Are you on their cancelation list so that you might be seen sooner?
Kimberly
Kimberly
-
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CT scan - some thickening of proximal duodenum?
- Thread starter Niks
- Start date
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.
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!
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!
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??
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??
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.
The dose for anxiety/depression is about 8-10 times higher than the dose for bowel spasm.
Thank you! Was a bit confused! X
^^ 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.
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
:ghug:
DustyKat
Super Moderator
I hope things start to settle for Jaime Niks, bless her. :hug:
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. :heart:
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. :heart:
DustyKat
Super Moderator
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. :hug:
Dusty. xxx
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. :hug:
Dusty. xxx
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!!
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!!
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!
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!
- Location
- Michigan, USA
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!
Best of luck Niks! Hope thing start to normalize all on its own!
CarolinAlaska
Holding It Together
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?
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.
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!!!
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!!!
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
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
DustyKat
Super Moderator
Oh my Niks. :hug:
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
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
DustyKat
Super Moderator
I hear you and understand Niks, I have been there too. You are between the devil and deep blue sea on so many fronts. :hug:
You are doing a wonderful job hun. Sending loads of love and luck your way that you are soon on your way back to hospital and your girl gets some much needed relief. I know it is a place that she doesn't want to be but the it is the best place for now so I hope she listens to you! Good luck!
Dusty. xxx
You are doing a wonderful job hun. Sending loads of love and luck your way that you are soon on your way back to hospital and your girl gets some much needed relief. I know it is a place that she doesn't want to be but the it is the best place for now so I hope she listens to you! Good luck!
Dusty. xxx
If you call her dr and tell him how much pain she is in, what is their response?
At some point I would think they would open her up, even if they thought they were only going to remove the appendix to see if that helped. At least then they could get a good look around.
You must be beyond frustrated!!
At some point I would think they would open her up, even if they thought they were only going to remove the appendix to see if that helped. At least then they could get a good look around.
You must be beyond frustrated!!
Her weight has stabalised since coming out of hospital last week, she hasn't lost any more!! She weighs around 47kg/105lb, hopefully she will start gaining now the vomiting is more under control.
She is adamant that she is feeling better now and not going to hospital. She has agreed to call the GI tomorrow and describe the pain and severity that it was this morning.
Last week she got a call back from one of the Registrars that was looking after her on the ward, hopefully he will be able to call her back and advise.
She is adamant that she is feeling better now and not going to hospital. She has agreed to call the GI tomorrow and describe the pain and severity that it was this morning.
Last week she got a call back from one of the Registrars that was looking after her on the ward, hopefully he will be able to call her back and advise.
- Location
- Hull England
God bless u both , she defo needs to go back , focus on t physical changes in her bowel , tethering , thickening dnt let em pass you off ur poor baby in too much pain for ami to solve , keep strong ur doing a marvellous job Xx
- Location
- Michigan, USA
Aww! I had hoped of course this would clear on its own. I really hope they can pinpoint where exactly the issue is. We always tell our Doctors to expect the unexpected. I wish this were not the case with my girl. Now they do expect the unexpected. Unfortunately this leaves them to guessing and their own gut feelings as well. Which as I am sure you know... Doctors and Surgeons like to do things based of facts and evidence. They get just as frustrated as the rest of us. Maybe explain this to her and remind her they want to help her feel better. Needles, tests and surgeries are just sometimes what is needed to help them. Reach deep into her socks an find the bravery you know she has in her. She is so strong sometimes they need a reminder that they can do anything they focus on. I know you are tired as well and dreading this trip as much as she is.
Niks,
You are doing a great job. I'm sure you are exhausted. Hugs.
I agree with Dusty. Go to Oxford. The "exploding gut" comment is worrisome. I put off taking Reed to the ER when his appendix was ruptured because he said he could "push through the pain". After it ruptured, the pain actually went down, so I thought things were getting better. It had been ruptured for days before he had surgery! I still feel bad about not following my instincts. It took eight weeks of strong antibiotics to clear up the body cavity from the bacteria, and peritonitis can be extremely painful.
I'm not trying to scare you. Hopefully the pain for your daughter was caused by gas in the tethered area and nothing more. Is she still gluten free?
