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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
 

Maya142

Moderator
Staff member
My kiddo had an awful time with Imuran - first it wasn't at therapeutic levels so it wasn't doing anything and then we added Allopurinol and that got her to therapeutic levels, but then she got infection after infection. She's not a kid who normally gets sick (one cold a year is her norm) but that year she was on Imuran and Allopurinol, she had 6-7 infections requiring antibiotics. We finally stopped it when she got C.Diff from antibiotics for a throat infection.

She has been on biologics and MTX or other immunomodulators for years - in fact, she's on two biologics + MTX now and has been perfectly fine on them, even while in college. She's honestly been fine on every drug except Imuran!

So a biologic really might be the best thing for your daughter - it might finally put her into remission!! I would hope that they'd put her on Remicade, so they can get the inflammation under control ASAP.

Fingers crossed that they come up with a good surgery and medication plan.
 

Catherine

Moderator
but yikes now so much of the small bowel is involved also?
Hugs and prayers for you both.
There is enough small bowel involved to make short bowel symdrome really possibility.
Due to amount to bowel involved and number of resections required.

There are number of loops of small bowel involved with clear sections between. The affected sections of bowel are all touching. The polyps are on the inner of the sigmoid colon where it rest against the small bowel. The polyps are possible due to the body wall off infection/abscess in the small bowel.

The surgeon is going to check whether it same area of small bowel where there was conjecture on whether there was fistula invisible on MRI 7 years ago.
 

Tesscorm

Moderator
Staff member
I'm so sorry to hear all this. So hard for you and Sarah. She must be very disappointed and worried about how this will affect her near term plans. :(

Sending lots of wishes for a speedy treatment and recovery!!

Something to keep in mind, as she likes to travel, humira might be a better bet for her as it might be more portable. It might not be easy or possible to arrange infusions in remote locations.
 

my little penguin

Moderator
Staff member
Second humira
Each shot can be stored at room temp up to 14 days prior to use (once )
Recommended to be refrigerated
But travels well
 

Maya142

Moderator
Staff member
I'm so, so sorry to hear this. I know the system in Australia makes it hard to qualify for biologics and poor Sarah is suffering because of it. It sounds like she should have been put on a biologic years ago.

If she has fistulae, my guess is that Remicade will be recommended, but Humira is certainly easier to travel with! I hope she will be postponing her move and travel till all this is resolved. Poor kiddo. Sounds like it will be a complex surgery, which breaks my heart. I'm so, so sorry for you Catherine.
 

Catherine

Moderator
She had been told surgery is her best option.

The surgery will be in April/May using the public system. As a high prior case.

We will know more after meeting with surgeon on Wednesday.
 

Catherine

Moderator
Saw the surgeon today. The surgery will involved 3 maybe 4 loops of small bowel as well as the section of large bowel. There are two fistulas. One from large bowel to small bowel. It will take approximately 4 and half hours. All going well he hope to do 4 sections. There is a 20 cm section of small bowel which he hopes save between the resections.

Level 2+ surgery, 6-8 weeks awaiting period. 5 days in hospital, 3 weeks of work. Referred back to GI after surgery for maintenance medication.
 
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Maya142

Moderator
Staff member
Poor kiddo. I hope very much they will put her on biologics after the surgery!! Are they expecting her to need an ostomy? How is she coping with all this? I'm sure it must be a huge shock after many years of no symptoms or few symptoms.
 

Catherine

Moderator
Hi everyone,

Sarah is still in South Australia with her partner. SA have closed their borders. If they leave SA, they won't be able to return the without doing 14 days isolation. They both still have jobs.

Her surgery is schedule for 1 June. All level 2 and below elective surgery has been cancelled for all public and private hospitals. She is level 2+.

Her pain is worsening. Her GI Surgeon has advised if pain gets too much make she way to hospital emergency, his preference is hospital where the surgery is schedule in Melbourne. 5hrs by car from where she is living. Her chances of catching the virus are much less in SA
 

Catherine

Moderator
Sarah heading back home on Sunday. The surgery is now scheduled for 20 April. They no longer doing pre-admiission appointments. Unsure whether visitors are allowed.

We are at stage 3 restrictions in Victoria. There are 4 reasons that allow to leave home.

-medical treatment
- getting food or provisions
- work or study which can't be done on line
- exercise

I am still going into the office but we are shut to tthe public My husband is home due to being high risk. My other two daughter are both studying online.
 
