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Oh, I'm so sorry you have so much going on right now! I know how horrible and overwhelming it can be!

I hope the GI can get you something for Amy's pain :( Poor thing!!! I feel so badly for her. And am hoping you get the MRI results soon so you can move onto diagnosis/treatment!

And am also sorry you have still having problems with your mom! Again, I hope you are able to move things along...

And hope Andrew's cold passes very quickly!!!

Try to just take things one at a time, I'm finding that's the only way I'm coping now... deal with one problem at a time and really try to put the concerns of the other issues aside the others until you have time to deal with it. I literally make lists of what I need to do (phone calls, etc.) and just focus on one item at a time... I still sometimes feel totally overwhelmed but... I try to just get back to my To Do list and focus on that.

Lots of hugs... :ghug: :ghug:
 
Thanks! Muppet - no diagnosis as yet - so far the MRI is the only test done and that was only after I broke down crying and begged. The paediatrician was going to send us away with no tests/referrals. So far the Melatonin and TENS are the only things given and they're not working!
Tess - lists are definately the way to go - I put everything in my phone so it pops up and reminds me!
 
Well, the MRI results are in ..... and ..... there's nothing showing up! Good in one way but still no further forward to getting diagnosis and/or treatment.
They are going to be sooo reluctant to do more. Am I being a bad parent wanting my child to go through further testing? I feel like I should give up and just try find a pain med that works :(
 
Don't give up!
Take a day or two to recoup and then back to it.
We know from others here the the road can be tough to figure out.
But no matter what her dx might be, you will figure it out.


HUGS
 
Do not give up. You are not a bad Mom for wanting more testing! What about a scope has she had one? (I can't remember offhand)
 
Wow, sorry you have no answers atm. I agree with the others that you should try and rest and regroup - then keep testing till you get some answers! Pain is an indicator of something going on and there are many on this forum that have taken a long time to get a proper diagnosis. I know that it must be so frustrating though, especially seeing Amy in pain and not getting enough sleep. You are certainly going through a lot atm, how is your mum doing today, any better news?? xx
 
:ghug::ghug::ghug::ghug:
don't give up, her not sleeping because of pain is not right and you need to find out why - sending big hugs xxxx
 
Thanks guys :ybiggrin:. Amy has an appointment today at 11.30am - I wonder what the paediatrician will say. The lovely IBD nurse said she will come up and see her as well.
Kim - Amy had a colonoscopy when she was 5 yrs old (she is now 10) but even then she never had any prep to clear her out - she just didn't eat after midnight the night before. The only test they have done since this started bad in June is the MRI :yrolleyes:.
My mother is not doing so well either. Her legs/back are so bad that she needs help going to the toilet/showering. The neurosurgeons have said "an operation is not indicated" (although no one actually examined her) so we are trying to get a second opinion. They can only see her on 13th December so she is stuck in a hospital bed for the next two weeks with no tests/treatments.
Andrew is also off school with a cough and a bad pain around his right scapula and ribs which I am assuming is a pulled muscle.
Life sucks :ylol::ylol::ylol::ylol:, slightly hysterical :ybatty:
 
:ghug::ghug::ghug::ghug:
OMG Sascot - I think you will need a large glass of wine tonight! I would drop one over and join you but Southampton is a little far!! I hope things improve soon xxxx
 
Well, that went "not too bad". The poor guy - think he just wishes we would go away so he didn't have to deal with it all.
Yes - the tears came out as he was going to send Amy away with nothing AGAIN! I said no way!! He paged the pain clinic guy and spoke to him - he is determined that she see the surgeon before changing any pain meds (mmm, what meds?). When asked when he thought that would be - it could be a up to a month :ywow:. So I broke down again ;), and begged him to do something. He said to try dihydrocodeine 3 times a day with the paracetamol until Monday and if it doesn't work then he will go out on a limb and maybe give something like Amatrypteline. Apparently if he was in his own country it wouldn't be a problem giving something stronger, but there are so many rules and regulations in the UK that he is scared of getting into trouble.
Suzysu - we are leaving for our cruise from Southampton next year - maybe we could meet up for that drink!! :ysmile:
 
Sascot,
Just wanted to Sedna hugandsaythinkingof you guys. Maybe she does need another colonoscopy. Or how about a pill camera?
 
