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CT scan - some thickening of proximal duodenum?
- Thread starter Niks
- Start date
- Location
- USA
But it would prove a blockage and hopefully show them something. Laprosope though would be better if you can get them to do it.
Niks-
Just caught up on all that has gone on. I'm sorry Jaime is in so much distress.
I hope you get some answers soon.
Hang in there. You are mighty strong to weather this storm.
Hugs.
Kimberly
Just caught up on all that has gone on. I'm sorry Jaime is in so much distress.
I hope you get some answers soon.Hang in there. You are mighty strong to weather this storm.
Hugs.
Kimberly
I hate the thought of her having to undergo surgery, yet they're finally offering something, a plan of action. If it is laparoscopic, it shouldn't be too awful.
I don't know. I think if she were my daughter, I would do it. It doesn't seem like there are many other options? And maybe if the doctor on the 21st hears about this, he might see you sooner?
What does Jaime think?
I don't know. I think if she were my daughter, I would do it. It doesn't seem like there are many other options? And maybe if the doctor on the 21st hears about this, he might see you sooner?
What does Jaime think?
That sounds like a good idea.
He was in Swindon! I think we need to go via Oxford. Will talk to them next week about what he said x
I tend to explore multiple avenues simultaneously, which is probably because I don't have a lot of faith in the medical system here.
If I was in your position I'd get a referral to the Swindon surgeon too and try to get that path moving so that if Oxford don't have a what next plan that your happy with you do have another path of exploration ticking along in background. (Cause everything takes so long!)
If your happy with the Oxford recommendation you can always cancel the appointment or defer it for later.
If I was in your position I'd get a referral to the Swindon surgeon too and try to get that path moving so that if Oxford don't have a what next plan that your happy with you do have another path of exploration ticking along in background. (Cause everything takes so long!)
If your happy with the Oxford recommendation you can always cancel the appointment or defer it for later.
Definitely worth having the laparoscopy - Amy had that done in December and it was quite a simple procedure. I am surprised with all the pain she is in that they haven't done one yet - surely they can't declare they don't know what it is if they haven't done all relevant tests!!! Crossing fingers and toes for you they get something organised.
Here's my favourite quote - "just because something isn't probable, doesn't mean it's not possible", just like my daughter's appendix causing severe pain in her bottom. If Jaime's pain isn't being caused by something obvious to them, they should be thinking out the box.
Here's my favourite quote - "just because something isn't probable, doesn't mean it's not possible", just like my daughter's appendix causing severe pain in her bottom. If Jaime's pain isn't being caused by something obvious to them, they should be thinking out the box.
Since testing and imaging have failed to yield any relief for her, I think having a look is an excellent idea! As always when I see a story like Jaime's, I am reminded of Dusty's Sarah! It's mind blowing what they can miss with the tests!! Good luck Niks!
Jeanne, her stomach is slow emptying (from failed barium meal) and yes they have said it is small bowel dysmotility as well.
Have just received a second letter from her old GI, the first one just basically lying and fobbing us off. This time saying that he is not prepared to share care with Oxford and after consideration it is 'probably best that Oxford take her under their wing and investigate and mange as they feel fit'!
I will be taking the letter with me to her appointment next week! I didn't think it was a very good idea either, and she certainly wouldn't want to ever see him!
I hate to think how Jaime is feeling right now, I am at breaking point
Have just received a second letter from her old GI, the first one just basically lying and fobbing us off. This time saying that he is not prepared to share care with Oxford and after consideration it is 'probably best that Oxford take her under their wing and investigate and mange as they feel fit'!
I will be taking the letter with me to her appointment next week! I didn't think it was a very good idea either, and she certainly wouldn't want to ever see him!
I hate to think how Jaime is feeling right now, I am at breaking point
Hi Niks,
I have been reading about Jamie and my heart goes out to you. I have experienced the NHS system in the UK which is where I call home, also the private health system in the USA and now here in Malaysia. You must be at your wits end ! The fact that the old GI doesn't want to share information makes me mad, but may be its a good thing as you don't want the old diagnosis to cloud any future decisions. Is there some one at the NHS trust or hospital social worker you could contact and explain how (desperate) you are ? I know your not desperate, you seem to be incredibly strong and have been really proactive but it wouldn't hurt to try and get some one else on your side. I hope you get things sorted out and can find some one to help fight in your corner.
Sending positive thoughts and good luck your way. Kill them with kindness, I found it always helped to look a little helpless.
X
I have been reading about Jamie and my heart goes out to you. I have experienced the NHS system in the UK which is where I call home, also the private health system in the USA and now here in Malaysia. You must be at your wits end ! The fact that the old GI doesn't want to share information makes me mad, but may be its a good thing as you don't want the old diagnosis to cloud any future decisions. Is there some one at the NHS trust or hospital social worker you could contact and explain how (desperate) you are ? I know your not desperate, you seem to be incredibly strong and have been really proactive but it wouldn't hurt to try and get some one else on your side. I hope you get things sorted out and can find some one to help fight in your corner.
