Stricture - duodenum

[Maya142]

We got some bad news today. M went in for a tube change today. We did it endoscopically because her GJ tube has been flipping back into her stomach instead of staying in the small bowel. So the point was to secure it to the jejunum using a clip.

Well, in the third portion of the duodenum, they found a stricture. We're shocked because her Crohn's has always seemed so mild. The scope was unable to get past the stricture and so they couldn't get the tube into her jejunum.

She has had an MRE (2013), pillcam (2014) and SBFT (2015) - all were clear.

Does anyone know how we can differentiate between a stricture caused by scar tissue or one caused by inflammation?

The GI doing the procedure already suggested a balloon dilation. They think the stricture is causing most of her nausea, not her Gastroparesis.

Has anyone's kiddo had a stricture in the duodenum? They told us it was rare.

 

[SteffieB]

Hi! Strictures are quite common in Crohn's Disease. What symptoms is your daughter having? Are they manageable or not? What has she had for treatments so far?

 

[Maya142]

Just nausea most of the time. We knew she had disease in her terminal ileum and colon, but had no idea about duodenum (it was past where regular scopes see). Her FC has gone down after adjusting Imuran and adding Allopurinol.

She is on a biologic for her AS, but one that does not treat Crohn's. The complication is that the biologic working well for her AS but her Crohn's promptly flared after we put her on it. We were able to get it under control with Imuran (dose change), Entocort and Allopurinol.

She has been on Humira, Remicade and Simponi in the past and her Crohn's responded very well to them but her AS did not.

 

[SteffieB]

Just to clarify some of your abbreviations...AS? FC? (Flare of Crohn's? ??) I am from Canada, so maybe we don't use the same abbreviations? I will do my best to help, but I am only a fellow Crohn's patient, so I can only respond to what I've experienced. I have had a stricture, but they didn't do anything about it, because it wasn't causing problems. Anyway, if you can clarify your abbreviations, I will do my best to respond.

 

[my little penguin]

AS is ankylosing spondylitis and FC would be fecal caloprotectin

So sorry to hear this no experience with strictures duodenum or otherwise
Ds normally has inflammation found in his duodenum during scopes but last scopes was clean except gastritis

 

[Julia S]

Hi! I think your GI should be able to tell whether the stricture is scar tissue or inflammation. I say that because I have a stricture in my mid ileum that was seen on capsule endoscopy and both the endoscopist who wrote the report and my GI said the stricture was fibrotic (scar tissue). What they told me is that when its caused by active inflammation you usually see irregular mucosa, ulcers or lesions on the site of the stricture. In that case, medication should be able to reverse the narrowing. If the mucosa looks reasonably healthy but there is narrowing, that would be fibrotic. In short, her doctors should be able to tell if its scar tissue or inflammation. If the stricture isn´t causing too many problems, they usually just leave it. At least that's the plan with mine for now. But, in your case, if they can dilate the stricture and improve her nausea I think that's great news for her! It must be tough to be nauseated on a daily basis. I hope she feels better soon and that this is an isolated occurrence for her. Sending both of you my best.

 

[Clash]

Oh I'm so sorry to her the news.

C's stricture at his ileocecal valve was determined to be chronic inflammation but there were areas of fibrotic tissue, as well. It really didn't matter whether it was inflammation or scar tissue for him since there was concern that due to the length of time the stricture had been present there was a possibility of perforation and since meds weren't cutting it.

The surgeon said it was like hamburger meat and he couldn't believe C was asymptomatic with the level of damage there. That's when I realized this disease has the capacity to be insidiously silent.

It sounds great that they may be able to dilate it and that it could alleviate her daily nausea. Please keep up updated.

 

[pdx]

So sorry to hear this, Maya, and I really hope the balloon dilation is all she'll need. Is her tube feeding on hold while they try to figure out the next step?

 

[Mehita]

Oh, Maya, sorry to hear this. DS had a structure in his jejunum. It took a really good radiologist (who'd been watching the structure for two years), his GI and a surgeon to all sit together and review his MRE's to decide that it was due to scar tissue. I believe it is very difficult to determine.

We knew DS had a structure from his first MRE and the plan was to try him on various meds to see if it went away on it's own. If it did, it was inflammation. In DS' case, it never went away so, after a year and two more MRE's they determined it was scar tissue and he had surgery.

DS was nauseaous all the time, 24/7. Food was backing up into his stomach and he was miserable, especially after eating.

I hope you get answers and a plan soon.

 

[Maya142]

Thank you all for your responses. We were so blindsided that I didn't even ask any good questions!

I think an MRE is the next step, since she hasn't had one in a while. There are also images from the scope and maybe her GI can look at those and tell us what she thinks.

M is nauseous a lot - with every meal and it seems to be getting worse. We kept guessing it was Gastroparesis but her Domperidone was not helping enough. Then we thought gastritis but Carafate did not help at all!

