Hello and I'm sorry I've been away so long. N is off in college and seems to be fairly stable and taking care of all his medical appointments. He is supposed to get his remi treatment next week, but he is also scheduled for a colonoscopy next week. Any problems doing the scope (Friday) the same week as the remi (not sure which day as they are waiting for new order before they give him the appointment)? I know a scope should not be a risky or infection prone procedure, but still am somewhat concerned....any idea??
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Is Remi same week as colonoscopy ok?
- Thread starter awmom
- Start date
I don't know about scopes but my son had shoulder surgery (laparoscopic) on a Wednesday and his infusion was scheduled for the following Saturday. Neither his GI nor surgeon were concerned with the risk of infection. I did push his infusion out a couple of days... I felt a bit less worried too but, really, it was moved because of potential shoulder discomfort when 'hooked up' for 3 hours so soon after surgery.
Thanks Maya..... I had my son ask at his last appointment, especially since N always has "symptoms" so we cannot go by how he "feels". The doc said that because his labs have been consistently good and his scopes in the past (this was before his surgery) showed no inflammation, that it was not necessary. I have an issue with that and so will definitely be asking him about this!
I think I will also be asking him about a consult with a Dietitian because he is simply unable to gain weight and that continues to worry me no end! Or maybe also check to see if there is a malabsorption issue.
I think I will also be asking him about a consult with a Dietitian because he is simply unable to gain weight and that continues to worry me no end! Or maybe also check to see if there is a malabsorption issue.
I'm surprised he's not having labs done either. As well as an indicator for crohns activity, I've always thoughtlabs might show some unseen/early side effect from remi as well?? (Not really sure on this, just what I've always thought...) We had some issues with this as well, ie labs not being done, and it turned out the problem was miscommunication between the infusion centre and what the GI wanted. I think it would be worth asking to be sure GI really doesn't feel any labs are necessary or if he's just spread them out and somehow the orders were missed??
I'd also wonder about him being unable to gain weight?? Do you feel he's eating enough to be gaining weight? Or does he have a high activity level where he might be burning through his calories? If you don't think this is the case, I would check on it... Also, would he add (not as a meal replacement) one or two nutritional shakes to his day? Even if he's only will to have one shake, there are shakes that are formulated to be extra calories.
I'd also wonder about him being unable to gain weight?? Do you feel he's eating enough to be gaining weight? Or does he have a high activity level where he might be burning through his calories? If you don't think this is the case, I would check on it... Also, would he add (not as a meal replacement) one or two nutritional shakes to his day? Even if he's only will to have one shake, there are shakes that are formulated to be extra calories.
Thanks Tess....yup, I don't understand the no lab recommendation. His pedi GI always did labs at his remi treatments and this new adult GI was doing labs regularly the first few months he was on Methotrexate. After that, he said it was not necessary. Now he is off the methotrexate and is just doing the remi, and I had N ask him specifically about doing labs when he does his infusion every 8 weeks, and he said there was no need. So I will talk to him next Friday after his scope.
About his weight.....he does not exercise. He eats as much as he can, which is probably less than a guy his age should eat, and has found a nutritional drink that he likes, but I have the feeling he has it as a meal replacement. I think he just can't eat a normal amount without feeling poorly. He's been checked out by several docs and they have done numerous tests, but they cannot find anything and so they say it's IBS. I do think the cooking for him is a little overwhelming so I cook and bring to his college when I can, but even when he was home, we couldn't get his weight up. I was always asking his pedi GI's about his weight and it got to the point where they just told me to stop focusing on his weight
. But I will ask this doc (again) and see what he says.
About his weight.....he does not exercise. He eats as much as he can, which is probably less than a guy his age should eat, and has found a nutritional drink that he likes, but I have the feeling he has it as a meal replacement. I think he just can't eat a normal amount without feeling poorly. He's been checked out by several docs and they have done numerous tests, but they cannot find anything and so they say it's IBS. I do think the cooking for him is a little overwhelming so I cook and bring to his college when I can, but even when he was home, we couldn't get his weight up. I was always asking his pedi GI's about his weight and it got to the point where they just told me to stop focusing on his weight
. But I will ask this doc (again) and see what he says.
FRustrating because I can't imagine there's more you can do, especially when he's away at school. I'm sure you're doing this but try to make the meals you send him as high calorie as possible?? Something else I send S at school are steaks and chicken pieces that are washed, marinated and frozen individually, so all he has to do is cook it (makes it a bit easier).
If N doesn't feel well when he's full, maybe suggest he just sip at an 'extra' shake when he's studying... I've mentioned it here before, so sorry if I'm repeating myself to you, but if you google Boost recipes, they have recipes for a few baked goods made with the shakes, maybe a healthier, higher cal option if he likes muffins, etc.?? If he likes pudding, I've also seen Boost (and other brands) puddings??