Sending positive thoughts and good luck your way. Kill them with kindness, I found it always helped to look a little helpless.
X
DustyKat
Super Moderator
Hey Niks...:hug::hug::hug:
Yes, that was the point we reached with Sarah...surgery. Sarah's bloods finally did show she was septic the night before emergency surgery but that same weekend I spoke with the GP and Paediatrician over the phone and asked where we were going with all this and they both agreed that they may well have to "open her up".
I know an invasive procedure is never what we want but to me it can only be a win/win. If it shows nothing it offers a degree of piece of mind and you are no worse off. Of course if it does show something...
I know how you are feeling Niks and my thoughts are with you. :heart:
Dusty. xxx
Yes, that was the point we reached with Sarah...surgery. Sarah's bloods finally did show she was septic the night before emergency surgery but that same weekend I spoke with the GP and Paediatrician over the phone and asked where we were going with all this and they both agreed that they may well have to "open her up".
I know an invasive procedure is never what we want but to me it can only be a win/win. If it shows nothing it offers a degree of piece of mind and you are no worse off. Of course if it does show something...
I know how you are feeling Niks and my thoughts are with you. :heart:
Dusty. xxx
Niks-
If you pursue a formal complaint or legal action (I don't know how it works in your country), would that make Swindon "bar" you from going there? The good and bad with that idea. Good: They would have to stop referring you there. Bad: In a true emergency, you would be in a bad situation.
Kimberly
If you pursue a formal complaint or legal action (I don't know how it works in your country), would that make Swindon "bar" you from going there? The good and bad with that idea. Good: They would have to stop referring you there. Bad: In a true emergency, you would be in a bad situation.
Kimberly
After a day of tears and just total exhaustion from both of us yesterday. Jaime decided to go to her friends 18th birthday party last night.
Kept expecting a call, or her through the door! She lasted all night and got home just after 2am!! YAY :dance: She even had a couple of cocktails! (hasn't managed a drink at all since before Christmas)
Jaime said she vomited four times while out! For most people that would be a good reason to head home, but in her words 'I have to get on with it Mum, or I would just be housebound'! Very proud of her. Really hope that one day she doesn't have to accept this as normal!
Kept expecting a call, or her through the door! She lasted all night and got home just after 2am!! YAY :dance: She even had a couple of cocktails! (hasn't managed a drink at all since before Christmas)
Jaime said she vomited four times while out! For most people that would be a good reason to head home, but in her words 'I have to get on with it Mum, or I would just be housebound'! Very proud of her. Really hope that one day she doesn't have to accept this as normal!
xX_LittleMissValentine_Xx
Moderator
- Location
- Reading,
Oh its horrible. She really doesn't need this right now. I hope she doesn't get too depressed, she needs some hope and some feeling that life can get better.
She has just found out that the three boys are really close friends of her boyfriend. She is so grateful that he wasn't in that car!
One of them has a broken spine, another internal bleeding (not looking good), the last one more stable. I just hope for all of their families sakes that they all make it. Enough broken hearted people already
One of them has a broken spine, another internal bleeding (not looking good), the last one more stable. I just hope for all of their families sakes that they all make it. Enough broken hearted people already
- Location
- USA
OMG Niks! Praying for Jamie and the families of lost teens. Terrible!:ghug:She has just found out that two of the girls - both 19, who were at the party last night got killed in a car crash last night
Three boys 19 and 20 years old are critical. What is going on in this horrible world! Poor Jaime is obviously distraught
OMG Niks, I'm so sorry to hear that. Thank God Jaime wasn't in the car. Prayers said for Jaime and the families of the teens. ((((hugs))))
Hugs
WOW ! What a strong wonderful girl you have raised.
X
X
CarolinAlaska
Holding It Together
Niks, all of this is tragic, from your daughter's symptoms and lack of treatment, to her having to "stick it out" while trying to enjoy a friend's party, to the death of other friends. No wonder she is sad.
I am totally in support of that laparoscopy surgery!
I am totally in support of that laparoscopy surgery!
Jaime has just announced that she did a largish soft BM this morning! OMG! This is a first for a very long time! All this stress is obviously getting her bowels going!
Confusing though, she has done nothing different! (Apart from sneak a piece of normal and not gluten free pizza yesterday?!) HMMMM!!!!
Confusing though, she has done nothing different! (Apart from sneak a piece of normal and not gluten free pizza yesterday?!) HMMMM!!!!