The tube is currently in her duodenum, so we can do feeds. It's just probably not going to hold for more than 3-4 weeks since they couldn't get it past the stricture into the jejunum. The GI who did the procedure suggested replacing it and doing a balloon dilation at the same time.

So as of now, she is at least getting feeds. The complication is that she is away at college (1-1.5 hours away) so we have to manage everything around that.

 

[Julia S]

I hope the images from the scope help your GI decide on what is the case. Like I said, in my case the images were enough for an answer (although my MRI was not).

I think the good news though is that something can be done about it in either case, inflammation or stricture! I hope she is doing well in college. Keep us posted!

By the way, I'm newly diagnosed and 30 years old and it's been tough for me. Right now it feels like life will never be the same again and I'm rather bummed and worried about everything. When I read stories here about all the super tough awesome kids who are dealing with a bunch of issues and still going to school, working, competing in sports, going to camp and whatnot it really helps put things in perspective though. If they can do it, a 30 year old should definitely not be whining ! Everyone here, and especially the mums and kids are so incredibly brave and I really wish I could tell all of the kids and their moms personally how inspirational and awesome they are.

I'm keeping my fingers crossed for you and your daughter and hope that things only improve from here onwards!

 

[pdx]

Hope you can get the MRE soon, and that it helps with the decision-making. And can I just say that your daughter is a rockstar for continuing at college while dealing with all this. (and you too--since I'm sure that you're the one figuring out how to get everything done that needs to happen!)

I wish that there was a biologic that worked well for both your daughter's AS and Crohn's...

 

[Maya142]

We wish that too pdx . Life would be a lot simpler if she could just be on Humira or Cimzia or Simponi.

We will figure it out. We have talked about adding Entyvio to her current biologic (so 2 biologics) but I'm not sure it works well for strictures.

 

[Tesscorm]

Ugh, sorry to read about the stricture!! I hope the balloon dilation works and that this also takes care of the nausea!! It would certainly be nice if something good came of it! :ghug:

 

[pdx]

Just saw your update on Kim's thread--sorry to hear about the break from school. Were your daughter's doctors able to try the balloon dilation?

 

[Maya142]

So M was admitted last Tuesday when she had a regular GI follow up. Her GJ tube had flipped for the 12th time, so she had not been tolerating feeds for the last couple weeks. The clip was supposed to hold the tube in her duodenum for 3-4 weeks -- it lasted less than 1 week!

Anyway, she was malnourished and looked terrible so her GI admitted her. She had an enteroscopy the next day to see if they could find the stricture. They could not!! In fact, her small bowel looked pretty good!

So we are still not quite sure what happened. They weren't able to get all the way through her small bowel and it's possible there was some narrowing lower down but we're not going to do anything right now.

It's also possible her duodenum (the third portion) is just slightly narrowed and at that point looked like a stricture. Or it's possible everything is perfect and who knows what the GI who did the previous scope saw?!

Anyway, since her small bowel looked good, they decided to place a J tube. It's a more involved surgery than the G tube (which is just a hole in the stomach). For a J tube, they used part of the intestine to make a blind "tunnel" for the tube to make sure it stays in place.

She had surgery on Thursday and was home Sunday night. She has three incisions - two tiny ones and a larger one through her belly button. The first two days were pretty rough - LOTS of pain till they figured out the right dose for her PCA (pain pump) and she had trouble urinating and had to be catheterized twice (not fun and we were not warned it might happen).

But Sunday was a turning point and she really started feeling better, her gut woke up and was able to switch to oral Morphine and was allowed to go home.

So we are home and she is slowly recovering. Walking is much easier. Sitting up is still painful, as is any activity that uses her abdominal muscles. She is feeling much better though and was all ready to go to the mall today (I said no to that).

She is supposed to go back to school next week if all goes well. She is finally getting more calories through the J tube, so that is great. She still gets tired very quickly and is still on quite a bit of Morphine so we will see.

 

[pdx]

What an ordeal! But I'm so glad to hear that she may not have a stricture, and hopefully her tube will stop giving her so much trouble with this new placement. I hope the recovery from surgery is fast and trouble-free from here on out, and that she'll be back to school soon.

 

[kimmidwife]

Glad she is doing so much better. We jut had a big discussion with the doctor about the duodenum. The GI told us it is an area that is very tricky. Often disease can linger there and it is hard to visualize.
I am very glad the new tube is working better for her! Hoping she heals fast!

 

[Tesscorm]

Poor thing, she certainly has had to deal with alot! I'm so glad she's beginning to feel better! Wanting to go to the mall a good sign!

Also, glad it seems there is no stricture!

 

[Mehita]

Oh, goodness. So glad to hear it's not a stricture, but what an adventure! I hope she feels better. How are her spirits?

 

[Maya142]

She's doing ok. The first two days after surgery were pretty hard. Now she's mostly worrying about getting back to school and making up everything she's missed. But she's healing well, despite being on Entocort, Imuran and Cosentyx.