Follow your mommy instincts.
Hugs. :heart:
Kimberly
You are doing a great job. I'm sure you are exhausted. Hugs.
I agree with Dusty. Go to Oxford. The "exploding gut" comment is worrisome. I put off taking Reed to the ER when his appendix was ruptured because he said he could "push through the pain". After it ruptured, the pain actually went down, so I thought things were getting better. It had been ruptured for days before he had surgery! I still feel bad about not following my instincts. It took eight weeks of strong antibiotics to clear up the body cavity from the bacteria, and peritonitis can be extremely painful.
I'm not trying to scare you. Hopefully the pain for your daughter was caused by gas in the tethered area and nothing more. Is she still gluten free?
Follow your mommy instincts.
Hugs. :heart:
Kimberly
Good news about the appendix. Whew!
Kimberly
Kimberly
We almost had the same appendix issue with my other daughter who has a chronic pain condition. Had a bit of a tummy ache that lasted four days. Her doctor didn't think it was much but advised me to take her to ER just to check it out, and I very nearly didn't bother. Afterwards the surgeon told me it was a nasty looking thing that was close to rupturing. The scarey thing is these kids do get so used to dealing with pain that their tolerance is so much higher, making it difficult to sort out what is serious and what isn't. Also you get so fed up of going to ER, A&E it becomes harder and harder to go. My Doctor always says she would far rather send someone for tests and have them go to Hospital and it be nothing, than that one time they didn't and it be serious. I know your daughter is not a kid any more but is there some bribe or treat that can be offered to tempt her in some way? Really hoping you both get some relief soon.
Niks,
Sending hugs. I hope you guys get some answers finally. Keep us posted!
Sending hugs. I hope you guys get some answers finally. Keep us posted!
She has promised me she will ring the hospital tomorrow. I really think she needs to go without solid food, it is causing sooooo much pain. Although the pain she had early this morning wasn't after eating, it woke her up.
Maybe if the hospital thinks she needs to go in she may listen, but she may play it down!! Have written her a list of things to tell them and some questions too.
Maybe if the hospital thinks she needs to go in she may listen, but she may play it down!! Have written her a list of things to tell them and some questions too.
Glad the "doctor mom" thing helps, but with those symptoms...if she has a fever, take her to the ER. At minimum, if it were me, I'd send a message to her primary care doctor and her specialists.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
If she is willing...one thing that worked for my son's constipation (his record was 13 days with a bm) is a flavored mineral oil called Kondramel (not sure of spelling) Oil. It tastes like marshmallows. It lubes the entire tract and, eventually, everything s-l-i-d-e-s on out. It worked much better than Miralax did for us.
Maybe you two can relax with a cozy blanket and a favorite girl movie!!!!
One more thought...take a video of one (or more) of her pain episodes. That will get their attention. I've been telling Gus' GI doc about his extreme pain off and on for a long time. Once he SAW Gus curled-up in a ball, rocking himself...THEN he "got it." The GI said I should video it and send it to him when it is that bad. Hey, whatever it takes!
CarolinAlaska
Holding It Together
Niks, I'm concerned that she ruptured at her blockage site. Is she having any fevers?
Carol, her temperature is normal!! 37.5 but when in hospital it was always low! 35 - 36.5. So that's a little odd.
This morning she has pain but nothing like yesterday morning! She's going to call hospital but will have to wait for a call back, will see what they think!! Xx
Hope the hospital has something useful advice. Not too long till the appointment on the 2nd, but every hour seems long when you're watching your kid in pain.
It is definitely worth asking about exclusive EN. When we were told about it, our GI said you had to have a minimum of 6 weeks exclusive for it to make a difference - they went for 8 weeks just to be sure!
It is definitely worth asking about exclusive EN. When we were told about it, our GI said you had to have a minimum of 6 weeks exclusive for it to make a difference - they went for 8 weeks just to be sure!
Niks,
I was thinking along what Carolin said about the possibility of a rupture. With a rupture the pain will actually get better after that really bad pain. Please have her get checked out!
I was thinking along what Carolin said about the possibility of a rupture. With a rupture the pain will actually get better after that really bad pain. Please have her get checked out!
