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


 
03-21-2013, 04:08 PM   #301
Kimberly27
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Are you on their cancelation list so that you might be seen sooner?

Kimberly
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Mom of 17 year old son with Crohn's
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Metronidazole (Flagyl), Ciprofloxacin, Levofloxacin, Xifaxin, Zosyn, Augmentin-ES, VSL#3
03-21-2013, 06:20 PM   #302
Niks
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I don't think she is, but going to call the hospital tomorrow. She really is in a lot of pain
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Daughter 22, 1. Upper GI and colonic dysmotility with viscernal hypersensitivity.
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3. Nephrolithiasis
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03-21-2013, 06:33 PM   #303
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I'm sorry to hear she is in a lot of pain. Maybe you can get on the cancellation list if not is there any way to get word to the new team that she is experiencing a worsening of symptoms? ((HUGS))
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03-21-2013, 06:38 PM   #304
Niks
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I will call them in the morning. Her vomiting is much better, but pain much worse!! . I don't really know what to think, but she is finding it really hard to manage on the meds she has at home x
03-21-2013, 06:50 PM   #305
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Even IF this is a virus her poor body might not be able to fight it.
I'm glad your calling in the AM.
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Ibd (microscopic)
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dx Juvenile Arthritis
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dx Erthema Nodosum
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Bladder and Bowel Dysfunction
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03-21-2013, 08:18 PM   #306
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i am sorry she is feeling poorly again. I hope they can find some answers. Hopefully when you call them tomorrow they will decide to get her in sooner.
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Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
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Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
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New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
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03-22-2013, 06:10 AM   #307
Niks
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Have called hospital, waiting for a call back! Jaime also went to GP as had hardly any sleep due to pain last night .

GP said her stomach noises sounded very overactive and probably extremely crampy. Do we ease off on laxatives and enemas?! They are stopping the vomiting, so tricky.

He has given her Oramorph to take.

Would be so good to have some good news for a change!
03-22-2013, 08:54 AM   #308
Niks
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Jaime just spoke to the Registrar in Oxford. He thinks that it is just a 'blip' and that her having overactive bowel sounds are good for her. He wants to keep everything the same and is happy with the Oramorph her GP prescribed.

He thinks if she is still struggling over the weekend he may try Amitriptyline. Have googled this and mostly used for depression/anxiety! Although can be used for pain? Anyone had any experience??
03-22-2013, 02:17 PM   #309
littlemissh
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Amitriptylline low dose calms the bowel down and is often used in ibd where there is a degree of ibs, also works to calm pain nerve fibres down so can reduce pain.
The dose for anxiety/depression is about 8-10 times higher than the dose for bowel spasm.
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Diagnosed Crohns small bowel 2010,Gastroduodenal crohn's Jan 2012. Gastroparesis june 2014.
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Perforated jejenum/peritonitis oct 2015, PEJ for enteral feeding nov 2015

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On TPN since March 2016.
03-22-2013, 02:24 PM   #310
Niks
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Amitriptylline low dose calms the bowel down and is often used in ibd where there is a degree of ibs, also works to calm pain nerve fibres down so can reduce pain.
The dose for anxiety/depression is about 8-10 times higher than the dose for bowel spasm.
Thank you! Was a bit confused! X
03-22-2013, 04:33 PM   #311
my little penguin
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^^ yeah that
DS tried it for a while- to try and "help"
but for him since his IBD wasn't under control- it wasn't strong enough to do anything.
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03-22-2013, 04:40 PM   #312
Niks
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^^ yeah that
DS tried it for a while- to try and "help"
but for him since his IBD wasn't under control- it wasn't strong enough to do anything.
Thanks MLP. I think she is so fed up with feeling so poorly she'll try anything!

I really don't know how you all cope when your child is so poorly and so young! Hats off to you all xxx

03-22-2013, 04:43 PM   #313
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Sorry to hear Jaime is not feeling great! Amy tried Amitryptaline when she was having alot of pain. I'm not sure it did alot, but then she is 10 so her dose was quite small. It's worth a try!
03-23-2013, 04:47 AM   #314
DustyKat
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I hope things start to settle for Jaime Niks, bless her.

