Stricture Surgery Advice

[Mehita]

I've been posting about my 12 year old son in the parents forum, but would love any advice others might have as well, particularly if you have or had experience with a small intestine stricture.

Twelve year old boy, dx at age 8 with "mild" Crohn's via colonoscopy, endoscopy, and biopsies. First flare at age 11 due to a 13 cm stricture in the jejunum, was put on prednisone and Pentasa. I'm not sure he ever fully went into remission. Ended up on pred again 6 months later.

Primary symptoms have been vomiting, stomach aches, constipation (ribbon like poops) and nausea. He gets full very fast after meals, even small frequent ones, and literally spends an hour having a BM. I've sat with him and he is truly having ribbon BM the entire time. About 75% of the time, he's nauseous or has a stomach ache after eating. He is gluten free due to Celiac and also low residue/low fiber due to the stricture. I'm finding it very hard to know what to feed him anymore. Tube feeding has been talked about but after a NG tube for his most recent MRE, cooperation is not likely. He hasn't started puberty yet.

We just had a second MRE about two weeks ago. Nothing has changed from one year ago, stricture may be a little shorter, no active Crohn's anywhere, all other organs are good and very minor inflammation.

Gastro said we can maintain status quo (Pentasa & diet), start 6MP (though there was very little inflammation), or consider surgery. Gastro is favoring status quo - but gastro does not see how difficult day to day life is for us.

Quality of life is definitely taking a nosedive. He's missed entire classes in school, missed out on extracurricular activities and family events due to either nausea, stomach aches, or being in the bathroom with lengthy BM's.

Quite honestly, I'm leaning towards surgery, mostly because all of his symptoms can be tied back to the stricture and there is no active disease anywhere else. Also, that's what my mothering instinct is telling me. It's all stricture, stricture, stricture.

I have my running list of questions for our surgery consult. Strictureplasty, resection, balloon dilation, recovery, quality of life post surgery, meds, etc.

Thoughts on our situation? Any advice that you can share with strictures you've had? Or surgeries? Post op recovery? Complications? Don't hold anything back - we need to be completely educated before we make this life changing decision.

Thanks!

 

[Stressed Mom]

I'm sorry your struggling with this very difficult decision. My son was having very similar problems and missed a lot of school, couldn't leave home and his quality of life went downhill quickly. With the pain, diarrhea, lack of energy he could hardly function some days. Then the partial obstructions started so he couldn't even eat was put on fluid diets for days at a time which caused even more weight loss and he was already under weight. It got so bad that he could only have fluids because even pudding and soft foods would block him up and increase the pain, vomiting and then constipation.

We decided to go ahead with the surgery in hopes to improve his quality of life and get him back living again. It was the right decision for us, the recovery was difficult but well worth it now. He can eat again, his colour is back in his face, he is gaining weight (not much but a few lbs), he even went to a movie with his friends for the first time in months. He is currently on Humira only we haven't started taking the aza again yet as we want to see how good the Humira works on it's own. His GI took him off Pentasa because said it was a drug that he feels no longer has benefits for CD (I don't if that's just his opinion or if there have been studies I'm just trusting him).

The resection was very scary to us as well but we came to a point that we needed to do something and this was the path we decided to take, I still hope and pray it was the right choice but for now he is able to enjoy his life again.

I wish you and your son all the best and do understand how extremely difficult it is to make these decisions for our children. Dusty is a great person to help guide you and knows about the multiple options available.

You will make the right decision for your son and get him through this, we love them so much and when they hurt we hurt but we do make the best choices for them with the information we have :ghug:

 

[emmaaaargh]

I was in a situation very similar to your son's when I was 11 - in remission, but a stricture was building in my small intestine and causing problems. My only symptom was weight loss and failure to absorb food properly, but that's very typical for me in terms of Crohn's symptoms so we knew something was wrong.

Because there was no active disease we chose surgery. It wasn't a scary thing at all! The surgery itself was laparascopic and took 8 hours, but recovery time was a matter of days (would have been even shorter if SOMEBODY hadn't failed to take me off morphine at the correct time). I went on EEN for 6 weeks after for bowel rest, and then everything went back to normal. Better than normal, even! I grew tons and put on loads of weight, and I was as close to normal as I've ever been. Since then, I continued on Pentasa until I had another flare.

It might sound like I'm making the whole surgery thing sound wonderful, but that really was how it went. There were a few ups and downs - like my NG tube that they placed during surgery being too far down to remove any bile, so they had to hoist it back up (that was actually kind of funny), or the hospital giving me two meals after five days of not eating and then sending the doctor round to break the news that I couldn't eat and then offering me psychiatric help when I burst into tears. But the actual surgery experience was fantastic and once I was off morphine I was walking to the toilet and recovering so fast!