Glad her surgery has been moved up to April, and I do hope they allow for visitors. I know here, it was only one visitor at a time (but I don't know if that has changed). It's the same here in Canada re: COVID-19 restrictions. Thank God the weather is looking good for the next few days as at least it is nice to get out for a walk.
 

crohnsinct

Well-known member
I am so glad she is coming home! I am so sorry you are having to face this surgery during a pandemic....as id it wasn't concerning enough.

We have been sheltered in place since March 13th and restrictions are scheduled to go through at least May 3rd. All of our hospitals have a no visitor restriction no matter what you have been admitted for. Only the children's hospital by us allows one adult with each child and you can't leave once you go in.
 

Catherine

Moderator
Sarah's surgery is Monday, in a small private hospital. She receive information about a stoma in the mail. She very upset about the possibility of a stoma. She is now in pain everyday and is invisibly thinner.

We are still at level 3 restrictions. The hospital is not allowing visitors as per government directions.

Sarah's and boyfriend are still planning to travel overseas once restrictions on travel are lifted. Our government is saying our borders are likely to be closed until 2021
 
I'm so sorry to hear that Sarah is in pain. Fingers crossed that surgery goes smoothly. So unfortunate that she can't have visitors. This would be difficult as a parent to not be able to visit. Good thoughts for a successful surgery. Pain pain go away, never come back another day!
 

crohnsinct

Well-known member
AW Catherine! I am so so sorry that you can't stay with her. Even thought they are "adults" they are still always our children.

Sorry she is in so much pain and hoping that after the surgery she could be on her merry way.

Will the stoma be temporary? Might they reconnect her after a year or so? There are lots of resources (groups) I can send to you if you would like. There is a group of young girl ostomates. That ostomate model from Aerie is in it. They are pretty helpful to one another for tips and tricks for taking care of a stoma, skin care, bags etc.
 

emmaaaargh

Moderator
Staff member
Hi Catherine - I'm not a parent, but I've been following Sarah's story closely. I've been through something similar really recently, so I just thought I'd chime in in case my experiences could be useful. I had urgent surgery in November to do a strictureplasty and resection of some sections of small bowel, with a temporary stoma while the surgery site healed. Unfortunately, more was damaged than we saw on the MRI, and I now have short bowel syndrome as a result of the surgery and a temporary jejunostomy (reversal was supposed to be happening soon, but I don't see it happening until next year at least now!). If Sarah or yourself have any questions or anything about such a big surgery or the possibility of an ostomy I'm more than happy to chat. I'll be thinking of her all the way, and I hope the surgery goes well!!
 

Catherine

Moderator
As far as we know they still planning to do four resections all going well. If things don't go well 3 sections maybe stoma. At moment she is saying she want stoma and won't agree to it. There are least two fistula.

She not interested talking to anyone.

The MRI looked like there wasn't active Crohn's.

In normal times she would have a had a visit to the hospital to prepare for the possible outcomes and see a stoma nurse. The letter in the mail was reminder of how bad this.

The increasing level PAIN makes her think the Crohn is active.

The prep has increased her pain considerably.

Sarah is now 24.
 

Catherine

Moderator
Hi Catherine - I'm not a parent, but I've been following Sarah's story closely. I've been through something similar really recently, so I just thought I'd chime in in case my experiences could be useful. I had urgent surgery in November to do a strictureplasty and resection of some sections of small bowel, with a temporary stoma while the surgery site healed. Unfortunately, more was damaged than we saw on the MRI, and I now have short bowel syndrome as a result of the surgery and a temporary jejunostomy (reversal was supposed to be happening soon, but I don't see it happening until next year at least now!). If Sarah or yourself have any questions or anything about such a big surgery or the possibility of an ostomy I'm more than happy to chat. I'll be thinking of her all the way, and I hope the surgery goes well!!
This still a planned surgery. Want the recovery time like? When the surgery was initially discussed the surgeon feel she would need three week off work? She is not working anymore but would have through it would be longer.

I know they planned to release her from hospital on Saturday.
 

Catherine

Moderator
I'm so sorry to hear that Sarah is in pain. Fingers crossed that surgery goes smoothly. So unfortunate that she can't have visitors. This would be difficult as a parent to not be able to visit. Good thoughts for a successful surgery. Pain pain go away, never come back another day!
They are alway your child know much how old they. She wanted her partner there more than me.
 