- Location
- North East Coast - USA
Hey Niks... Just checking in... :hugs:
more :hug:
CarolinAlaska
Holding It Together
Glad to hear it about the poo! I hope it becomes a regular habit!
- Location
- USA
Maybe she oughta cheat a little more often!!!
Niks
I thought she was on all formula until they figured out her issues????
I really can't imagine eating solids when nothing is moving through ???
I thought she was on all formula until they figured out her issues????
I really can't imagine eating solids when nothing is moving through ???
Just a thought has she tried all formula for a week or so?
No food
I only ask because when DS had issues when he was first dx
Total EEN made everything liquid.
This was a kid who needed miralax daily for over a year.
Gluten free is very constipating for a normal gut.
May be something to ask her Gi
No food
I only ask because when DS had issues when he was first dx
Total EEN made everything liquid.
This was a kid who needed miralax daily for over a year.
Gluten free is very constipating for a normal gut.
May be something to ask her Gi
I mean at this point nothing else has worked .
Personally if it were my kiddo ( who is you get so I still get a say mind you )
I would want semi elemental to help get her body healthy and take the digestion stress off her system for a bit .
Personally if it were my kiddo ( who is you get so I still get a say mind you )
I would want semi elemental to help get her body healthy and take the digestion stress off her system for a bit .
- Location
- USA
Hope you get your answer Niks and Jamie! Praying for you!:ghug:
Sending good thoughts your way today! I hope you get a plan you can believe in.
Hugs
Kimberly
Hugs
Kimberly
CarolinAlaska
Holding It Together
I don't agree. Gluten free diet is relieving for my constipated girls and takes away the diarrhea for Jaedyn and I... FWIW
I do agree with the EEN - small amounts, slowly, around the clock (yep, gonna take a lot of convincing!)
By the way, since when does constipation/motility issue cause thickening of proximal duodenum?
Liam's Pediatric GI who I don't have high level of trust in said that Liam had got worse because I'd added Ensure and reduced fibre which is a totally wrong approach for kids with motility issues.
I'm not convinced but pulling the Ensure and readding wheatbix, which Liam love's but gives him bad pain (about 30 min - 1 hour after he eats) seems to have fixed the constipation. Liam is looking and feeling much better.
I don't understand the diet connection stuff at all, its a total mystery to me. Feels like every time I try to make a change I make things worse.
I'm not convinced but pulling the Ensure and readding wheatbix, which Liam love's but gives him bad pain (about 30 min - 1 hour after he eats) seems to have fixed the constipation. Liam is looking and feeling much better.
I don't understand the diet connection stuff at all, its a total mystery to me. Feels like every time I try to make a change I make things worse.
It is so hard to know what to do! Jaime can't have gluten because of the coeliac diagnosis (although Oxford are not convinced of this, but have told her to stick with it for now). So at the moment not much say on that one.
She has been told to stay strictly low fibre. 6-8 small meals a day and 3 top up fortisip compact. They are coming back up at the moment though.
My concern with EEN is, if it isn't just her stomach that's not emptying and is her bowels not pushing through, where is it going to go! At the moment if it is stuck in her stomach it will come back up. Mind you, after vomiting faeces, I guess it can still come back up!
So confused. I have everything crossed for this afternoon and have a list of questions!
Thanks for all your wishes xx
She has been told to stay strictly low fibre. 6-8 small meals a day and 3 top up fortisip compact. They are coming back up at the moment though.
My concern with EEN is, if it isn't just her stomach that's not emptying and is her bowels not pushing through, where is it going to go! At the moment if it is stuck in her stomach it will come back up. Mind you, after vomiting faeces, I guess it can still come back up!
So confused. I have everything crossed for this afternoon and have a list of questions!
Thanks for all your wishes xx
- Location
- USA
Plz let us know asap when you get home what Dr. says. Thanx!!!!:ghug:Sending love and support and prayers for Jamie:heart:
I just don't know what to think!
They are convinced that she does not need more tests. Her symptoms are clear enough for them to diagnose bowel dysmotility. He did say intestinal pseudo-obstruction is why her bowels block without an actual obstruction. They couldn't answer me as to why Pred worked initially, and why she has had inflammation in the past. Or why she had bloody mucussy diarrhea initially.
They have told her not to take morphine and tramadol, have taken amitriptyline away and replaced with Gabapenin. She is also to take citramag daily!!!! He assured me it will do her no harm and will clear her out, and help with the vomiting.
We were almost 2 hours late going in and in there for 2 hours!! What ever I said, they just basically said that it is a really difficult condition to treat. I KNOW!!!! :ybatty:
Not happy! GRRRRRRR
They are convinced that she does not need more tests. Her symptoms are clear enough for them to diagnose bowel dysmotility. He did say intestinal pseudo-obstruction is why her bowels block without an actual obstruction. They couldn't answer me as to why Pred worked initially, and why she has had inflammation in the past. Or why she had bloody mucussy diarrhea initially.