Again, I'm kind of terrified of sounding like I'm sugarcoating things since surgery is indeed a big thing. But it helped me loads, and I was back to being a mild case for a few years!

Hope this has helped - and I hope you find a solution for your son soon, too.

 

[Mehita]

Were your surgeries laprascopic?

 

[katiesue1506]

Has anyone mentioned trying to dilate the strictures during colonoscopy instead of surgery?

I've had dilation the last 4 or 5 scopes I've had. This last scope in September suggested that I might not need redilation and I should be okay. My stricture is scar tissue, not inflammatory.

I will say this-- last scope I had two areas dilated (terminal ileum and splenic flexure of the colon) and due to having been on prednisone for the better part of a year and having active inflammation in the terminal ileum, my dilation at that point perforated. My splenic flexure one was successfully dilated, but the perforated area had to be removed and I ended up with a temporary ileostomy.

I don't want to scare you about the risk for bowel perforation, it only happened to me because of the extensive active inflammation and long term steroid usage (causes tissue thinning).

I really still feel like dilation is a good feasible solution to surgery, even though I had a dilation perforate. Especially in someone younger that you might want to stave off surgery for. I have my reconnect surgery at the end of the month and my surgeon stated that she doesn't really want to remove the stricture in my splenic flexure because it has responded so well to dilation (she would rather not have to deal with watching two anastomosis areas during recovery).

 

[Mia E]

Hi!

I'm 28 so a bit different from your son, but I found surgery greatly increased my quality of life. For about a year and a half I had the symptoms of a stricture; extreme pain, vomiting, nausea, bowel spasms, feeling full after meals and irregular BM? I know how much your son is going through and it is so tough!

At the time I didn't have a diagnosis so it was a guessing game for a long time. It's probably easy for the drs to say, oh but it's his crohns, but it doesn't mean that him going through that is ok! I know that he is young so maybe the doctor is considering his long term options, having surgery so young and what that means for him and he grows. It'll be important for you to discuss it throughly with your dr.

I had a resection of part of small intestine, ileum and part of large intestine. It Was laproscopic, i Took A while to recover because i had lost a lot of weight and hadnt been Eating. Since the surgery I can't say everything's been great. I am on pentasa and 7 months after surgery I had a flare and am on a reducing dose of prednislone. I may be considering stronger medication at this stage. I know people have increased BM after surgery of this type, I was lucky to not have.

On the whole though for me it has made a big difference, I can walk more than 10 meters without throwing up, I can walk up stairs again and go out to dinner with my husband without throwing up on the street after! In the end those the problem with this disease is that it is a guessing game, that's the problem, if we all could have crystal balls it would make our decisions a lot easier!

Good luck x

 

[Mia E]

Ps yes katie they discussed dilation for me but the area of narrowing was too long and they did not think it would be successful ie perforation

x

 

[Mehita]

We did ask about dilation, but his stricture is in that area just beyond the reach of a scope and its too long.

We just got home tonight after a 3 day hospital stay. He had another vomiting episode, was having pain, got dehydrated and then vomited again. Time for the ER!!

After much discussion and debate, the gastro docs and surgeons all agreed it's time for a resection. We'll be going back in a couple weeks. We found out his stricture is only 3mm in diameter. No wonder he's so miserable! And after pouring over his last two MRE's they're pretty convinced its all scar tissue. While it stinks that he's so young, it's time. And having to do this electively vs as an emergency allows us to prepare, plan, and get the best of the best pediatric surgeon.

What kind maintenance meds are you all on?

Thank you for your replies. While I know there can be complications, I have to admit I'm (cautiously) excited about how much his life might improve.

 

[emmaaaargh]

My surgery was laparoscopic, which probably accounted to my recovery time. I could sit up pretty much as soon as I, uh, woke up.

After my surgery I did a six-week course of EEN to allow bowel rest and make for easier healing. After that I carried on with my Pentasa since I'm pretty sure I was still a fairly mild case at the time, but with a dose of 2000mg daily instead of 1500mg. I only started Azathioprine after a major flare two or so years after the surgery.

I definitely agree with you about elective vs emergency, and I'm right with you there on being excited about the possibility of improvement! Hope everything goes well.

 

[Stressed Mom]

My son's surgery was done laparoscopic as well and we were also nervous about the possibility of an emergency surgery while waiting but thankfully made it through.

He strarted back on Humira about 4 wks after surgery, we didn't want to start back on it right away so things had time to start healing before we got back on meds that would slow down the healing process. He may start taking the aza again but we are waiting to see the specialist at the end of month to decide if both meds are needed at this point.

