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Gastro problemi i JIA
https://zajedno-do-zdravlja.hr:443/forum/viewtopic.php?f=42&t=395
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Autor:  kate [ 15-03-2010 11:44 ]
Naslov:  Gastro problemi i JIA

Potaknuta ovim pismom na stranom forumu:
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haven't been to this forum in a while, but wanted to share that my daughter's initial diagnosis four years ago (pauciarticular extended arthritis with uveitis) may change next week due to information I learned at the GI round table at the Arthritis Foundation's 2009 National Juvenile Arthritis Conference.

For four years, I have been asking my daughter's various doctors (probably around 8-10 doctors over the years) about what I considered to be abnormal GI issues but my concerns were noted, but (I felt) dismissed as possible side effects of her medications or eating junk food (which she rarely eats). It was at the JA Conference that I got some information that I was able to take back to the arthritis clinic.

A rheumatologist that we hadn't seen before listened to my concerns and nodded his head like other doctors had done. He left and then (to my surprise) returned a little while later saying he had looked at my daughter's chart again and thought we should go ahead and rule out a GI illness.

Fast-forward a few months and several tests later... my daughter ended up having a colonoscopy and EGD last week. The doctor took numerous biopsies throughout because she found a lot of ulcers and inflammation. The doctor said she wasn't expecting to find much, if anything, especially given my daughter is already on the medications she'd give to patients with Crohn's or another Inflammatory Bowel Disease. We will find out the biopsy results next week and what the next steps will be.

On the one hand, I'm not looking forward to opening a new chapter in this journey - it feels like I'm about to start over with research, etc., but on the other hand, I'm glad I didn't give up trying to make a connection between the JA and the GI issues. I have spent countless hours talking with other parents with kids with JA, doing research online, reading books, etc. but never had enough information to go on other than a "gut instinct" (no pun intended!). We did see one gastroenterologist after the JA conference who dismissed my suggestion there was a connection (he was certain it was a dairy intolerance), but the second gastroenterologist was more open to digging deeper since the rheumatologist requested we rule things out.

Anyway, I wanted to share this information in case anyone is trying to decide whether or not to invest the money to go to Philadelphia this summer. Aside from the conference being a great opportunity for our children to have some fun and be around other children who understand what they're going through, it could lead to some answers if you're like me and haven't felt comfortable that your child's diagnosis is complete, or if you have lots of questions and don't feel like you're getting the answers you need.
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gdje je majka sumnjala da artritis ima veze s gastro problemima i na JIA konferenciji došla do informacija u suradnji s jednim lječnikom da bi to moglo biti točno. Napravili su kolonoskopiju koja je potvrdila upale u crijevima, pitam vas, da li su vaša djeca imala kakve gastro probleme (proljeve, povraćanje, bol u stomaku..)

Autor:  dragica1 [ 17-03-2010 19:55 ]
Naslov:  Re: Gastro problemi i JIA

Pa kod moje M zna biti ponekad bol u trbuhu,ali više me muči što ona ima jako rijetko stolicu.
I sve smo pokušavali,čini mi se da je zbog MTX,jer dok ga popije problemi.

Autor:  kate [ 17-03-2010 21:20 ]
Naslov:  Re: Gastro problemi i JIA

Jesi to spominjala Lani?
Šta ste pokušavali: čajem od šipka, bananama, tamnom čokoladom, rižom...

Autor:  dragica1 [ 17-03-2010 21:30 ]
Naslov:  Re: Gastro problemi i JIA

Jesam i rekla nam je da kupimo sirup Portolak,nema rijetku stolicu nego je ima rijetko ( nisam se dobro izrazila) znači svaki treći dan( ajmo reći ).
Sve smo pokušavali od prehrane,sirupa,masaže i sve što smo čuli da djeca smiju i da je provjereno.
Primjetila sam da pogotovo kad popije MTX više se žali na trbuh,kao boli je,e sad dali je povezano ili nije uz tablete neznam.
Nekak nam pomogne najviše maslinovo ulje ( masaža).

Autor:  kate [ 17-03-2010 21:47 ]
Naslov:  Re: Gastro problemi i JIA

Aaaa, to je već bolje.
Ujutro mlaka voda (što više, al bar čaša) na tašte i šetnje.

Autor:  dragica1 [ 17-03-2010 21:52 ]
Naslov:  Re: Gastro problemi i JIA

Da vodu pije kao deva,i nebi vjerovala da ne voli baš prehladnu, ali ni mlaku pa nekak kombiniramo. Uglavnom pazimo na prehranu i živimo.

Autor:  kate [ 17-03-2010 21:54 ]
Naslov:  Re: Gastro problemi i JIA

važno je da je voda na tašte, čak bi dobro bilo prije ustajanja dok je još u krevetu

Autor:  rola [ 20-05-2010 07:52 ]
Naslov:  Re: Gastro problemi i JIA

Evo nama se sad i dokazalo (nakon obavljene gastroskopije) da zbog uzimanja NSARa ima kiselinu u želucu i treba uzimat Controloc 20mg.

Autor:  rola [ 16-07-2010 06:54 ]
Naslov:  Re: Gastro problemi i JIA

Dobili smo otpusno pismo iz bolnice- R ima kronični gastritis, a prema nalazima kalprotektina iz stolice (koji je povišen) i kojeg se sad treba pratit postoji sumnja na upalu crijeva pa ovisno o tome u 9.mj. nas čeka i kolonoskopija. :(

Autor:  kate [ 16-07-2010 08:54 ]
Naslov:  Re: Gastro problemi i JIA

taman me razveselio tvoj drugi mejl, kad vidim ovo...jel to od NSAID ljekova ili nitko ništa nije komentirao?

Autor:  dragica1 [ 16-07-2010 10:51 ]
Naslov:  Re: Gastro problemi i JIA

Rola bez riječi sam :(

Autor:  Mare [ 16-07-2010 11:41 ]
Naslov:  Re: Gastro problemi i JIA

uh Rola...prizemljila si me :( zar kolonoskopija? Zao mi je jako

Autor:  rola [ 16-07-2010 13:44 ]
Naslov:  Re: Gastro problemi i JIA

To je sve od posljedica uzimanja Movalisa. (kao normalno je to kod reum.bolesti) :(

Autor:  mamica [ 16-07-2010 15:28 ]
Naslov:  Re: Gastro problemi i JIA

A baš mi je žao, jadni mačići pa ništa da ih zaobiđe.

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