Catherine

Moderator
Will the stoma be temporary? Might they reconnect her after a year or so? There are lots of resources (groups) I can send to you if you would like. There is a group of young girl ostomates. That ostomate model from Aerie is in it. They are pretty helpful to one another for tips and tricks for taking care of a stoma, skin care, bags etc.
We are no sure there will even be one. We will know late Monday our time. Her sister boyfriend father has contacts with all the supports groups. Both father and son have IBD as well.

R's boyfriend has been told he better monitor his disease very carefully so am not go through this again.
 

crohnsinct

Well-known member
WAIT! She had the surgery or the surgeon just found the abscess? Is the abscess where one of the fistula are or us this yet another problem spot. This poor girl. We are praying for you guys!
 

Catherine

Moderator
WAIT! She had the surgery or the surgeon just found the abscess? Is the abscess where one of the fistula are or us this yet another problem spot. This poor girl. We are praying for you guys!
She had surgery this morning our time.

They removed 50 cm on bowel in all. I am not sure of the breakdown between large and small bowel.
The surgeon said they is plenty of small bowel left.
2 resection were done.
It sound like the fistula between large and small bowel is gone.
Bowel in very inflamed.
The surgery was key hole.
There was a abscess - where I am not sure but think in the same area.
No bag and this stage will need to see how healing going.

This is the information of got from the surgeon in a 2 minute phone call a work.

Last night she was vomiting and in severe pain. We called the hospital where she was booked for surgery and they told us to take her to ER of our regional hospital, as vomiting is not a normal side effect of bowel prep. COVID-19 has sure made the ER quicker, they took our temps on the way in. All staff were in masks. She was in bed within 10 minutes of arrived, they administrated morphine and did blood work. Her pain settled, and once they were sure she wasn't in shock, they allowed her to go and make she only way she planned surgery. They didn't like her blood pressure. We got home at 4.00am.

Her boyfriend drove to hospital for a 6.30 arrival, they left home at 5.50 am. Surgery must have started pretty much straight way as got a phone call from the surgeon at 12.28 pm
 

crohnsinct

Well-known member
Wow! What dramatic events given that the surgery was planned. Sounds like she had a skilled surgeon. I am so glad that he was able to avoid the stony for her...for now anyway....and she still has a good amount of small bowel left!

It breaks my heart that you can't go be with her and don't have access to the doctors. I am so, so sorry.

How long did they tell her to plan to be inpatient?

Now we pray for proper and speedy healing!
 

Catherine

Moderator
Sarah is fine, she was doing video call to us the day of surgery. She pain is well controlled.

She was surprised by the number of tubes attached to her. Five in all.

The nurses tried to get her walking today, they had standing for 30 seconds before putting her back down. This was the worse pain she has ever felt, along with nausea and light head.

Has seen the surgeon and the physio. End up sitting in a chair for an hour. Did enjoy it but she did it.
 
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Catherine

Moderator
Wow! What dramatic events given that the surgery was planned. Sounds like she had a skilled surgeon. I am so glad that he was able to avoid the stony for her...for now anyway....and she still has a good amount of small bowel left!

It breaks my heart that you can't go be with her and don't have access to the doctors. I am so, so sorry.

How long did they tell her to plan to be inpatient?

Now we pray for proper and speedy healing!
Yes she was lucky it was still planned.

Technology is good. Video call, texting and hone call with Sarah.

5 days as inpatient. Today is day 1.

Thank you.
 

Tesscorm

Moderator
Staff member
Poor thing! Now that the surgery is done, I hope all settles for her! That her recovery is quick and uneventful (or, at least, all is as will be expected!)!

It must be so hard for you to not be with her but, yes, thank god for today's technology!

You're both in my thoughts and sending best of wishes!! 🌹
 

Catherine

Moderator
Day 2 wasn't a good day. She had a shower but had problems, nausea and the glitters. They thought was too pain relief and try to reduce it but it left her in severe pain.

She feels she gone backwards and upset with all the tubes. They did start her on clear fluids.
 

crohnsinct

Well-known member
I am so glad she is doing better!

What are the injections? You can do it! You are super mom! I have faith in you!

planning to take the drain out and talking discharge Are all good signs but don’t be surprised if discharge doesn’t happen on Sunday. Discharge dates change all the time.
 

Catherine

Moderator
The injection are a daily shoot to reduce clotting, once a good day for 30 days.

The drain come out yesterday.