They have told her not to take morphine and tramadol, have taken amitriptyline away and replaced with Gabapenin. She is also to take citramag daily!!!! He assured me it will do her no harm and will clear her out, and help with the vomiting.
We were almost 2 hours late going in and in there for 2 hours!! What ever I said, they just basically said that it is a really difficult condition to treat. I KNOW!!!! :ybatty:
Not happy! GRRRRRRR
- Location
- USA
How frustrating!!!!I guess all you can do is hope the citrimag works and gets things moving through. I really hope it works for her. Sorry it didn't go better for you both!:ghug:
What a long day!
I have some questions ...
Do they think their medication removal/suggestions should make her feel much better and allow her to eat enough?
How long did they want Jaime to try this plan?
When is your next follow up?
Did they say what would be the next option if this plan does not work? (and she feels awful and is losing weight)
Did they take any blood tests to ensure electrolytes/nutritional status is adequate?
I hope their suggestions help and Jaime feels better!!!!
I have some questions ...
Do they think their medication removal/suggestions should make her feel much better and allow her to eat enough?
How long did they want Jaime to try this plan?
When is your next follow up?
Did they say what would be the next option if this plan does not work? (and she feels awful and is losing weight)
Did they take any blood tests to ensure electrolytes/nutritional status is adequate?
I hope their suggestions help and Jaime feels better!!!!
Jeanne - I had these questions too!!
The drugs they are removing are pain relievers and can be really constipating! So they are hoping that she will improve without them. However I did point out that she wasn't on these drugs when all her problems started and how on earth is she supposed to manage the pain when she can't even stand up and is passing out! The answer to this was just sympathetic noises! GRRRR
She has to try this for 4 - 6 weeks when her next appointment will be. I am not happy about her taking colon prep daily for that long!! Seems crazy! Again they said we need to give it time to see if it will work for her. They did not say what the next option will be. I seriously don't think they have one! Have been advised to keep in contact with dietician.
No bloods taken!!! Just x-ray, to double check no obstruction. (we left before this was reviewed though, sure it just showed how backed up she is!)
Thank you, I really hope she feels better too, not holding my breath! xx
The drugs they are removing are pain relievers and can be really constipating! So they are hoping that she will improve without them. However I did point out that she wasn't on these drugs when all her problems started and how on earth is she supposed to manage the pain when she can't even stand up and is passing out! The answer to this was just sympathetic noises! GRRRR
She has to try this for 4 - 6 weeks when her next appointment will be. I am not happy about her taking colon prep daily for that long!! Seems crazy! Again they said we need to give it time to see if it will work for her. They did not say what the next option will be. I seriously don't think they have one! Have been advised to keep in contact with dietician.
No bloods taken!!! Just x-ray, to double check no obstruction. (we left before this was reviewed though, sure it just showed how backed up she is!)
Thank you, I really hope she feels better too, not holding my breath! xx
- Location
- North East Coast - USA
UGH!! Nik's... How frustrating!!! No bloodwork?! What the heck?? Wish you would have gotten more answers... I pray the meds clear J out that she can eat (and enjoy it!)... How she manages not to say forget this and eat anything knowing it's coming up any ways, it's amazing...
What did they say about MLP's idea about EEN?
((((hugs)))) to you both!
What did they say about MLP's idea about EEN?
((((hugs)))) to you both!
Glad to hear they switched to Gabapentin
- it can help with a few things.
As far as constipating - even if she wasnt taking them at the beginning
they may be making things worse kwim.
dont think of it as 6 weeks - think of it as today-
just for today - see how it goes-
then rinse repeat.
not ideal
but i have found in GI land NOTHING is less than 4-6 weeks
since it always takes that long to see an improvement.
a long time is 6 months.
not the best but ....
- it can help with a few things.
As far as constipating - even if she wasnt taking them at the beginning
they may be making things worse kwim.
dont think of it as 6 weeks - think of it as today-
just for today - see how it goes-
then rinse repeat.
not ideal
but i have found in GI land NOTHING is less than 4-6 weeks
since it always takes that long to see an improvement.
a long time is 6 months.
not the best but ....
Also hoping the Gabapentin will help, I've taken this in the past and as I did have a condition it was effective against. The relief was virtually instantaneous. My understanding of this drug is it doesn't build up in your system, so if it's going to work you should know this within a few days.
Niks I think this might be another reason to try to get her a referral to a pain clinic. Her pain has been severe enough for long enough to warrant it and if her pain killer options are restricted because a lot of the options make her condition worse, I think that justifies needing to get a Pain Management Specialist involved.
