Is surgery the answer?

[awmom]

Hi all,
I am the mom of a 17 yo boy who was diagnosed with Crohn's when he was 14 (RA when he was 10). He has been on prednisone, pentasa, 6-mp, and remicade. His symptoms are under control as long as he stays on a fairly restricted diet (gluten/dairy free, no fruits, tomato...). He has a stricture but it does not seem to be causing any problems, however, it prevents a proper view of his TI (which is his problem area) in a colonoscopy. The biggest problems he has are that he is very underweight (94 pounds for the last 2 years), his somewhat limited food repertoire and inability to eat enough without feeling bad, and then, of course, the social problems that come with not being able to go out to eat with his friends. Our regular GI said "this is probably as good as it is going to get". We went for a second opinion at Texas Children's Hospital and they suggested taking the damaged part of his intestine out surgically. He does dot feel any other medication would work. This surgery scares me like crazy!! I think I would feel differently if he were having pain or terrible discomfort. On the other hand, it would be amazing to see him gain weight, maybe grow some more, and be able to socialize and eat more freely.

I would love to hear any opinions or experiences with this type of surgery and its recovery, or any who have been able to avoid it after it has been recommended. Many thanks in advance

 

[Tink572]

My son just went through surgery last month. He was 13 at the time, but has since turned 14.

For a little background, he was diagnosed at 9 with Crohn's. Had relatively few symptoms--lack of growth was his main symptom. About a year ago he had a repeat colonoscopy/EGD and found severe disease in about 4 inches of his terminal ileum and was started on Remicade. The doctor talked surgery at that time, but the surgeon didn't think it was necessary yet.

He has been getting Remicade every 8 weeks, and 4 weeks after each Remicade treatment he was having severe vomiting. Looking back, the doctor thinks the Remicade was working for that 4 weeks, then his stricture was closing up a bit, and it was making him vomit.

Fast forward to a month ago. He was admitted to the ER with severe vomiting and a stricture in that exact spot in his terminal ileum and had surgery 4 days later. The surgery was done laparoscopically, just 1 incision into his belly button. He was closed with no problems and released 6 days later.

In the 6 weeks or so since surgery, he has gained about 8 pounds (has gained 18 in the last year since starting Remicade!!) and has more energy than I ever remember him having. He is back to my happy boy, playing, riding his bike, doing what boys should be doing! He is still smaller than all the kids in his grade (yes, ALL of them!), but he is eating better and now that the diseased area is out, his endocrinologist really thinks this is going to help him grow and gain more weight.

Good luck with your decision. I know it's a tough one to make! Really, for us though, the only thing I would have changed would be that I would have done the surgery a year earlier!

 

[Tesscorm]

I'm so sorry you're facing such a difficult decision! I'm glad you've found this forum - you'll find lots of info, advice and lots of members willing to share their knowledge. And the understanding and support is incredible! :ghug:

My son is 18, was diagnosed just over a year ago. His treatment was been Enteral Nutrition (formula only for six weeks) and EN has continued to be his maintenance treatment since then (1/2 dose plus a regular diet added back). You don't mention that EN has been a treatment for your son in the past. EN has no side effects, provides all the necessary nutrition, allows for bowel rest, has anti-inflammatory and healing properties and has a comparable success rate at inducing remission as do steroids. Prior to being diagnosed my son lost close to 25 lbs., within 3 months of diagnosis (6 weeks formula only and then formula plus food), he'd gained 30+ lbs and has stabilized there (5'10", 160-165 lbs - he was 127 lbs when hospitalized). Please note EN is not as commonly used in the U.S. as it is elsewhere - don't know why as it is often the first treatment option given to children in other parts of the world. Over the long term, EN is not as successful as meds at maintaining remission (we may be facing meds soon) and I'm not sure that it would have any benefit for RA. BUT, there are many kids here who use EN as a supplement to their medications and diets (crohnsinct, mylittlepenguin, Twiggy, mom2oneboy are some parents that come to mind). As far as I know, there is no conflict in using EN with any med as it is a nutritional formula. There is more info available in the Treatment section under Enteral Nutrition and there is an informative thread in this forum, under the Diet subforum called Kids on Enteral Nutrition.