It is hard enough watching our children but seeing them is pain is just the pits. If you can't get the pain under control and she starts vomiting again I would take her to casualty. This is only my personal experience but the four times I have taken my children to hospital it was for pain I could not control at home and they also started vomiting on three of those occasions, they were admitted each time.

Sarah went undiagnosed for 18 months and had normal after normal result Niks. You are doing a great job hun, it is hard and it is heartbreaking, keep fighting while ever what you are seeing in front of you doesn't match what the docs are saying.

Good luck!

Dusty.
03-23-2013, 06:31 AM   #315
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We're all hoping for good news for Jaime, Niks! I hope they find the right answer for her soon. They are missing something, somewhere!!
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03-23-2013, 06:35 AM   #316
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I agree with Dexky and Dusty (I know shocking) something is still brewing and like Dusty's girl it took awhile to find it.
03-23-2013, 06:50 AM   #317
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^^^And you don't want to find out the way she did!!!
03-23-2013, 06:54 AM   #318
DustyKat
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Shut the hell up Dex! That is why I didn't mention it!
03-23-2013, 07:11 AM   #319
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How!?! Intrigued now!!! Lol.

Thanks guys, hope they work it out soon!!
03-23-2013, 07:30 AM   #320
DustyKat
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When Sarah's tests kept turning up negative results and she was just getting sicker and sicker it all culminated in her being admitted to hospital. Her bloods finally did show something and that was that she was septic.

At this point IBD still wasn't on the radar but I had done some research over that weekend about Crohn's, thanks to a relative, and I told the paediatrician and surgeon I wasn't leaving until they proved to me it wasn't Crohn's. it was decided that they would take her for emergency surgery and remove her appendix to rule it out as a cause for her problems and then have a look around while they were in there. It was an extreme measure but I was more than happy for it to happen because I wasn't getting answers any other way. As it was, when they opened her up they found her bowel to be perforated and infarcted and she had pus throughout her abdominal cavity. She ended up having 68cm of small bowel resected and she came out with her diagnosis of Crohn's. It still breaks my heart to think about it, not only because of what she had had to endure but also because we very nearly lost her.

Ironically her appendix ended up being perfectly normal. I was actually going to say something in my previous post but I didn't want to scare you as I still think Sarah was on the extreme end of things. The main lesson I think though is as I mentioned before...you know your daughter better than anyone, don't let anyone make you feel silly or stupid or a bother when you question them or don't agree with them. Something is going on with your daughter and just because the tests don't necessarily say it so, although she surely does have changes, her presentation is saying something very different.

Dusty. xxx
03-23-2013, 07:50 AM   #321
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Good advice Dusty.
Hard to hear but it gives us all courage to keep pushing until we get some answers. My situation was not nearly as severe but I had to push for more than a year to get my son treated. I knew he was suffering and something was off. If anything I beat myself up for not pushing sooner and hard enough!! Keep at it NIks, you are doing a great job!!
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03-23-2013, 08:07 AM   #322
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That must have been a horrible time Dusty . I'm not done fighting yet!! Hopefully we'll get there before it ever gets that bad.

It is strangely reassuring to know that not everyone came to their diagnosis really easily.

Xx
03-23-2013, 09:00 AM   #323
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Amytriptiline increased Danny's fatigue and did not help his ab pain. My older son tried it for different reasons and it constipated him.

I lost track ... did they ever do the MRE? I think it would be good if her small intestines were looked at - and I guess the pillcam is too risky since it is may be obstructed? (plus it will only show the inside).

I hope the pain starts to settle!
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03-23-2013, 09:02 AM   #324
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Our surgeon, though a surgeon really wants surgery to be the last resort unfortunately there is a time of suffering before they finally say ok enough is enough. Dusty I totally feel for you that last time Rowan was in the hospital and they kept saying it wasn't mechanical I knew in my heart and gut it was.