Hopefully removing the other pain killers will help get her stomach working again.
Niks I think this might be another reason to try to get her a referral to a pain clinic. Her pain has been severe enough for long enough to warrant it and if her pain killer options are restricted because a lot of the options make her condition worse, I think that justifies needing to get a Pain Management Specialist involved.
Hopefully removing the other pain killers will help get her stomach working again.
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Thanks guys! MLP and Maree, I'm glad you think the Gabapentin will help! I had never heard of it. And I guess you're right, 4-6 weeks isn't so long in the big scheme of things.
We did discuss pain clinic, but they are going to leave it until the next clinic and see how she is. I really think they are hoping that giving her citramag daily (or if too much every other day) and cutting the pain relief will help. I am doubtful, but hoping!
We discussed EN and EEN, because she has managed to gain a few pounds in the last 6 weeks (2.2 kg) they are going to leave it for now. Again I did tell them that she had gained more than than initially, but is now loosing again! I guess if we can get things moving through her then the vomiting will stop again. So fingers crossed! She has to remain on 6-8 small low residue meals a day. I don't think she's ever managed anywhere near that, but at least it's something to aim for!
We did discuss pain clinic, but they are going to leave it until the next clinic and see how she is. I really think they are hoping that giving her citramag daily (or if too much every other day) and cutting the pain relief will help. I am doubtful, but hoping!
We discussed EN and EEN, because she has managed to gain a few pounds in the last 6 weeks (2.2 kg) they are going to leave it for now. Again I did tell them that she had gained more than than initially, but is now loosing again! I guess if we can get things moving through her then the vomiting will stop again. So fingers crossed! She has to remain on 6-8 small low residue meals a day. I don't think she's ever managed anywhere near that, but at least it's something to aim for!
Niks, most pain medications are really bad news for long term use from a health perspective.
pain -- painkiller -- painkiller side effect -- more pain -- higher dose painkiller cycle is a really nasty one, and trying to break out of it is a good thing.
Gabapentin is an anti convulscent style pain killer it can be very effective in treating pain particularly if there is a nerve related aspect to the pain, eg: Fibromyalgia. It doesn't work for all patient but definitely worth a try to see if it helps.
Pregablin is another drug in the same family which has a much longer effectiveness window, so worth discussing with your doctors if you find Gabapentin does help but the impact is regularly wearing off before the next dose is due.
pain -- painkiller -- painkiller side effect -- more pain -- higher dose painkiller cycle is a really nasty one, and trying to break out of it is a good thing.
Gabapentin is an anti convulscent style pain killer it can be very effective in treating pain particularly if there is a nerve related aspect to the pain, eg: Fibromyalgia. It doesn't work for all patient but definitely worth a try to see if it helps.
Pregablin is another drug in the same family which has a much longer effectiveness window, so worth discussing with your doctors if you find Gabapentin does help but the impact is regularly wearing off before the next dose is due.
Hi Niks,
I have been MIA here this past week, so am just catching up. It is so frustrating to hear they are still really not doing anything for your poor girl. I dont know how they can diagnose dysmotility with out doing the proper testing. I met someone on Sunday whose son has this disorder and had a very thorough workup done. His Mom tried to get him into the cincinatti clinic but ended up taking him to wisconsin where they did a lot of testing. I think it is ridiculous for these doctors to diagnose like this. I am so frustrated for you guys.
I spoke with friend of mine who is an anesthesilogist. He wanted to know if anyone talked with you about trying Erthromycin for increasing gastric motility. I have an article for you. I tried to find one that was not to medical to understand but had a hard time finding one. This was the best one I found.
Here it is:
http://jac.oxfordjournals.org/content/59/3/347.full
I have been MIA here this past week, so am just catching up. It is so frustrating to hear they are still really not doing anything for your poor girl. I dont know how they can diagnose dysmotility with out doing the proper testing. I met someone on Sunday whose son has this disorder and had a very thorough workup done. His Mom tried to get him into the cincinatti clinic but ended up taking him to wisconsin where they did a lot of testing. I think it is ridiculous for these doctors to diagnose like this. I am so frustrated for you guys.
I spoke with friend of mine who is an anesthesilogist. He wanted to know if anyone talked with you about trying Erthromycin for increasing gastric motility. I have an article for you. I tried to find one that was not to medical to understand but had a hard time finding one. This was the best one I found.
Here it is:
http://jac.oxfordjournals.org/content/59/3/347.full
Thanks Kim
Actually last time she was admitted over night in Oxford they did suggest this. (I had completely forgotten!). I am just really confused why they didn't suggest this
We ended up seeing a couple of people on Tuesday, as I was upset and wasn't really getting questions answered, so the GI that we saw went and got back up!!
