Crohn's Disease Forum » Parents of Kids with IBD » CT scan - some thickening of proximal duodenum?


 
02-05-2017, 02:15 PM   #2071
Niks
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Seems to me she really needs to see a specialist who deals specifically with these issues of motility to find out what is behind this.
She doesn't even have a Consultant anymore, she isn't 'under' any specialist, it is all so frustrating. Gastro at Oxford pretty much ditched her when he realised that her bowel doesn't work, which is something that I'd been asking to be tested for years! She moved on to a Surgical Colorectal Team, but since the stimulator was refused, she has also dropped her. She has her GP and the private Doctor, who did the trial....

I am going to see if I can find a specialist, thank you Kim xxx
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02-05-2017, 03:56 PM   #2072
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That is just ridiculous. I wish you guys could come here to the states. That is just terrible.
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02-05-2017, 04:57 PM   #2073
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Someone gave me this link to a Facebook page for people in the U.K. With GI motility issues,
https://www.facebook.com/groups/GIFTuk/

Hoping you can find some help for her.
02-09-2017, 01:55 PM   #2074
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Someone gave me this link to a Facebook page for people in the U.K. With GI motility issues,
https://www.facebook.com/groups/GIFTuk/

Hoping you can find some help for her.
Thanks hun

xx
02-09-2017, 02:22 PM   #2075
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Keep us posted!
02-15-2017, 04:34 PM   #2076
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Jaime called me today, hysterical. She asked if I was sat down, I thought someone had died!! She had a call from her nurse saying that her funding has been approved and she's having stimulator fillted on 17th March! I can't believe it!

Wooooo hoooo!! After all this time, and it's so close now
: luigi:
02-15-2017, 04:43 PM   #2077
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Yay!! So happy for her!!
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02-15-2017, 04:57 PM   #2078
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That's wonderful!! It's so soon !!
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02-15-2017, 06:19 PM   #2079
my little penguin
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Such great news
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02-15-2017, 09:16 PM   #2080
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That is amazing news!!!!!
02-17-2017, 11:23 AM   #2081
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Fantastic! What good news
02-17-2017, 08:00 PM   #2082
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That's so wonderful!!! And about dang time. I hope it works for her. So does this mean she's back under the care of the colorectal surgeons??
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02-18-2017, 02:22 PM   #2083
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Woohoo! Wonderful awesome news!
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02-19-2017, 09:07 AM   #2084
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That's so wonderful!!! And about dang time. I hope it works for her. So does this mean she's back under the care of the colorectal surgeons??
Yes she's back under colorectal surgeon. She's a little apprehensive, when she was initially told about this procedure, she was told it would be done under general anesthetic, but she's having it done under local. It takes about an hour and a half. When they put in the temporary stimulator, they needed her to tell them when she was feeling sensation and where, so maybe this is why.

Thank you all for your kind wishes. xx
02-19-2017, 08:19 PM   #2085
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Keep us posted!!!!
03-20-2017, 07:30 AM   #2086
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Hi All

Stimulator fitted last Friday. Went well. She's feeling bruised and sore but okay! Just waiting for it to start working. Apparently there's many programmes, so may not work initially, they may need to play with the programmes.

Will keep you all posted.

Nikkie
03-20-2017, 01:27 PM   #2087
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Wonderful news, Niks! I hope she finds the right settings quickly!
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03-20-2017, 05:47 PM   #2088
DanceMom
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Hi All

Stimulator fitted last Friday. Went well. She's feeling bruised and sore but okay! Just waiting for it to start working. Apparently there's many programmes, so may not work initially, they may need to play with the programmes.

Will keep you all posted.

Nikkie
My mother has had to adjust her settings as well. You'll find what works.
03-20-2017, 06:59 PM   #2089
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That is amazing news!!! Keep us posted!!!
03-26-2017, 04:16 PM   #2090
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∑ NG Tube
Great news!
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03-28-2017, 03:09 PM   #2091
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Fingers crossed they find the right setting quickly
09-05-2017, 04:10 PM   #2092
Niks
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Hi all, hope all going okay with you all.

