Camping/Backpacking and Crohn's?

[xmdmom]

So my 19 year old son would like to spend his fall break on a backpacking trip hiking 8 to 10 miles a day with some other college students. I'm happy he's feeling well enough to consider it but I do have some concerns. He will be in the mountains where cell phones may not work, using a lot of energy and won't be able to eat what everyone else is eating.

He was diagnosed with mild/mod Crohn's at the end of May. He gained weight after being on prednisone, but is still pretty skinny and doesn't have a lot of reserve. He was still anemic (Hgb 11) at last check. He's currently on budesonide and naltrexone, and currently is feeling pretty good, though he did say he had a couple days feeling sick last week. He avoids skins, seeds, nuts, spices, most raw veggies and fruits currently.

I tend to worry so I'd love to hear what other parents think. Any thoughts or suggestions on the trip and/or foods to take would be appreciated.

Thanks!

 

[Tesscorm]

Gosh, that's a tough one... It's so tough when we worry but want them to live unfettered by crohns! I had similar worries about Stephen's activities after his diagnosis...

Stephen was diagnosed in May after being sick for a few months and losing 25 lbs, he was in the hospital for a week on IV Flagyl and began exclusive EN and stayed home one more week. After that, he went back to his usual activities which included 2.5 hours of phys.ed. classes per day (weights, running, etc.) and also played hockey twice a week (one on skates, one running). I worried if he was overdoing it. And, being on exclusive EN through NG pump, he had no nutrition during the day, overnight only. But, he was fine. The only thing that's ever bothered him was long distance running (5-7 km) (both last year and this year), after 15-20 min it would begin to cause him pain. But, this didn't happen with the running in hockey and soccer (which is more start and stop) - I think it was the constant bouncing that caused the pain.

Is he going with friends who he will be comfortable asking to slow down the pace if necessary? When is the trip? Is there time that he can do one or two one-day hikes to see how he feels?

One suggestion is that he take some nutritional drinks, ie Carnation Instant Breakfast (in powder form to lessen the weight). If he begins to have any problem with eating, he might have an easier time with the nutritional shakes and still take in necessary nutrition.

He's been well at college otherwise? I remember reading that this was his first year back at college since diagnosis.

Good luck! :ghug:

 

[Patricia56]

Has he discussed this with his doctor? Are you in a position to say no or just to offer advice?

The anemia is a concern and may be the biggest reason to suggest that next year may be a better time.

Anemia makes you much more susceptible to mountain or altitude sickness. Altitude sickness can be fatal and early recognition of symptoms can be hard since they are pretty vague. But if you don't take action promptly the situation can become dangerous very quickly. I know, having experienced cerebral edema after only two days at 6,000 feet and I wasn't anemic. I now experience symptoms as low as 3,500 feet.

Plus he's been on prednisone and is now on entocort - those meds can give one a false sense of well being that disappears in a physical crisis or under physical stress. Such a crisis can prove deadly if his body has become dependent on steroids.

Given all that and the fact that they will be unable to call for help really would push me in the direction of saying "Next year not this year".

 

[xmdmom]

The trip is over October break 20-27th. He won't be at a high altitude. He doesn't have any chance to hike before the trip though he could go to the gym. He felt quite good when he first got back to school but he decreased the budesonide recently and may be feeling a little bit less well. I can't say no, but I can advise him against it, and he'll listen. I want him to go if he's up for it, because I am thinking (and feeling bad for thinking) :who knows how his health will be in the future. He'll be with a group of students from his school but not sure if any will be friends and the group will need to get from point A to B so... not sure what will happen if he's sick or lags...

Tesscorm: the Carnation instant milk is a good idea!

He went on an outing trip last year and loved it and made some nice friends so I'd like him to be able to do it. I wish it weren't so many miles and days!

 

[rygon]

I went on a 8hr trek up snowdon (uks little mountain) and was fine the other week. But I have also spent 5mins clearing the driveway from snow when I was anaemic and had to lay down cos I was really dizzy...

I'd suggest jogging at a decent speed on the treadmill for 20mins or so and if his bpm goes way to high or he cannot do it maybe he should evaluate what he will be doing.

At the end of the day he knows his body the best and if he really understands whats in for him and thinks he can do it then let him go. At my worst I still went snowboarding for a week and although I had to find a toilet every 20mins and not stay up for the partying afterwards I managed it fine

 

[jmckinley]

That's a tough one for sure. I know my protective instinct would say no, but my other side would want him to live outside of Crohn's. I think I would ask for a Dr visit to discuss the trip and ways to prepare for it and if he is physically ok for it. If GI says ok, let him go. Otherwise, next year...

 

[izzi'smom]

I would be inclined to let him go with his physicians blessing. I don't want this disease to lessen dd's opportunities, though-I am fairly obsessive about it. I would encourage him to discuss his disease with a hiking buddy so they can keep an eye on him. Let u sknow how the convo goes!

 

[DustyKat]

I think talking with the doctor is a good idea. The doc can give him professional and considered advice and if the doc does agree that is okay also advise on what keep an eye out for and what to do should anything untoward occur.

Dusty. xxx