Loeys-Dietz Gastroenterology and Allergy Q&A
28:59-32:41
Q:
Several questions about sort of like general weight gain I know you touched on that, so if we could expand a little bit on, you know, aside from Miralax, exercise, fiber for kids or adults where, you know, like if you've tried those things like what's the next thing?
体重を増やすためには、ミララックスを飲む、運動する、食物繊維を摂るといった以外の方法はありますか？
A:
Yeah, so, so again constipation is a really common problem in connective tissue disorders. It can really make sort of your daily your days difficult, right? because, you know, we have to have a bowel movement every day and if part of that day is spent with something that's frustrating and difficult that really can impact your quality of life.
結合組織疾患では便秘は非常にありふれた問題です。便通は毎日あって然るべきものですが、便秘になるとつらい状況が続き、ストレスでQOLも低下してしまいます。
So important things are the Miralax has to be used daily. You have to almost always precede using it daily with a clean out so a small daily dose keeps the new stool soft. It doesn't do anything about hard stool that's already in the large intestines and so you do need to do sort of a clean out to sort of reset things.
重要なことは、毎日ミララックスを飲むということです。毎日服用することで便を出し切るようにしておけば、新しく溜まった便も少量の薬で柔らかくすることができます。大腸で固くなっている便については、効果がありませんので、最初に大腸を空っぽにして、リセット状態にしておく必要があります。
Exercise is certainly important both for constipation, for disorders of gut brain-interaction, for joint pain that you can get in connective tissue disorders. Daily exercises super important and then beyond that if this has been a long-standing problem as I mentioned there is almost assuredly some, there's three sets of muscles that have to coordinate when you have a bowel movement and two of them have to contract and one has to relax and if they're either all contract or all relaxed you can't have an effective bowel movement, so pelvic floor physical therapy to retrain those muscles can be really crucial in terms of getting all those muscles to work together properly and so if you've had long-standing constipation by and which I mean long-standing constipation is like a year or more pelvic floor physical therapy can really, really help.
便秘や脳腸相関にかかわる問題、結合組織疾患でみられる関節の痛みの予防のために、運動が大切であることは間違いありません。毎日おこなうことが非常に大事です。便秘が長期化している場合、排便に関わる3組の筋肉の連携がうまくいっていない可能性があります。3組の筋肉のうちの2組は収縮し、1組は弛緩しなければなりませんが、これらがすべて収縮あるいは弛緩している場合は、排便がスムーズにできません。この問題を解決するには、骨盤底筋群の理学療法がとても重要です。便秘が1年以上続いているような場合には、大きな効果が期待できる方法です。
One thing I would add is if it's trouble gaining weight that's the concern, you know, again that's one of the symptoms of undiagnosed eosinophilic esophagitis or eosinophilic GI disease, so if you have that as a symptom and no other cause has been identified it is worth seeing a gastroenterologist to get testing to make sure that that is not what's driving your poor weight gain.
私から補足します。体重が増えない場合には、未診断の好酸球性消化管疾患が隠れている可能性もありますので、便秘の原因がわからない場合には、消化器内科を受診し、検査を受けることも検討してください。
There, the, the tricky part becomes there's a subgroup of people with Loeys-Dietz syndrome and, and also Marfan syndrome that when they're little just don't put on subcutaneous fat. It's, it's well described sort of in the community but it's not really understood the mechanism for it. It goes away in, in your 20s but when you're a little kid it kind of, it doesn't matter sort of how many calories we try to pack on. There's just this real difficulty in putting on weight and teasing out whether or not there's some underlying issue that needs to be addressed or you're one of these people with just this inability to put on subcutaneous fat is, is super hard to untangle sometimes and I'm happy to help anyone sort of if they want to send their doctor to talk to me but there are a group of people with that.
ロイス・ディーツ症候群やマルファン症候群などの一部の患者さんでは、皮下脂肪がほとんど付かないという厄介な問題もあります。よく知られている事実ではあるのですが、理由についてはよくわかっていません。20代になれば、そうした問題はなくなります。小さなお子さんの場合、摂取カロリーは問題にならないはずですが、いくら食べても太らないので、実に解決しにくい問題といえます。原因を探って対処するしかないのですが、皮下脂肪がつかない問題については、原因を突き止めることが極めて困難なのです。必要であれば担当医の先生と直接やりとりしたいと思いますが、そうした患者さんもいることはご承知おきください。
The Marfan Foundation did not participate in the translation of these materials and does not in any way endorse them. If you are interested in this topic, please refer to our website, Marfan.org, for materials approved by our Professional Advisory Board.
The Marfan Foundation は、当翻訳には関与しておらず、翻訳内容に関してはいかなる承認も行っておりません。このトピックに興味をお持ちの方は、Marfan.org にアクセスし、当協会の専門家から成る諮問委員会が承認した内容をご参照ください。