So.... Still not found right setting, but she's working through them for a month at a time so could take some time.

Urine retention getting worse, and having to self catheterize, however tubes so small had to have them stretched (again). This is the exact wording from the letter from the urologist, received today....

"Jaime underwent cystoscopy today and I am sorry to let you know that she has a large capacity bladder and the bladder looked moderately to severely floppy. Her urethral was found to be modestly tight and i performed a dilation. I plan to see her in 6-8 weeks time and we will take it from there."


I don't like "I am sorry to let you know" - but surely can't be dreadful or he would have seen her sooner?

So confused, does anyone have any experience of these symptoms and have any idea what it could be. Could it all be connected?

Many thanks in advance

Niks
09-05-2017, 08:19 PM   #2093
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Has she ever been checked for Ehlers Danos Syndrome?
It might fit the picture.
09-06-2017, 10:20 AM   #2094
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I don't think she has! It's just frustrating that there are more and more things that are going wrong for her.

Thanks for your reply I will check this out xx
09-06-2017, 11:16 AM   #2095
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Sadly we are in the Same boat with my daughter. New things keep popping up constantly.
02-25-2018, 02:31 PM   #2096
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Latest update.

Jaime has had a really scary time. Nothing has really improved. At the beginning of February she woke up with Bels Palsy - face dropped (third time). She was really struggling with the pain from bowels so got admitted to Swindon. Fluids, IV anti-sickness and pain relief - was sent home to take her picolax. She thinks she passed out in the bathroom but the next day she had slurry speech, this got worse throughout the week, to her not knowing where she was, not able to recollect the right words and then only being able to say a word or two together, she also was very wobbly on her feet.

Took her to Oxford, didn't know who should see her, ENT, Gastro, Neurology, Medics. After being up there all day felt she had bels palsy and concussion. Because she 'fell in the river and hurt her head' (sentence took a very long time for her to say). She was sent home. I wondered if it was low B12 so had her GP send her for tests at Swindon, who also felt was concussion. B12 came back fine.

Had a letter to review bels palsy in Oxford last Friday. Neurologist said that you can't get bels palsy more than once, unless infection related.
Which hers isn't. They did lots of bloods including some genetics, and she has nerve conductor tests next month. She is weaker down left side and feeling is not the same on left side.

Jaime just wants to know what is happening to her, if she can do anything to improve all of this and if she will get better/worse etc. It is so frustrating, I hope all of you are doing better xx
02-26-2018, 09:42 PM   #2097
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Oh Nicks,
I am so sorry to hear. I was just thinking of you guys. I hope they get this figured out. She needs a complete neuro workup. I hope they do one. Pelase keep us posted.
03-11-2018, 02:46 PM   #2098
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Really sorry to hear that. Canít believe they still havenít figured out whatís wrong yet!
07-20-2018, 03:22 PM   #2099
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J not been great, really not having any good days.

She has been getting a lot of rectal bleeding, her London Consultant requested all tests sent to her last November and an urgent colonoscopy, which she still hasn't had.

She went to see her pelvic floor team to get programmes changed on stimulator, and we talked through all of this. We mentioned that she had seen neurology and some genetic testing. Her nurse looked on the Oxford system and found a letter dated from the end of May saying that she did 'indeed have a variant of MNGIE'.... I have a copy of this, this letter was referring her for further testing and to a Mitochondrial specialist at a different hospital in Oxford.



This is now ridiculous. Looking at this it is a genetic degenerative disorder, it is not a good diagnosis. I am gobsmacked that this is still in limbo and no one has contacted her for further testing to confirm this.

I have emailed the contact on the letter, but pretty furious

Anyone heard of this????

Hope all okay xx
07-20-2018, 06:23 PM   #2100
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Some have used ivig infusions to treat with some success
But itís extrenely expensive (at least innthe US )
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