She seems to be managing on the pain relief she has at home, she is just very tearful and unhappy
. Think it is all getting a little too much for her. She didn't get a call back from hospital either, so she just doesn't know what to do.. Just wish I could swap places!
:ghug::ghug::ghug:
Hugs.
Kimberly
Hugs.
Kimberly
Jaime got a call back from one of the Registrars today after literally sobbing down the phone to the answer machine! He has given her his bleep number so that she can contact him and he will get her a bed at anytime if she needs to go in for pain relief.
He wanted her to get checked out by GP to check she hasn't perforated her bowel, and has doubled oramorph and put her on amitroptyline. GP thinks she is 'backed up'!!! How can this even be possible with all the enemas!!!??? Crazy. She also says that if she starts vomiting or gets a temperature to go straight to the hospital, the trouble with that is she is so used to vomiting she won't see it as a new symptom!
She really wants to hold out until appointment next week, I can't see it somehow! She has been in a right state.
He wanted her to get checked out by GP to check she hasn't perforated her bowel, and has doubled oramorph and put her on amitroptyline. GP thinks she is 'backed up'!!! How can this even be possible with all the enemas!!!??? Crazy. She also says that if she starts vomiting or gets a temperature to go straight to the hospital, the trouble with that is she is so used to vomiting she won't see it as a new symptom!
She really wants to hold out until appointment next week, I can't see it somehow! She has been in a right state.
Niks,
It's hard when they are older because we know how much better the compliance is with "buy in". But remember, pain can influence decision making and she may not be in the right mind to decide what is best for her.
Hugs. I still like the idea of going to the hospital, and not the local A&E. I would go back to Oxford, because if something is wrong, you don't want her stuck at your local hospital.
Kimberly
It's hard when they are older because we know how much better the compliance is with "buy in". But remember, pain can influence decision making and she may not be in the right mind to decide what is best for her.
Hugs. I still like the idea of going to the hospital, and not the local A&E. I would go back to Oxford, because if something is wrong, you don't want her stuck at your local hospital.
Kimberly
I'm so sorry that she is in such a state. I know the possibility of going to the hospital before the appt is draining for her but I do hope she comes around to it if this continues since there is no way for her to know the level of seriousness of what she is experiencing.
I'm sending prayers and hugs your way. I hope that they soon find the source of her issues and get her to feeling so much better!
I'm sending prayers and hugs your way. I hope that they soon find the source of her issues and get her to feeling so much better!
Kimberly - We would NEVER go back to our local hospital! She has the bleep number (for Oxford), so if she calls them they will have a bed ready for her, is a bit like a security blanket, but agree it is difficult. She does seem more comfortable but, she is zoned out on morphine!
Clash - I have had to come into work, but when I get home can assess what she actually looks and feels like. Hopefully she is a little better like she says! This morning she was in agony! I don't really know what to think about her GP thinking she is backed up although her enemas haven't worked since Friday.
Clash - I have had to come into work, but when I get home can assess what she actually looks and feels like. Hopefully she is a little better like she says! This morning she was in agony! I don't really know what to think about her GP thinking she is backed up although her enemas haven't worked since Friday.
Tough times. Hang in there.
Kimberly
Kimberly
Niks,
I know this is a totally dumb question, but... did the GP actually do an x-ray or is he just guessing???
Your post took me back to the early days with Gus. His GP and first GI doc almost always attributed gut pain to constipation. It took a long time, but we finally have reached a "level" of understanding where everyone agrees that the constipation is a symptom of the cause of the pain, not the pain itself. Hope you can achieve that understanding as well.
I can never think of these things when I'm at the appointment, but maybe you could call back and ask for an expanded explanation. Something like "since she has had ____ enemas per day/week since ____ and they have been effective in flushing the colon, then what else could explain the pain?"
I really hope Jamie is set on a path toward relief soon. So happy to hear she has the bleep number.
Take Care.
Cheryl
I know this is a totally dumb question, but... did the GP actually do an x-ray or is he just guessing???
Your post took me back to the early days with Gus. His GP and first GI doc almost always attributed gut pain to constipation. It took a long time, but we finally have reached a "level" of understanding where everyone agrees that the constipation is a symptom of the cause of the pain, not the pain itself. Hope you can achieve that understanding as well.