Another treatment you may want to look at is Low Dose Naltrexone - while there are a number of members here who have found success with LDN, there are not a lot of studies available so many GIs are either unaware of it or hesitate to prescribe it (long story short... it is not an experimental drug but was developed for other uses years ago, now generic and drug companies do not fund testing on generic drugs). It is a very low risk medication. LDN 'may' also have some benefit for RA but I'm not sure about this. Again, there is a subforum under Treatments for LDN with more info and another thread in the Parents section for LDN.

My son has not faced surgery so I have no experience with that but, I do know that there are many members, including kids, who have had surgery and have done very well afterward as was Tink572's experience! I'm sure some others will be along.

I hope that whatever route you choose to take will bring your son some lasting relief!!!

:ghug:

 

[DustyKat]

Hi awmom and :welcome:

I am so very sorry to hear about your lad...:hug:

Do you know how big the stricture is?

Do you know if it is caused swelling (oedema) or is it scar tissue?

If it is scar tissue then the doctor is right, no amount of medication will change it. Scar tissue is hard and inflexible, just like you see with a scar on your skin, medication will not penetrate it nor will nutrients.

Do you know what your son's bloods, including inflammatory markers are?

Has he had a faecal Calprotectin test done? This tests for inflammation specific to the bowel.

Tess is spot on about EN and it may well be worth a try in your case for all the reasons she has given.

The one thing that does concern me is when you say that he can't eat enough without feeling bad. That and the fact that he has failure to thrive means it is causing him problems even though they aren't what you would normally think of when someone says is he having problems. EN will likely help with those problems but then you face the issues again as you pull back from it if it is scar tissue that you are dealing with.

Both of my children have had the surgery that is being suggested for your son. They had it due to acute complications so I am coming from a different angle to you. It sounds like your boy has stricturing Crohn's whereas my two have fistulising. Having said that, surgery for both of my children has been very successful. They both required open surgery but their post op recoveries were quite speedy, given their circumstances, and uneventful. My daughter had her's in 2006 and my son in 2010 and both have been in remission since that time. They have both gone from being extremely ill and severely underweight to fit and healthy and living life to the full!

I hope by coming here we are able to allay your fears a little and also help you with the heartbreaking decisions you have to make for one you hold so very dear.

Good luck and welcome aboard!

Dusty. xxx

 

[Sascot]

Sorry to hear your son isn't doing so well. I would agree that EN would be a great route to go even if it's just to get some nutrition into him. If he can manage one like Modulen that is supposed to be anti-inflammatory as well so that it heals ulcers, etc. My son did very well after 8 weeks exclusive on the Modulen (via NG tube). As for the surgery, I would think it would be a good idea to get rid of the problem area as then the medications would have a good chance of getting/keeping him in remission. As far as I am aware medication alone cannot deal with a stricture. Hope it goes well if you end up with the surgery!

 

[awmom]

Gosh, you guys are amazing....thank you so much for your replies, suggestions, and empathy. He did do 8 weeks of EN about two years ago and low and behold, he did grow a bit shortly thereafter, and his inflammatory markers got much better,though he did not gain weight. I had actually forgotten about that route, though he is reluctant to ever drink a supplement again it will be a good tool to use if he gets in trouble.

We also tried LDN during the summer but he was also on remicade and I know there is controversy as to whether one can take the two together. He did not notice much difference. They did do a calprotectin when he was first diagnosed and it was the highest the doc had ever seen! His inflammatory markers are great now, which has me a bit confused. I believe the stricture is scar tissue because of how the dye reacted on his MRI. What I don't know is how his tissue is beyond the stricture and am wondering if maybe I should ask for a pill cam. Did they use that on any of your children?

I feel so much better after talking with you....if he needs the surgery it doesn't seem as scary any more. I would like to ask one more question....how long is the recuperation period? I'm thinking about how many days away from school, and how long it took to reintroduce regular foods. Thank you so much for your replies. You have helped more than you can imagine.