I am going to go through absolutely everything. Procedures, admittances, results, symptoms - what has been discussed with other Doctors and e-mail everything in a date and factual order through to the Consultant who eventually came to see us. I think when you are pretty emotional and face to face, things get confusing. So many things have happened and changed over the last 10 months! And even years ago when things started. Going to go right back!
I don't know whether it will help, but maybe if it is written down in black and white in a factual and not emotional way, he may be able to work through it!
Here's hoping
Actually last time she was admitted over night in Oxford they did suggest this. (I had completely forgotten!). I am just really confused why they didn't suggest this
We ended up seeing a couple of people on Tuesday, as I was upset and wasn't really getting questions answered, so the GI that we saw went and got back up!!
I am going to go through absolutely everything. Procedures, admittances, results, symptoms - what has been discussed with other Doctors and e-mail everything in a date and factual order through to the Consultant who eventually came to see us. I think when you are pretty emotional and face to face, things get confusing. So many things have happened and changed over the last 10 months! And even years ago when things started. Going to go right back!
I don't know whether it will help, but maybe if it is written down in black and white in a factual and not emotional way, he may be able to work through it!
Here's hoping
After going through everything that has happened with J and basically going through everything on here! So glad I updated her symptoms etc, because it is so easy to forget things. Right up until February, she was having bloody mucousy stools! This is not dysmotility! It seems that the Gastro team are basing this on her MRE being clear.
I still think that being on varying strengths of steroids for 6 months is the reason for there being no inflammation! I really hope that they get to look at my e-mail, her overall symptoms and take it seriously!
I still think that being on varying strengths of steroids for 6 months is the reason for there being no inflammation! I really hope that they get to look at my e-mail, her overall symptoms and take it seriously!
- Location
- USA
I agree with you too. I still wished they'd do the pillcam just to be safe. I swear they save it for absolutely last like it cost's a million dollars!
Niks
I think that was a great idea.you are right sometimes it takes things being on black and white for them to wake up and pay attention.I know as a nurse practitioner seeing things on black and white always helped me. what exactly is a consultant, what is their job? I am wondering if it is like a social worker?
I think that was a great idea.you are right sometimes it takes things being on black and white for them to wake up and pay attention.I know as a nurse practitioner seeing things on black and white always helped me. what exactly is a consultant, what is their job? I am wondering if it is like a social worker?
Kim the Gastroenterology Consultant is basically the top Gastroenterology Guy who was at clinic on Tuesday! There are several of them at Oxford, we have never seen this one! I really think this doesn't help. Having to go through everything is exhausting and very frustrating, and yet they only seem to hear what is happening NOW! :ybatty:
When the original Doctor went out to get him, Jaime told me to calm down and not be angry with him as it wasn't his fault. No I guess it wasn't but my goodness, why do they give her yet another Doctor to review her!?
When the original Doctor went out to get him, Jaime told me to calm down and not be angry with him as it wasn't his fault. No I guess it wasn't but my goodness, why do they give her yet another Doctor to review her!?
- Location
- USA
Because they are clueless and don't know what to do!:ymad:
ok do consultant means doctor there. is their someone life
a case manner or advocate who could help? also I was thinning call the crohns and colitis foundation of UK. maybe they could help be an advocate for her.it seems to me she needs someone to fight for her that has experience with battling your medical system.
a case manner or advocate who could help? also I was thinning call the crohns and colitis foundation of UK. maybe they could help be an advocate for her.it seems to me she needs someone to fight for her that has experience with battling your medical system.
Yes Consultant is just a top Doctor in that field! I don't know! It's tricky because she was originally 'thought' to have crohn's and it is now on her medical records that she does! Now though, they say she doesn't have an IBD!
I am going to see if I get a reply from the e-mail. If I don't I may contact Crohn's and Colitis Foundation to see if they have any advise or ideas. Thank you, that is a good idea!
xx
I am going to see if I get a reply from the e-mail. If I don't I may contact Crohn's and Colitis Foundation to see if they have any advise or ideas. Thank you, that is a good idea!
xx
- Location
- USA
Niks, I was diagnosed with crohn's in 2011,had ulcers in ileum and colon. Now last catscan, no ulcers, so he is calling it IBS! Can crohn's change to IBS? I never thought so!
- Location
- USA
I thought so too. But this Dr. isn't the one who diagnosed me. So, it's like you said. They forget everything that happened in the past and just go by what they see now, which is BS!
So what meds are you on? Is he stopping them? :eek2:
732crossroads
that is just ridiculous.that sounds like you are in remission. have you thought about a second opinion or a new doctor?
that is just ridiculous.that sounds like you are in remission. have you thought about a second opinion or a new doctor?
Hey, thought I'd update quickly on Jaime! It has taken a whole week of every other day citramag, but finally things happening and now doing what it should! She also vomited bright green bile! But hey, hopefully that will now settle as it's moving in the right direction.
