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Sascot

Sascot

Joined
Aug 28, 2011
Messages
3,376
I had Andrew's IBD clinic today and it went alright. A bit cramped with the GI, paediatrician, IBD nurse from Glasgow and the local IBD nurse. All happy with his progress - grown another 3cm in 3 months, apart from this annoying fistula. Unfortunately the surgeon definitely doesn't want to do any operation, so meds are the only way to go. We will wait till after Christmas and then start the 6mp - :(. Just going to have to hope for the best.
The paediatrician took one look at my face when he asked about Amy and wrote a prescription for the Amatryptaline. First dose tonight - hope it works soon. Can you believe, I phoned the surgeon's secretary to see when Amy's appt would be, and they hadn't even received it yet :ymad:. She was nice and phoned the pain clinic secretary and got the referral in 10 minutes (they are in the same building) :eek2:. Left my mobile number and told her I could come any time so long as they gave me 2 hours notice. Hope to hear soon (normal waiting list is 9 weeks :ybatty:)
 
I'm so sorry to hear that Amy has not improved and I hope the Amatryptaline helps. And that she can get that next appt quickly, I know nine weeks has to seem like forever with her feeling poorly.

I'm sorry that it has progressed to the point that you had to make a decision on 6MP. If you have come to that conclusion then I do hope it works wonders for him and the issue with the fistula.

Just wanted to send some hugs your way!!:ghug::ghug::ghug:
 
:hug: I know it's hard to have to decide on a med . I cried and fretted with each med change. I can say seeing the med work ( remicade in his case)
Really warms the heart after struggling for so long.
Hope you can make peace with your decision and hope recovery is swift.
 
So sorry for all this.:hug:
You have done all you can in the way of research and seeking the right path for him.
Your son has a wonderful advocate for him and he will learn how to deal with his future choices because he learned how to do so from you.
Amy will get relief because she has a wonderful mom that come hell or high water will get what she needs.
Hang in there it will get better.:ghug:
 
I'm glad the appointment went well for you :)
I too am sorry that you've had to make a decision for 6mp, but hopefully the results will be amazing and it will calm your fears! :hug:
Hope you get into the next appt sooner than 9 weeks - Hang in there hun - were all here for you

Xoxoxox
 
Hang in there, dear. And for the record, I think the amitryptylline is a fine idea! The mama (and no Im not forgetting you Dads) can't take care of her babies when there's no sleep and too much stress!!

Take care of you & I hope all goes well with the 6MP.

J.
 
Hi Sascot, hope all goes well with the 6mp for Andrew and also for Amy. xx
I worried and cried myself sick about the 6mp and im sure its defo done a good job for kian, they will keep a close eye as you know on his bloods etc. All the best hun. xxxx
 
It's a hard decision to do meds. Ryan had very good success with 6mp. I hope the same for Andrew. As for Amy, I hope the med helps and somebody cancels an appointment so you can get in sooner!
 
It is such a hard decision but at least your boy has a good advocate for him! Hopefully the meds will really help him and hopefully Amy will get in sooner!
 
Hey Sascot...:ghug:

How did Amy do last night?
I hope the wait for the clinic isn't too long! Good luck!

Wow! Fab progress with Andrew! :):):) I just hope the fistula takes a turn for the better! I well understand the dread of the med and can only send some comforting words in saying that they been kind to my two.

Good luck hun, my thoughts are with you and both your babies. :heart:

Dusty. xxx
 
Wondering how my life has come to this - me hiding upstairs crying because Amy is almost crying with the pain (and seeing me cry upsets her) and whimpering. My child is sitting there like that and I know there is no point taking her to the hospital because they won't do anything. Now it's Friday, the consultants, etc will be off for the weekend, so no one to call :cry:
 
I must have missed where you were considering surgical intervention for Amy..? What's the thinking there? Is there a diagnosis?

Don't they have people on call on the weekends? I'd be ringing their phones until they were batty over this if they did. Here they certainly do. :(
 
Aww... Sascot, I am so sorry Amy is still having so much pain! It just infuriates me that the A&E is not taking this more seriously. I guess the med didn't help at all? I remember MLP saying it didn't help her DS either. I don't have any experience with that med.

So there is no way to get an on call consultant or doctor(sorry I'm an so unfamiliar with your healthcare system)? I do hope she gets some relief and you as well. I am sending hugs your way! This is just heartbreaking, I wish the will of our group could move things along faster or get her relief because I know we are all hurting for you!!! hugs, hugs, hugs!
 
Hugs the elavil ( amnytrpiline ) takes a while to work I think at least two weeks or more.
You may have to give it time unfortunately for DS it did nothing but now we know his pain was crohn's related not extra Ibs things in addition to Ibd like we were told at the time.
 
aw sascot we are going through the same pain with lewis everytinlme wego a n e the docs justa say its about controlling pain . but the wtuff they give dosnt work amd im ususally driving him roumd listening to radio4. 2 oclock in the morning trying to get him to sleep . hope you get some reduction in the pain tonite i send the biggest hug your way. xx
 
Im not familiar with your health system either but this is just awful! :( can you take her to emergency? Or is someone on call? My heart just breaks for both of you. :(

Hugs,

J.
 
So sorry Amy's in pain......what happened with the new meds?

Sending lots of hugs your way.....:hug::hug::hug::hug::hug:
 
Oh Sascot...:hug::hug::hug:...there is no worse pain in the world than watching your child suffer.

Thinking of you hun and sending loads of squishy hugs your way...:Karl:

Dusty. xxx
 
I am so sorry Amy is in pain. Watching your child in pain is the worst! :voodoo::voodoo: Would they at least give her a strong pain med if you took her to the ER? Why do things always happen on Fridays? Would something like chamomile tea calm her pain any? It helps sometimes to relieve cramps.