But, it's hard when you're not with them and it's in their hands. :ghug:
If N doesn't feel well when he's full, maybe suggest he just sip at an 'extra' shake when he's studying... I've mentioned it here before, so sorry if I'm repeating myself to you, but if you google Boost recipes, they have recipes for a few baked goods made with the shakes, maybe a healthier, higher cal option if he likes muffins, etc.?? If he likes pudding, I've also seen Boost (and other brands) puddings??
But, it's hard when you're not with them and it's in their hands. :ghug:
crohnsinct
Well-known member
My daughter had scopes two days after remi. Gi said it was fine.
Labs should be run on a regular basis. Maybe not every infusion but some sort of schedule. They should be monitoring his liver while on remi.
Good luck with the dietician and scopes!
Labs should be run on a regular basis. Maybe not every infusion but some sort of schedule. They should be monitoring his liver while on remi.
Good luck with the dietician and scopes!
Thanks Tess and crohnsinct. Tess,I send him chicken soups and chicken stews, which i know he tolerates and I feel he should always have on hand in case of a bad day. Also beef stews which are a little higher in calories. I had never thought of sending marinated chicken, but I think it's and amazing idea! Silly question.....Do you freeze the marinade with the chicken, or marinate it, take it out of the marinade and then freeze? Regarding the boost, unfortunately he doesn't tolerate anything sweet. He was actually drinking the unsweetened and unflavored peptament which tastes pretty bad! He did find a drink called Soylent which he says he is tolerating well and he sips through the day.
cronsinct, I am now well armed to insist that they do regular labs! Thanks for the info on the remi/scopes and your well wishes.
Wishing you and yours all the best too!
cronsinct, I am now well armed to insist that they do regular labs! Thanks for the info on the remi/scopes and your well wishes.
Wishing you and yours all the best too!
I marinade the chicken with salt, pepper, garlic, lemon, parsley, bbq sauce, etc, so I just take each piece (or couple of pieces) and wrap it up in plastic. I'll make up 5 or 6 packs and put them all into one large freezer bag (so they'll avoid freezer burn for a while). Like this, there's no marinade to to take the chicken 'out of' as the marinade is just what's coating the chicken (if there's a bit extra marinade, I'll just put a spoon or two of it on the chicken before wrapping it). (Same thing for the steak. I've even done it a couple of times with salmon, although he doesn't like it as much... )
But, I have packaged cooked chicken with gravy - I put everything in a ziploc bag and freeze it. I've told him not to microwave in the baggie but, once frozen, he can just cut the plastic bag and take out the frozen chicken/gravy in one piece. Or, I've told him to run it under hot water and then slide the chicken/gravy out into a pan.
Hope this makes sense.
(Actually, the plastic wrap/baggie is so that I can ensure he doesn't microwave in plastic containers! LOL If I send the glass 'tupperware', I end up losing quite a few! If I send it in the cheaper plastic containers, I worry he'll be rushing and will just microwave it in that container... Putting it in the plastic wrap/baggies forces him to put it in a pan. And saves me money! :lol
I also always send S lots of individual instant rice packs. I always forget the brand name but it's a common rice brand. It's really convenient, takes only a minute in the microwave and he quickly has a side dish. The brand I buy has plain rice (basmati, jasmine or brown rice) or they have a number of flavoured rices (these I haven't tried).
)But, I have packaged cooked chicken with gravy - I put everything in a ziploc bag and freeze it. I've told him not to microwave in the baggie but, once frozen, he can just cut the plastic bag and take out the frozen chicken/gravy in one piece. Or, I've told him to run it under hot water and then slide the chicken/gravy out into a pan.
Hope this makes sense.
(Actually, the plastic wrap/baggie is so that I can ensure he doesn't microwave in plastic containers! LOL If I send the glass 'tupperware', I end up losing quite a few! If I send it in the cheaper plastic containers, I worry he'll be rushing and will just microwave it in that container... Putting it in the plastic wrap/baggies forces him to put it in a pan.
And saves me money! :lolI also always send S lots of individual instant rice packs. I always forget the brand name but it's a common rice brand. It's really convenient, takes only a minute in the microwave and he quickly has a side dish. The brand I buy has plain rice (basmati, jasmine or brown rice) or they have a number of flavoured rices (these I haven't tried).
Glad it's not only S who seems to lose containers and lids! I even told him to just keep a box in his room and, once used (and, hopefully, washed), just throw it in the box... nope, didn't work.
Does N room with others? Another item that mysteriously gets lost are bed linens! Last time S came home with laundry, he had about 4 bottom sheets and no top sheets! :lol: Plus one bottom sheet that wasn't ours and another random pillowcase... I don't even ask anymore... I just wash.
Does N room with others? Another item that mysteriously gets lost are bed linens! Last time S came home with laundry, he had about 4 bottom sheets and no top sheets! :lol: Plus one bottom sheet that wasn't ours and another random pillowcase... I don't even ask anymore... I just wash.