Best of luck Niks! Hope thing start to normalize all on its own!
03-23-2013, 10:16 PM   #325
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Hi Niks. I'm sorry Jaime is experiencing so much pain now. Amitryptiline can help with pain and with her not sleeping. It can be sedating, so night-time dose might be just the thing for her. If it is too sedating, she could use nortryptiline which is less sedating but works as well for pain. I hope she starts feeling better soon. How long before they feel she's had enough enemas and rule severe constipation out as the cause before they go after that area of adhesions?
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03-23-2013, 10:23 PM   #326
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Caitlyn was on amitryptalline since after her surgery in 2010. It definitly helped with pain and helped her sleep. She was on 40 mg. she just finished weaning off it. We decided to try her without it and see how the pain is. It also really helped her with sleeping. It is important to know that you have to wean off it you just can't stop it. I hope it gives her some relief! Also it doesn't work instantly it takes time to start working. I hope they told you that.
03-24-2013, 02:39 AM   #327
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I almost laugh out loud when Gus' lab results come back normal. You'd think the docs would have figured out that when the children are in tremendous pain (or constantly vomiting, etc...) and the labs come back "normal," that they need to open their bag of tricks and try something less usual to find the right answers.

I'm convinced that this disease is all about layers. There are always more layers that need to be tended to. Case in point...Gus was experiencing excruciating pain and had an MRE in January. It showed extensive inflammation. It also indicated that a severe stricture, located at the terminal ileum, was no longer present. To say that I was skeptical would be an under-statement. He was hospitalized and put on gut rest. We went home after about a week. The pain was gone. He was given his first Stelara injection. The home protocol was to avoid eating and steroids. Two weeks later, we were back in the hospital due to more pain. This time the pain was due to his J-tube working its way up into his stomach. Remove the J-tube, insert PICC line to begin TPN feeding, continue steroids. Scope and GJ-tube replacement done about a week later, no surprises. Gus finally attended seven consecutive days of school...the first time all quarter. Then, bam! More severe pain brought us to the hospital again (third time in three months). A new MRE revealed that the inflammation is better but that terminal ileum stricture they thought was gone/healed...yeah, it's still there. Also a new stricture is forming. We are looking at surgery to resect the terminal ileum and get a good look a the new stricture the first week of April. That will make four week long hospital stays in as many months. I'm ready for a real break!!

That said, I do think that it is not only possible, but probable, that something else will come to light after the stricture is removed. It's just the nature of the beast.

Niks, just keep telling yourself it's a process. Take each part as it comes. You can prepare yourself for all of the "what if's" by doing research and talking to other moms. Both will help you have better conversations with the doctors when the time comes.

So glad we all have each other to get through these tough times!!!
03-24-2013, 05:10 AM   #328
Niks
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Thanks for all your input!

Vtfamily, thanks you for sharing some of your son's experiences. I too am sceptical with tests done.

Her MRE apparently showed nothing serious, we are waiting for her clinic appointment on 2nd April.

She said last night that she didn't know what was worse, persistant vomiting or severe pain. Before her last hospital stay her pain was there, but nothing like she is getting now, but now her vomiting is much much less!!

She thought this morning that her bowel had 'exploded'. Her breathing was extremely fast, she was clammy and pale. She explained it like the pain was unbearable, bubbly, throbbing and squeazing, this is new. I wonder if bowel has gone into spasm? I calmed her and breathing down, she had oramorph and buscopan and it has settled a little, but still there. She tried an enema, thinking maybe something was stuck, but nothing at all came out (third day).

AAARRRGGHHH, when is this poor girl going to get a break
03-24-2013, 05:29 AM   #329
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Oh my Niks.

I will be honest and say I don't like the sound of it at all. You and your daughter should not be dealing with that level of pain at home. If the pain is severe more more than 1 hour and/or new then I would be heading to the ER hun.

What concerns me with our children is that they learn to live with chronic pain and so their pain threshold is often very high. When they do then complain of severe pain then you know it must be extreme.

Dusty. xxx
03-24-2013, 05:36 AM   #330
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I know Dusty

She isn't as bad as first thing this morning, and is really resisting going back, she knows she'll be admitted again, she's barely been home a week.

I think she needs to go back, working on it!!

xx
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