I am thinking about you and hoping things get better soon! Don't stress over needing a good cry. I am sure Amy knows you just want her to be better. It's picking up after the cry and getting going that matters...and I know you can do that!


Tons of hugs!! :kiss::kiss:
 
Thanks! I was so excited the last couple days as it seemed the Amatryptaline was working a bit and she was sleeping a bit earlier, then bam today she is 10 times worse :voodoo:.
When she went through a bad patch at age 5 I took her to A&E 5 times and got sent home every single time. Now I just refuse to go and sit for 2 hours for them to give her Calpol :yfaint: which I have at home.
Last time we were admitted before Halloween, the doctors on the ward were soo reluctant to do anything or give anything different, we were only offered Calpol and Ibuprofen. I am under the impression the kids need to be crying hard and/or screaming to be given anything stronger.
 
I wonder if an anesthetist could give her some sort of a permanent or long term nerve block down there? First they'd have to identify the source of the pain, though, and I wonder if it would cause permanent or long term incontinence to match?

I'm sorry I haven't been following your entire story here so far. Has any pathology for her pain been suggested/tested/ruled out?
 
Yes what about a pain clinic? (That's what we'd call it here).

My heart breaks for you both.......

((Hug))

J.
 
Oh Sascot I am so sorry you are getting it from all ends. I always said that chronic pain has to be one of the worst things in the world to deal with and at such a young age. God bless her little heart. At this point, you have been so strong for her a good old fashioned cry in each others arms might be a good thing. It would let her see how much you are feeling for her, how utterly frustrated you are, and that you understand. Then pick up the pieces and fight another day.

Hugs, kisses and prayer coming your way!
 
Feeling ok today :thumleft:. Amy is not too bad and we are going to decorate the Christmas tree and go to a movie!
Muppet - at the moment I am fighting to get any testing done. To be honest I think they are hoping if they leave it long enough it will just go away :ylol:.
My paediatrician has done the faecal calprotectin and said "well, it's not Crohn's then". The MRI showed nothing apart from a tiny cyst on her right ileum which they say is "of no significance".
Other than that we get the "sometimes we just have to live with these things" and "find ways to manage the pain" or my personal fav "she looks well". The pain guy mentioned "non-specific pelvic pain" for which we will never find a reason apparently :yfaint:
 
Thanks for the update Sascot...:hug:

I hope the day goes well for you all. :) Sending loads of luck your way! :goodluck:

Thinking of you. :heart:

Dusty. xxx
 
When they tell you "sometimes we have to live with these things" is your chance to launch on a 30 minute tirade about quality of life. Filibuster until they agree to do something.

Maybe get family, friends, coworkers, passer-by, whatever, to organize a letter writing campaign to the hospital. I could help you try to get such a thing going on reddit if you wanted. This lack of urgency and empathy is totally unacceptable. You may have to do something exceptional to get past this roadblock.
 
Lol @ fillibustering the docs Muppet.

Sascot, my heart aches for you. I am so glad she is doing better today but I hope they find a solution soon for you...I know how hard it can be to watch them hurting. (((HUGS))).
I am going to decorate my tree today too...I fully expect pics when you are done! ;)
 
Have you had amy back check by a physio ect. Are her hips even, are the shoulders even. Is the spine straight?
 
Muppet, I'm lucky enough to have a pretty close relationship with her doc. But even before that, he had an open mind about everything I said and was willing to try whatever I suggested (obviously there was a fair amount of research behind my suggestions). I wasn't trying to make light of a serious situation; just got a chuckle at my mental picture...they probably think I already DO yammer on and on about things as it is! :)
 
I've been lucky that way with GIs but not GPs or hematologists. My filibusters are well researched and relentless.
 
Amen to filibustering! You are absolutely right Muppett. You sometimes have to push and push until they listen. I hate to say this but a lot of doctors have really a g-d complex and don't want to listen. You may have to switch around until you find the right doctor. I am sending you guys hugs and wishing you a peaceful weekend.
 
Things are not going great here! I am typing this at 11.30pm as Amy is too sore to sleep again. I think it was after midnight last night. I tried phoning the pain specialist and surgical secretary and got no where. They had one pain management clinic appt right at the same time I have to take my mom to her 2nd opinion appt :ybatty:
I am thinking a trip to A&E at the kids hospital tomorrow might be a good idea. At least if nothing happens there, it might speed things up for the surgical appointment. Very, very tired!
 
Had they offered you a pain management appointment prior to this? That sounds like progress, even if you couldn't take the one they had this time. Maybe another date?
 
Have you looked into Botox? I have no idea if it would be applicable to Amy's situation but it might be worth looking into. FWIW I think docs dismiss pain because they can't measure it...
 
:frown: So sorry the weekend was not good and that everything is hitting you at once. I would make that trip tomorrow if it will progress things! Keeping you in my prayers!

:ghug::ghug:
 
one thing that helped the GI and me was to have Ds rate his pain on a scale of 1 to 10 . Also to tell us if it was all of the time
some of the time
just in the morning etc....

.
This helped determine a little more "objectively " for the docs whether a treatment was kinda helping or not at all.

NEU_pain_scales.gif

http://www.sjbhealth.org/documents/Pain Scale.pdf
 
MLP is right sometimes having the doctors use a chart like that opens their eyes up as well. Sometimes those doctors need visual cues!
 
I just wanted to send hugs your way!! I'm so sorry Amy is still experiencing so much pain!!:ghug::ghug::ghug:
 
Thinking of you both Sascot...:ghug:

I hope you are able to get some help for Amy today if you end up emergency. :goodluck:

Dusty. xxx
 

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