does it? Complex surgery? That's nice but I gotta go. She is something else.

I think we all had a feeling that this was going to be a very involved surgery. I am glad they did the MRI but yikes now so much of the small bowel is involved also? I am glad the surgeon is being vey thorough and getting other opinions.

Hugs and prayers for you both.
 

Maya142

Moderator
Staff member
Wow, poor kiddo. It sounds like she probably needs to put her health first for a little while - I know that is the absolute LAST thing young adults want to do, but if her small bowel looks so bad, she needs to be on a biologic probably. She's been on Imuran for years, right? And it clearly hasn't been controlling the inflammation. Since she has failed Imuran, do you think she would qualify for a biologic now?
 

Catherine

Moderator
My head in a spin. I did not expect this.

She has been of Imuran since January 2019. She was Imuran since dx, so yes 7 years. Accordingly to her, she has been much healthy since commng of it.

Biologic have been mentioned by the surgeon. He keeps asking whether ever been on them.

I think they (team) will trying to work with whether the plan is:

Surgery then medical treatment

Or medical treatment then surgery.

She still has very few symptoms
4bm per day, some pain no weight loss
 
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