MRE, Strictures, Possible Surgery before Remicade

[ValerieB]

Hello all,

My son, Aden (16 yrs) was recently diagnosed with Crohns within the last few weeks. His GI wants him to start Remicade infusions but is doing a MRE (Magnetic resonance enterography) to make sure there are no strictures in the bowel. If there are, she will want to do surgery first to correct them before starting the infusions. Has anyone experienced this? Are the surgeries laparoscopic? How long is the hospital stay? And, how long until the infusions start post surgery?

Aden has been having a hard time staying the whole day at school. He has severe lower back pain and continues trips to the bathroom. My guess that his 10th grade year will be a wash and will have to make it up.

Thanks in advance for any advice!

Valerie

Mom to son Aden (16 yrs) diagnosed with Crohns 4 weeks ago.
New to all of this!

 

[my little penguin]

Breathe
Most kids get an MRE at dx
It's pretty standard

If they were really concerned about a stricture
Your kiddo would be admitted and pulled from all solids /liquids except clears with an MRE the next day
Btdt

That said they won't know what damage is or isn't present until they have the MRE
And even if there is damage there are lots of factors prior to surgery
Since thickening can look like structure but may be just inflammation
Most docs treat to reduce inflammation first then rescan to "see" if it's a stricture


Surgery would depend on where
How long the stricture is etc...,
So
Please breathe
Do the MRE
And assume some thickening will be seen
But not too much

Ds has had thickening of the Terminal ileum for 7 years
No surgery needed

 

[Maya142]

I can't remember if I have suggested this (I probably have) but I think he should see a rheumatologist. Lower back pain can be a sign of spondyloarthritis, which is associated with Crohn's (also called enteropathic arthritis or enthesitis related arthritis). It is common in teenage boys.

Signs of inflammatory arthritis would be pain that gets better with movement and morning stiffness.

My daughter has not had a surgery to remove a stricture. But she did have a surgery to place a J tube last year. It was a partially laparoscopic and partially open abdominal surgery - what I mean is, they made laparoscopic incisions to see if her bowel to ok to have a tube place (if they found too much Crohn's in her jejunum, they would not have placed it) and then a 2.5 inch incision through her belly button.

The first two days were hard. She was on a pain pump for post-op pain, but for the first day she was in a LOT of pain until the increased her dose of Morphine.

After that she was better. She spent a lot of time watching TV to distract herself.

She was up and walking the first night. Her major issue was not being able to pee - sometimes the bladder "goes to sleep" with the anesthesia and takes time to wake up. They did not put in a catheter while she was under (no idea why) and so they had to cath her twice when she was awake. After the second time, I said if they needed to do it again, they needed to leave the catheter in.

We were not warned about a catheter and in retrospect, I wish I had asked them to put it in while she was asleep. The catheter was the part that she hated most.

My kiddo had two bad days, the third day was better and the fourth day (really the night) she went home!

We did not stop her biologic or immunomodulator before surgery. Her incision healed well, despite the immunosuppressants. The surgeon was actually more worried that she was on steroids (Entocort) but it was an urgent surgery because she was losing weight.

After two and a half weeks, she went back to school (college, so she was away from home).

The things she found most painful were sitting up, getting up from lying down, going to the bathroom, laughing, coughing (anything that used her abdominal muscles).

She spent about 8 days on oral pain meds and then switched to Tylenol.

I will tag Clash and Kimmidwife since their kids have had surgeries too.

Try not to worry too much till he has had the MRE. Sending hugs!!

 

[Maya142]

I wanted to add - my daughter had a stricture found on a scope - she was also admitted within a week or so of finding it. She was immediately put on clear fluids and nothing else.

If they were REALLY worried about a stricture, you would know.

She also has thickening in her terminal ileum, but has not needed surgery for that yet.

 

[Mehita]

My son had a stricture that had to be surgically removed, BUT... we had his GI, his surgeon, and a radiologist all looking at two MRE's over the course of two years to determine if it was really necessary to remove the stricture. Surgery is a big deal. The tricky part is determining whether it's from inflammation or from scar tissue. If it's inflammation, it can be treated with meds first. If it's scar tissue, then it will most likely need surgery. In my son's case, all three doctors agreed that it was scar tissue, so surgery was needed. I stress the three doctors because each has their expertise and surgery shouldn't be taken lightly.

That being said, to answer your other questions, they intended to go in laprascopically and did, but then had to switch. He has a three inch scar through his "new" belly button. He had 10" of small intestine removed and was in the hospital for 6 days. Full recovery took 6 weeks.

In my son's case, he continued Pentasa after surgery, but flared again two months after surgery because, well, basically Penasa doesn't do squat for Crohn's and I wasn't educated enough to know better. He was then put on Aza and it wasn't strong enough for him. He switched to Remicade six months after that flare.

Does your son have a 504 plan? If not, he should. It will help a lot with getting accommodations at school. Ours includes tutoring if out for more than 14 days. Things like that. Search CCFA's site for their 504 information.

I hope he feels better soon!

 

[Tesscorm]

My son has also had a number of MREs - they are a part of standard testing for crohns. Having the test scheduled, in itself, does not mean there are complications. But, it will show them if there is. It will also be used as a baseline to determine how well treatment is working. My son also had inflammation and some thickening but didn't require surgery.

As for the back pain, my son also had back pain for months prior to diagnosis. He did have lower back pain but, at times, also in the upper back. As this began prior to dx (or any crohns symptoms), we assumed it was related to hockey injuries, slouching, a growth spurt, etc. and his ped suggested he take advils before/after games and practices. In hindsight, I don't know why I thought it was okay for a 16 year old to be taking so many advils for so long. (And, I often wonder if this is what triggered his first crohns flare.)

But, once diagnosed with crohns, his GI had him seen by a rheumatologist and all was clear. I was told it might have been referred pain due to the intestinal inflammation (or completely unrelated :ybatty. Once his crohns was under control, his back pain disappeared as well. I completely agree with Maya in that the back pain should be looked at but it may also clear up once his crohns is under control. In the meantime, my son found that Tiger Balm ointment helped lessen the back pain.

One note though, as your son has been diagnosed with crohns, he should not take any NSAIDs (advils, ibuprofens, etc.) which can cause intestinal ulcers, etc. Tylenol is okay. I'd also be careful with anti-inflammatory gels (as they are also a form of nsaids) - while my son's GI has allowed use of these for injuries, we were told to use them sparingly.