I can never think of these things when I'm at the appointment, but maybe you could call back and ask for an expanded explanation. Something like "since she has had ____ enemas per day/week since ____ and they have been effective in flushing the colon, then what else could explain the pain?"
I really hope Jamie is set on a path toward relief soon. So happy to hear she has the bleep number.
Take Care.
Cheryl
CarolinAlaska
Holding It Together
How frustrating! Poor Jaime! I hope she can find healing and remission very soon! I hope it isn't anything bad. I think if it were a rupture, she'd get very sick.She seems to be managing on the pain relief she has at home, she is just very tearful and unhappy
Just wish I could swap places!
CarolinAlaska
Holding It Together
Zoned out on morphine and in agony...this does not make a good combination for decision making. This is not constipation. Your girl is very sick again. I hate to say this, but she needs a better doctor checking her out! Get her back to Oxford!
Cheryl - no she didn't do an x-ray, but did speak to the Registrar at Oxford. She could feel backed faeces in her left lower abdomen!
She has slept all night! This is really good for her.
I hate it but have to go back to work again today! We have a back up plan with her Dad and brother if she needs it, but I am ever hopeful that what ever was causing this bad pain is easing off.
I have made her put the pager number in her phone and she has given it to her Dad too!
Just hoping for a peaceful few days for her until appointment next week. Thank you for all your thoughts, wishes and support xxx
She has slept all night! This is really good for her.
I hate it but have to go back to work again today! We have a back up plan with her Dad and brother if she needs it, but I am ever hopeful that what ever was causing this bad pain is easing off.
I have made her put the pager number in her phone and she has given it to her Dad too!
Just hoping for a peaceful few days for her until appointment next week. Thank you for all your thoughts, wishes and support xxx
Hi Dusty, thanks for thinking of us!!
She's coping better with higher doses of pain relief and is only eating soft food and drinking her supplement drinks.
Last night she even went out for a couple of hours with some girl friends!!. It is months since she's done that!!
Hanging on for Tuesday appointment!!! Will go armed with list of questions!!
xx
She's coping better with higher doses of pain relief and is only eating soft food and drinking her supplement drinks.
Last night she even went out for a couple of hours with some girl friends!!
. It is months since she's done that!! Hanging on for Tuesday appointment!!! Will go armed with list of questions!!
xx
Thats GREAT news! I'm glad she's feeling a bit better. I hope Tuesdays appointment leaves you with some answers.
Yeah! Seeing friends is a great type of medicine.
Kimberly
Kimberly
WOOHOO enjoy some ME time
Have fun!
- Location
- Michigan, USA
Drinking a beer with you my friend. Summer Shandy yum
Had a great evening !! Was good to destress :ylol:
Just a quick question! Just looking through Jaime's discharge letter again and one of her bloods IGA was 0.74g/L It has an * by it and the numbers to the side are 0.8-3.0, so I am guessing her level is on the low side. Does anyone know what IGA is?
Just trying to work out questions for Tuesday!
:confused2:
Just a quick question! Just looking through Jaime's discharge letter again and one of her bloods IGA was 0.74g/L It has an * by it and the numbers to the side are 0.8-3.0, so I am guessing her level is on the low side. Does anyone know what IGA is?
Just trying to work out questions for Tuesday!
:confused2:
Thanks MLP!
Her Potassuim when admitted was 5.8 which is high and two days later was 2.3! Low! How can that even happen! She ended up having to have IV Potassium was 3.9 on discharge.
Her Chloride when admitted was 108 which is high, but guessing that was down to dehydration. Wasn't retested.
Her Potassuim when admitted was 5.8 which is high and two days later was 2.3! Low! How can that even happen! She ended up having to have IV Potassium was 3.9 on discharge.
Her Chloride when admitted was 108 which is high, but guessing that was down to dehydration. Wasn't retested.
FTI- When I was tested for celiac ten years ago, the IgA blood test was one of levels my doctor was interested in.
I've been gluten free for a decade and feel great.
Kimberly
I've been gluten free for a decade and feel great.
Kimberly
I know it's a lot of work at first, and to see no difference must be frustrating.
What is her IgA December number?
Kimberly
What is her IgA December number?