Those regulations are there for good reasons but it's frustrating when goal displacement like this is the result. :-(

You said you had an MRI and it showed nothing. What about occult blood? I assume they'd have done that by now. How frustrating and awful. That's a terrible spot to be in pain and have no explanation for it. Please keep us updated and don't let up on those doctors!!!
 
I'm so sorry! I wish you'd gotten SOME clue as to what's going on! :(

The pillcam would be a good idea (just make sure she has a 'dummy' pillcam first). Everyone's right, the pain is indicating that something is not right! You have to keep testing and the doctors should know that! :ybatty: If they ever try to tell you that there's nothing more they can do, ask them straight out if, in all honesty, if this was their daughter or niece, what would they be doing and would they be giving the same advice?

I'm so sorry you have so much to worry about now! Thinking of you! :ghug:
 
I will put a couple of bottles by!! in the mean time have a large glass now - I think you deserve\need it!! ;)
 
I do the same Tess. I always ask would he be happy with how things are or what the GI would do if it were his child.

Don't give up Sascot! Pain isn't normal and unfortunately, nobody cares about or will fight for our kids like we do. Don't feel bad about the tears either. Sometimes that's the only way to let the Drs know we are at the end of our ropes and they need to take action. (Another way involves personal injury and won't get us anywhere, so the tears are better :wink: )

Sorry that it is raining cats and dogs for you with Amy and your Mom! I hope things get straightened out soon.
 
Party moved to Southampton!

So sorry you are going through all this. You are an awesome mom for fighting and searching as hard as you are. I know giving up isn't truly in your vocabulary. I would take pain meds that they offer but really that isn't a solution either. They NEED to find the source.

:ghug::ghug::ghug:
 
hugs- we tried the amnitrpyline as well-at one point since they thought is was just "extra" functional pain in addition to IBD.
for ds is nothing. but worth a shot.
good luck with the docs.
 
I hope the pain meds works but I do hope they get to the source of all this, I know it is wearing on you and it is so hard to see your child in pain!! Sending support and hugs your way, Sascot!!
 
Sascot,
Caitlyn is on amitryptalline I think it helps somewhat with the pain but my issue with them putting your daughter on it. is how can you medicate pain that you have not figured out what is causing the pain? that is simply ridiculous in my book. They need to find out what is causing the pain. Keep fighting and know you have all our support behind you!
 
Oh my goodness Sascot, what an awful time you and your family are having...:hug:

I hope Amy is soon to find solid answers and lasting relief and Andrew is able to shake off his cold and muscle pain ASAP! :ghug:

And your poor Mum...what a difficult and frustrating time for you both. :(

Sending loads and loads of love, luck and healing thoughts your way...:Karl:

Dusty. xxx
 
Sending you BIG (((((hugs)))))) Sascot. Keep pushing those docs. Eventually you will find one that will help. Watching our kids in pain over and over is more horrible then words can describe. I know, all too well, that sinking feeling when test results come back normal but the pain is still ever present.

People who know me in "real life" won't believe what I am about to ask you... Have you tried any sort of natural remedies? I say this as someone who is openly hostile towards naturopaths. However, when you get desperate you get desperate. My son has had tremendous reduction in his pain frequency after we started supplementing with a probiotic and vitamin B2. It was our paediatrician who recommended the B2 supplement due to a couple of studies that suggest that it can reduce the frequency of migraine headaches. There is a connection between functional abdominal pain and migraine headaches so the paediatrician thought it was worth a try. Here is the best summary I have found on vitamin B2 and at the end there are the references to the scientific studies. http://www.nlm.nih.gov/medlineplus/druginfo/natural/957.html

If none of this is helpful just ignore me. I know it doesn't quite match what your daughter is experiencing but I know that I always felt better if I felt like I was trying something so I thought I would throw it out there.
 
Our Neuro also recommended b2 and riboflavin combo for DS ( 2 birds one stone) abdominal migraine and true migraine.
His of course turned out to be all Ibd related so we didn't go there but still.
 