 

[my little penguin]

Here is the thing on EN alone my DS did not gain an ounce but when we were at half dose plus food he has gained 20 lbs.
Since he would just be using it to help gain he could do the tastier drinks .
Ensure / boost carnation instant breakfast.
We use peptamen jr since it only uses the first few inches of the small intestine to be absorbed.
Good luck

 

[awmom]

We have never tried the half dose...my gosh, it certainly is worth trying. That is amazing weight gain. We also have never tried the peptamen. How many does he drink in a day?? Thanks a million to you and all for sharing your kiddos experiences. It sounds like they are all doing well....it makes me so happy to hear that!

 

[DustyKat]

If a pill cam is on the cards ensure that a dummy run is done first. There is a very real risk when there is narrowing that the pill will get stuck and that can mean surgical removal.

An alternative to that is an MRE. My son has had enterography done and it was very accurate at predicting exactly how much terminal ileum was diseased.

I can see how your son is having food issues but has great inflammatory markers. For all intents and purposes, clinically, he may well be in very good place but the scar tissue, although not inflamed, is causing issues with food intake as it causes problems as it passes through the affected area of bowel.

My kids were both in very poor condition leading into surgery and they had open surgery. They both were able to return to school 3 weeks post operatively and my son, older than my daughter when she had her surgery, actually he was your son's age, was able to drive long distances 5 weeks post op and he started up soccer training at this time too. With him I found the beginning of week 4 post op as the real turn around. At was at this point he was able to move freely and his old personality started to emerge. It was a joy to see!

Food wise he was able to eat regular food once it started to be introduced post op in the hospital. They started slowly but by discharge he was able to eat what he pleased.

Dusty. xxx

 

[Tesscorm]

Same experience here with EN. Stephen only gained about 10 lbs while on formula only (6 weeks) but then gained 20 lbs over the next 6 weeks while on 1/2 dose PLUS regular diet.

 

[Tesscorm]

Just saw your other post ... Stephen ingests 1500 cal per night (he uses an NG tube and pumps the formula overnight), five nights per week. Our dietitien has told us to maintain the 1500 cal level regardless of which formula we use. His current formula is 1.5 cal/ml. I believe Boost Plus and Peptamin 1.5 have the same cal/ml. We were told it was okay to use formulas at 1 cal/ml, however, this increases the volume that he must drink daily.

 

[Jennifer]

Hi awmom! Sorry to hear about the possible surgery. I also had surgery when I was 17 in the same area. I've been in remission ever since (been 13 years now). You can check out my success story here if you like: http://www.crohnsforum.com/showthread.php?t=19406

Surgery sounds scary but it really does have great results and quite honestly you don't want to wait until its an emergency. Mine was causing similar complications so they just removed the diseased portion (8 inches removed of TI and some colon). Sure other diets may help but he's dealing with a stricture, most likely mainly scar tissue and that cannot be reversed and puts him in danger of an obstruction in the future. With cases like this sometimes surgery really is the best option.

 

[awmom]

Thanks again for all of the info and for sharing your experiences. I am going to try to get some peptamen today. He does not tolerate the ensure or boost very well. I wish we had done NG or button feedings earlier, but the docs here were reluctant to consider it. I am in the process of getting an appointment for a second opinion although in my gut, and after hearing from you I think surgery is the way to go. I may also make an appointment with the surgeon to get more information. Thanks to all of you, you have given me so much encouragement. You are an amazing bunch having faced such difficult situations and I hope that all of you and your children/families do well for all of the foreseeable future. I hope to give to others the help that you have given me.

 

[Tesscorm]

Good luck at your next apptmt!!! I hope you get the answers that will make you comfortable in your decision! :ghug:

Let us know how things go!

 

[my little penguin]

DS drinks peptamen orally.
It is more broken than boost ensure.
He is eight so he drinks about 3 cans a day - 750 cal.
Good luck with your appt