Once my son stopped the pain meds he started getting diarrhea but so far has been able to control it with psyllium husks and diet that were suggested by other members here :smile:

The recovery time was a little longer than we expected but his pain tolerance was pretty low, he had never even had stitches before so this was all 'new pain' for him and didn't know how to deal with it right away. I took a week and half off to stay home with him until he could get around better and care for himself.

His quality of life is sooooooo much better now, he does still get nauseous (but no vomiting) sometimes but just takes gravol for it. It was all worth it and was the right choice for him. He feels much better, can enjoy eating food again without the pain and cramps or obstructions. The first couple days after the surgery were the hardest but then every day gets better :smile:

We wish you and your son all the best and hope he feels much much better after the surgery :ghug:

 

[Mehita]

I'm sorry... I have so many more questions.

How long we're you in the hospital?

How long after you got home before you returned to school/work?

I'm assuming catheters are involved? We have yet to tell our son about those lovely things.

What was the diet like after? How long before normal food?

Did you do an epidural?

I've got a general idea of things but would love details from you guys. I do know that his surgery will not likely be laparoscopic because of its location. They said they would start laparoscopically, but will likely need to make a full incision.

Thanks guys!

 

[Stressed Mom]

No problem at all I will do my best to answer any questions you have.

We were in hospital for 6 days.

I went back to school about a wk and a half after my son came home from hospital but only half days and a friend or family member would check in on him.

He did have a catheter for 2 days after the surgery, he was really scared about having one but was very thankful for it after surgery because he didn't have to get up and move around. Also, they insert it after they are put out for the operation so don't feel it going in.

My son did not want the epidural and chose the pain pump instead. He had a spinal tap done a few years ago and still has issues so wouldn't go for anything in his back. I do think it would have controlled the pain better but he was not confortable with it because of the spinal tap.

He started a normal diet on day 5 in the hospital, I was surprised that he wasn't on a soft food diet but went straight to a regular diet on the 5th day.

My son had 1 larger incision and 3 smaller ones and said it was the small ones that hurt the most :confused2:

I hope we helped a little, oh also he hasn't been cleared to start a job or resume his karate yet will know by end of month when we see GI but he is going out now for longer periods of time, like a movie or shopping and is able to lift about 15lbs comfortably.

I'm sure he will be a little nervous and I know as a mom you will be too but it really wasn't as bad as we had feared. We were both so scared I was actually in bathroom with my head in a toilet bowl when they took him in for the surgery was so scared but it was much better than I thought so please try not to stress too much he will feel so much better after and so will you :ghug:

 

[emmaaaargh]

I don't mind answering questions!

I was in the hospital for... I'm not actually sure. I think it was 3-5 days, but I would have been out faster had they noticed that I was still on morphine. I was only supposed to be on morphine for the day of the surgery, but some clever person never came round to check on me and remove my pump - so I don't actually recall much time passing, but apparently it was two days or so!

I got home on a Wednesday, I think it was, and being a kid I convinced my parents to let me go back after the weekend. Of course! I was pretty much fit to go back as soon as I left.

I had no catheter. I am not male, but then I am also uneducated when it comes to catheters - so I have no idea whether I SHOULD have had one or not, but for a while I wasn't producing any waste because I had an NG tube taking everything out of my gut. I did steadfastly REFUSE a bedpan, though (ugh, I hate them), and made the trek (okay, it was only about 20m) to the bathroom to go. Apparently, this is a good thing, because it shows willingness to recover and stuff, and they will let you out faster? I noticed that the day after I started getting out of bed they changed my discharge sticker on the nurse's chart to 'soon to be discharged'.

Someone clever also decided to mess up my diet post-surgery. No food for two days or so, and then the NG was pulled out and I had to wait. Then, breakfast and lunch on the first day (oddly enough, ploughing straight into regular foods, but I wasn't complaining), and at about 4pm my GI came around to start me on EN without telling me. No choice given. I was essentially forced into it, and that pretty much scarred me. Six weeks of elemental feed only, but once that was over, oh it was a relief!

No epidural for me! Just a pain pump. Never pressed the button once. Apparently, this makes me brave, but I don't like pain meds anyway. I also wasn't in much pain, and I'm not sure what to make of that

I'm sorry they're not able to do it laparascopically! In my case I only have three incisions - two little lines about 1cm across and a sort of 'ring' around my belly button. Still, at least it will make for a cool-looking scar - tiny ones aren't as impressive, hehehe!
I really hope everything goes well!! Don't worry much about it - once the surgery itself is over it's all usually pretty much uphill from there.