Sunday, tomorrow is the new discharge date
 

Maya142

Moderator
Staff member
Did she get home safely? She is an amazing kid - dealt with a major surgery all by herself!! She's a real trooper. My kiddo was hospitalized during this COVID craziness and even that was hard - it's hard advocating for yourself when you're in pain! I'm glad they were able to get the pain under control relatively quickly and I'm glad it was laparoscopic - my kiddo had a much easier time recovering from a laparoscopic abdominal surgery vs. an open abdominal surgery (and neither of hers were major surgeries).

So glad she did not end up with a bag. Really scary that she got into such bad shape with no symptoms. Wow. A fistula and abscess and massive inflammation in her small bowel - and no real symptoms!! I hope they will monitor her very carefully in the future. Glad her boyfriend will make sure she takes care of herself now ;).
 

Tesscorm

Moderator
Staff member
I'm so glad she's recovering so well!! And I do hope she was discharged yesterday!

Lots of wishes the positive recovery continues!! (y)(y)
 

crohnsinct

Well-known member
Wow! What a superstar! I am of course talking about Sarah AND you! Great job letting her go and live her independent life. I admire your ability to give up complete control;)
 

Catherine

Moderator
Crohnsinct I have no control.

Surgeon visit went well. Recovery had been really good. Surgeon says the she has had a really good result, she was very close to needing emergency surgery.

Biopsy show clear Crohn's and also clear margins. Also appendicitis but believe that from Crohn's.

She is having some issues which he doesn't believe are from short bowel but from bile salts. Burning and liquid movements.

50 cm small removed plus small section of large bowel.
 

Catherine

Moderator
Update.

Sarah is starting a new job on 22nd.

She has made a full recovery. She is in no pain all. She is full clinical remission.

Back on Imuran 50 mg daily. She is also taking phyllium husk daily and will need to take it for life.

Calprotectin level has come back at 8.

The plan is to do a calprotection level every 3 months.

They remove the Illeum and end of ascending colon and a sigmoid colon. The fistula when from the lleum to the sigmoid colon.

I
 

crohnsinct

Well-known member
8?! 8?! 8?! That is the stuff of legends! I am so, so happy for you guys! Way to go Sarah! She totally rocked this! Literally have tears in my eyes. How on earth she defied all she was facing and then started a new job on top of it?! She is a rock star and an inspiration to all our kids! Thanks so much for the happy news. I needed that tonight!
 

Maya142

Moderator
Staff member
Sarah is starting a new job on 22nd.

She has made a full recovery. She is in no pain all. She is full clinical remission.

Back on Imuran 50 mg daily. She is also taking phyllium husk daily and will need to take it for life.

Calprotectin level has come back at 8.
That's amazing - I'm SO glad!! Way to go Sarah!!!

Just out of curiosity, are they planning to put her on something besides the Imuran? Considering the Imuran wasn't controlling her disease before the surgery? Was Remicade ever discussed?
 

Catherine

Moderator
She has been off all medications for 18 months. She decided to stop Imuran in January 2019. So the theory is imuran was working. The monitoring is the key. If the calprotectin level go up they will more fast.

Biologics? Have been discussed. She doesnot like taking medications at all and because of this I actually asked the benefit of treating inactive Crohn's. There are good studies that Imuran is good at keeping you in remission after surgery. Her disease has not changed location since dx

At this stage the most important part of her management plan is 3 monthly calprotectin.

I have no say in her treatment or mangement. Sarah is 24 years old and it is 8 years since dx.
 

Maya142

Moderator
Staff member
Biologics? Have been discussed. She doesnot like taking medications at all and because of this I actually asked the benefit of treating inactive Crohn's. There are good studies that Imuran is good at keeping you in remission after surgery. Her disease has not changed location since dx

At this stage the most important part of her management plan is 3 monthly calprotectin.

I have no say in her treatment or mangement. Sarah is 24 years old and it is 8 years since dx.
That makes sense - if her FCP goes up, they can get her on Remicade quickly. So do they think all this inflammation occurred in the 1 year she was off Imuran? Because I guess that's what I wonder - was it that Imuran hasn't been controlling the disease for the past 4-5 years and that led to so much her small bowel being removed and diseased, or did it really happen in one year?

I guess time will tell. As CIC says, legal adults :rolleyes: . Mine is 23 but thankfully is currently still willing to hear to advice, though she is pretty stubborn and doesn't always follow it!
 

Tesscorm

Moderator
Staff member
Amazing news! I'm so happy she's recovered and is able to get right back into her life! Really great!! :D(y)
 
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