Kimberly
Potassium can be elevated for a number of reasons. It is common for samples to be artifactually elevated if the blood sample is hemolyzed (which some times happens due to a tight tourniquet when drawing blood.) Acidosis, (acidic blood) can also cause serum potassium to rise. Refeeding after malnutrition can cause potassium to fall , as can treatment of acidosis. (Acidosis is shown by a low blood ph or low serum bicarbonate.)
CarolinAlaska
Holding It Together
Couldn't crohn's be an autoimmune disease caused by IGA deficiency as well?
This makes sense with Potassium! They were struggling to get blood because she was so dehydrated. She gad been unable to eat before being admitted!
Kim - we didn't get any results un Swindon, so don't know whatit was or if it was even tested!!
I wondered the same when I read that. It doesn't mention crohns but mimics some of its symptoms. It does say common examples of…so I assume the list wasn't meant to be complete.
The IgA of .74 g/L is only slightly low and wouldn't be IgA deficiency based on this article. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2821513/
"Immunoglobulin (Ig) A deficiency (OMIM 137100) is defined as decreased or absent level of serum IgA in the presence of normal serum levels of IgG and IgM in a patient older than 4 years of age, in whom other causes of hypogammaglobulinemia have been excluded [1, 2]. In general, serum IgA level of less than 7 mg/dL (0.07 g/L) is considered as selective IgA deficiency since this concentration is the lowest detectable limit established by most of the laboratories."
The article goes on to say:
When serum IgA level is higher than 7 mg/dL but two standard deviations below normal for age, the condition may be referred to as partial IgA deficiency, which is quite common.
"Immunoglobulin (Ig) A deficiency (OMIM 137100) is defined as decreased or absent level of serum IgA in the presence of normal serum levels of IgG and IgM in a patient older than 4 years of age, in whom other causes of hypogammaglobulinemia have been excluded [1, 2]. In general, serum IgA level of less than 7 mg/dL (0.07 g/L) is considered as selective IgA deficiency since this concentration is the lowest detectable limit established by most of the laboratories."
The article goes on to say:
When serum IgA level is higher than 7 mg/dL but two standard deviations below normal for age, the condition may be referred to as partial IgA deficiency, which is quite common.
- Location
- Hull England
Gud luck for tomorrow xx
hey niks just catching up not been on for w while . hope all hoes well today hun and u get some positive answes.xx
Good luck!!
Good luck!
Kimberly
Kimberly
UUURRRRGGGHH!! Just home! Waited just over an hour for appointment and then was in there for about an hour and 10 mins!
NOTHING conclusive! MRE all good, showed nothing! At least four tests that have been done in passed in Swindon have shown inflamation/ulceration! (I didn't know this!!) But nothing seen in Oxford. Could be due to being on Pred for so long.
Jaime had red itchy eyes today, he asked her about this, and looked. He asked her about mouth ulcers, she showed him some whoppers, and he asked her about bruising (some shiners on her legs), Jaime never used to bruise!!
He is uncertain what is causing her pain. Maybe constipation, maybe tethering, although this didn't look so bad on MRE, compared to CT scan.
Suggested to up laxatives, upping lactulose and adding sodium docusate and upping amitriptyline to 50mg for pain!
Making a follow up appointment for 6 weeks, but can call at any time with any concerns.
One very fed up Jaime. She just wants them to 'cut out' the bit that hurts so bad!!
NOTHING conclusive! MRE all good, showed nothing! At least four tests that have been done in passed in Swindon have shown inflamation/ulceration! (I didn't know this!!) But nothing seen in Oxford. Could be due to being on Pred for so long.
Jaime had red itchy eyes today, he asked her about this, and looked. He asked her about mouth ulcers, she showed him some whoppers, and he asked her about bruising (some shiners on her legs), Jaime never used to bruise!!
He is uncertain what is causing her pain. Maybe constipation, maybe tethering, although this didn't look so bad on MRE, compared to CT scan.
Suggested to up laxatives, upping lactulose and adding sodium docusate and upping amitriptyline to 50mg for pain!
Making a follow up appointment for 6 weeks, but can call at any time with any concerns.
One very fed up Jaime. She just wants them to 'cut out' the bit that hurts so bad!!