Catching up on threads and wishing you some relief...what an awful time you have been having. :( I agree about the pain meds...I'd like to know the etiology of the pain before treating it.
 
It's me again :redface:. Waiting for you all to get fed up with me ;)
Couple of quick questions! Amy is bad as usual, she is a bit constipated tonight - probably all the dihydracodeine, even though I increased her Movicol today. She says it is sore "when she has finished pushing it out" but not when actually doing the poo (aah, a lovely conversation again). Any ideas why this might be?
Also Andrew is coughing again with a stuffy nose :( - this is the 3rd time in 2 months. I am concerned that his Crohns will be rearing it's head since he's not on meds. Is there a chance that he is getting sick so often because his Crohns' is starting up again, or is it just bad luck?
 
Sorry, Amy isn't feeling well. I don't have any experience with those issues but just wanted to send some support.

I've wondered since C's last flare if his allergies/sinus troubles triggered it but I guess I don't have any definitive evidence. Ughh...I'm so bad at the waiting, wondering, or not know cause situations, I drive myself crazy thinking out scenarios. But cold season is starting up so maybe it's just that and change of seasons and such.

Sending hugs and support your way and I hope Amy starts feeling better soon!
 
Hugs both of mind are sick with colds tis the season from thanksgiving to st. Patrick's day. Our allergist will not decrease any asthma meds during this time for that reason.
As far as pain pushing but not going for DS it is due to inflammation proctitis and rectal prolapse .it can be internal and not external
When the rectum is inflamed the inside hurts when you push.
Sorry for tmi but google prolapse and you can see how inflamed it can get in children.

Hope she feels better soon.
 
It's me again :redface:. Waiting for you all to get fed up with me ;)
Click to expand...
Never get fed up with reading your posts..

Sorry Amy's not feeling well again...:hug:

My daughter seems to have the flu every few weeks...:frown:
 
Freddy often has a lot of pain just after passing a bowel movement but not during - I don't know why - I guess the passing of the motion causes peristaltic waves to increase further up the GI tract and if there is some inflammation or stuck poo if they are constipated I guess it hurts more then???? Compared to my other two Freddy is always ill ie with a cold or some bug or other, again I don't know why. Maybe even if Andrew's crohns is not active his gut still has to work extra hard at absorbing vitamins etc and may he doesn't absorb as much as other kids and this affects his immune system? Can you ask the GI team or your GP if it is something you should be concerned about? Also I guess he is already on a vitamin supplement but what about something like echinacea? - I'm not exactly sure if it is something you could use with crohns bearing in mind crohns is an autoimmune disease - but again it may be something worth asking about??
Sorry I can't suggest anything more helpful - I hope Amy, Andrew, and your mum start to improve soon - sending hugs! xx
 
Sascot said:
It's me again :redface:. Waiting for you all to get fed up with me ;)
Couple of quick questions! Amy is bad as usual, she is a bit constipated tonight - probably all the dihydracodeine, even though I increased her Movicol today. She says it is sore "when she has finished pushing it out" but not when actually doing the poo (aah, a lovely conversation again). Any ideas why this might be?
Also Andrew is coughing again with a stuffy nose :( - this is the 3rd time in 2 months. I am concerned that his Crohns will be rearing it's head since he's not on meds. Is there a chance that he is getting sick so often because his Crohns' is starting up again, or is it just bad luck?
Click to expand...

Hey if their not fed up with me, your OK!:rosette2:
Prolapse might be something to look in to.
Grace hurts no matter what. She's opposite though,:yfaint: her pain ends after pushing except for some discomfort.
Hugs to you both.
 
Never sick of your posts! :ghug: :)

Sorry, no advice for Amy :(

But, as far as Andrew's cold, I was going to say something along the same line Suzysu re absorbing nutrients, etc. I remember Andrew didn't like the Modulen but would he drink a Boost or Ensure or Carnation Breakfast as a supplement?? Perhaps, if his nutritional status is low in some area(s), a supplement might help.
 
Maybe the pain is from straining or from irritation due to the constipation. Just a thought...

I hope things get better soon!
 

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