Hopefully her vomiting will settle now. I just don't know how long it is good to do this for!
Hopefully her vomiting will settle now. I just don't know how long it is good to do this for!
GI things take a long time so what may seem like forever may not be needed in a few months or a year or two.
DS had to have a capful or more of miralax every day for two years.
he has gone over 8 months without any.
we are only using it now to keep his prolapse from getting worse.
hope it continues.
getting something that works is key-
at least for us
we worry about side effects after we get things under control for a while.
since the current situation is not acceptable KWIM
DS had to have a capful or more of miralax every day for two years.
he has gone over 8 months without any.
we are only using it now to keep his prolapse from getting worse.
hope it continues.
getting something that works is key-
at least for us
we worry about side effects after we get things under control for a while.
since the current situation is not acceptable KWIM
- Location
- USA
Really hoping things get better and better. I don't understand the bile coming up, that still seems like something is wrong to me. But, I'm not a Dr. Praying now it gets better and better!:ghug:
CarolinAlaska
Holding It Together
Hi Niks, I'm so sorry the GI appt didn't go successfully. I am hoping and praying that their treatment gets her bowels moving to such a point that it takes the dysmobility out of the picture enough to find the real source of the problem. Do they still have her on an antinausea med? Could you list all the meds she is currently on? Jaedyn gets good abdominal pain relief from an essential oil blend called "DigestZen" from DoTerra. Do you have anything like that over there to help with the pain? Did they take Jamie off her morphine cold turkey after all those months of using it, or did they wean her? That alone would make her sick and vomiting worse! Fortunately, people don't usually die from withdrawals, but their life is hell until they get through it. Is she having any other symptoms of withdrawal? I agree with getting her off of the morphine. It is very bad stuff and only will give her a life of misery. I pray she will find a way to get away from her pain and that she won't have any long-term effects from what the morphine could already have done to her system. The morphine itself could be painting the whole dysmotility syndrome alone. I know it is unfathomable to consider living without it, but you have to understand how bad that stuff is on your little girl.
Praying that Jamie's symptoms will start settling down and that she will find healing and optimal GI function in a pain-free life. Sorry I've been MIA too.
Praying that Jamie's symptoms will start settling down and that she will find healing and optimal GI function in a pain-free life. Sorry I've been MIA too.
Hey Carol
Jaime was only taking the morphine occasionally. Mainly at work if she really couldn't bear it, so she hasn't suffered with coming off it. You are right, it could be masking other things!
She takes:
Metoclopramide X 3 times daily
Gabapentin 300mg x 3 times daily
Buscopan x 3 times daily
Citramag daily (has been taking this every other day)
Sodium Docusate (lunctime and bedtime)
Magnesium Hydroxide 45mg at bedtime
Since starting Gabapentin she says she feels really 'spaced out', with some visual disturbances! Since I emailed the Doctor she saw, his secretary rang her and said if there are any problems to call her directly and she will get hold of him. She is going to ask her about this side effect, she finds it really hard to concentrate. Do you think this could be stopping the Oramorph or starting Gabapentin?
Jaime was only taking the morphine occasionally. Mainly at work if she really couldn't bear it, so she hasn't suffered with coming off it. You are right, it could be masking other things!
She takes:
Metoclopramide X 3 times daily
Gabapentin 300mg x 3 times daily
Buscopan x 3 times daily
Citramag daily (has been taking this every other day)
Sodium Docusate (lunctime and bedtime)
Magnesium Hydroxide 45mg at bedtime
Since starting Gabapentin she says she feels really 'spaced out', with some visual disturbances! Since I emailed the Doctor she saw, his secretary rang her and said if there are any problems to call her directly and she will get hold of him. She is going to ask her about this side effect, she finds it really hard to concentrate. Do you think this could be stopping the Oramorph or starting Gabapentin?
CarolinAlaska
Holding It Together
Probably the gabapentin, if she wasn't taking oramorph on a daily basis. Usually I try to start gabapentin a little slower and work up to the full dose due to side effects like these. I would suggest she ask her doc if she can have a plan to work up to this dose...
Agree sound like classic Gabapentin symptoms. For me it really slowed down reaction times and the pace at which I could think (driving really wasn't an option while taking it). It also made me incredibly clumsy and I'd wake feeling like I had a really severe hangover but it was amazingly effective for pain.
Niks,
Thanks for the update was thinking about you guys. I am really hoping you guys get some answers finally. Keep us posted. Sending hugs to both of you!
Thanks for the update was thinking about you guys. I am really hoping you guys get some answers finally. Keep us posted. Sending hugs to both of you!
Hmm, that's exactly what she said this morning! She said she felt like she had a really bad hangover. She was out with friends last night, but ended up coming back early because she was so sick, dizzy and she passed out. She only drank soft drinks, but thought that someone had spiked her drink!
I am just glad that after a week of very small rabbit like BM's that the Citramag is finally working. Goodness only knows what she will need to take if she ever needs to have a colonoscopy!
I am just glad that after a week of very small rabbit like BM's that the Citramag is finally working. Goodness only knows what she will need to take if she ever needs to have a colonoscopy!
- Location
- USA
My Gastro put me on a med for pain and gas etc... Can't remember the name and I am staying at my sister's dogsitting. So I can't go look. But it sent me into spins when I laid down and got so sick. We were on a weekend vacation and I ended up in the bathroom half the night vomiting and so sick from it. Nice of the Dr. to tell me of these possible side effects. Even the next day, I still was sick and barely made it to go to a restaurant and threw up before we went inside. I was so embarrassed because it was also a bar and everyone probably thought I was drunk!!!
I remember now, it was hyocyamine. Ever hear of it???
They also put me on Tramadol and couldn't take that or Neurontin for fybro pain. I am sensitive to drugs. Very sensitive!
I remember now, it was hyocyamine. Ever hear of it???
They also put me on Tramadol and couldn't take that or Neurontin for fybro pain. I am sensitive to drugs. Very sensitive!
- Location
- USA
She is on neurontin then right? That is what it is called here. I felt like I was outside of my body when I took that and so weird! Had to stop. Hyocyamine was the one that made me so dizzy and sick.
Because I was taking Gabapentin for neuropathic pain the doses we're much higher, but the side effects your both describing sound very familiar. Does she think it is helping with the pain?
FYI My understanding is it's important to not have too big a gap between your evening and morning doses, so should be last thing at night and first thing when you wake. (It wasn't a problem I had as I took it 4 hrly, 6 times a day.
FYI My understanding is it's important to not have too big a gap between your evening and morning doses, so should be last thing at night and first thing when you wake. (It wasn't a problem I had as I took it 4 hrly, 6 times a day.
I'm not sure how long I'd persist with it if its not working before going back to your doctor and discussing alternatives. There are only a limited set of sorts of pain it works for and this may simply not be one of them.
I never got 4 hour effective windows with gabapentin, even with max doses (more like 2 hrs) but when it did kick in, it was like flicking a shut off switch for the pain. If she's not noticing a marked difference with it I'd think the side effects wouldn't be worth it.
I never got 4 hour effective windows with gabapentin, even with max doses (more like 2 hrs) but when it did kick in, it was like flicking a shut off switch for the pain. If she's not noticing a marked difference with it I'd think the side effects wouldn't be worth it.
Another question!
Is it possible that Gabapentin could cause Lockjaw like symptoms? She is complaining that her jaw hurts so much and is finding it hard to try and eat anything. She has no reason for this to happen, no injury!? She is really drowsy tonight, very pale, can barely open her eyes. says things keep moving. Really don't like these side effects at all! :eek2:
Is it possible that Gabapentin could cause Lockjaw like symptoms? She is complaining that her jaw hurts so much and is finding it hard to try and eat anything. She has no reason for this to happen, no injury!? She is really drowsy tonight, very pale, can barely open her eyes. says things keep moving. Really don't like these side effects at all! :eek2:
I once had a neuralgia from an infected tooth, after two shots of dilaudid, 3 or 4 percocet and no relief from the pain which was so bad I would pass out, the ER doc gave me neurontin, it stopped the pain where the other meds wouldn't touch it but probably due to the fact that it was from a neuralgia.
I would definitely get in touch with the docs about the jaw pain. I know neurontin is used for things like trigeminal neuralgia which involves the nerves in the jaw, cheek, teeth, gums etc so not sure what the connection would be but I the docs have some answers, poor thing has been through so much!
I would definitely get in touch with the docs about the jaw pain. I know neurontin is used for things like trigeminal neuralgia which involves the nerves in the jaw, cheek, teeth, gums etc so not sure what the connection would be but I the docs have some answers, poor thing has been through so much!
Good idea to see the gp but everyone is different
She may need to up the dose slowly.
DS takes hydrocyamine alot - no real issues unless its combined with zofran.
For DS only a Neuro would prescribe gabopentin - even the Gi wouldn't touch it
Since they don't have to deal with the drug often.
Hope the gp can help
She may need to up the dose slowly.
DS takes hydrocyamine alot - no real issues unless its combined with zofran.
For DS only a Neuro would prescribe gabopentin - even the Gi wouldn't touch it
Since they don't have to deal with the drug often.
Hope the gp can help
- Location
- USA
I would still get her to the Dr.s as soon as possible. She sounds really bad and dehydrated!:blush: