Little Farm Girl and a New Journey

Crohn's Disease Forum

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Thanks all!:heart:

Just a quick hi.
My life has taken over the forum obsession. SORRY!
I hope you all are doing well and please know I think of you all ofter and PRAY your kiddos will be well.

Update:

Stable but.......not well.
Left leg is causing further problems and STILL no call back from the rheumy dept.

I pray I will receive word from the GP this week on what he's found out about ANYTHING!:D

I hope to check back in a few days.:heart: BYE:heart:

:soledance:
 
What! You have allowed life to take over from this forum :eek:
Sitting here with my eyelids propped open after finally getting Amy to sleep (nearly midnight).
Hope you hear from the rheumy and GP this week!
 
What could possibly be more important than this forum? :eek: :lol:

Hope you hear from the rheumy or GP soon! And that Grace is feeling well (leg and all!!!) :ghug:
 
Take care of you and your little angel Farmwife...:hug:...I hope you get some answers and soon!

Dusty. xxx
 
Oh my crohnsinct stay safe in the storm.
I heard about it and thought of you.
If I see anyone on the national news screaming I need a laptop to get to my forum,
I know it's you!

I'm going to look at your pic NOW!
Bye till later.
 
Tell O that Grace wears crullers like that.:tongue:
But never semi topless in a convertible.:tongue:

How did you think and do that. Were the balloons glue down?:yrolleyes:
What did you bribe you girls with to do that?:rof:
 
:ymad:How can this happen when she seems better???:ymad:

Someone tell me.:(

How can Grace be having semi-normal stool. YA!!!
We were able to cut back almost all her Miralax. YA!!!
I watch her carefully for any pain during BM's.
I have the glycerin suppositories next to me IF I need to use them.

So tell me anyone why in sam hill does she have blood in her stool????:confused2:

Waiting for call back from GP and
:ymad:STILL NO WORD ON THE RHEUMY APPOINTMENT!!:ymad:
 
Hugs...
DS had blood 8 months after his prolapse started even though it was better.
That was when we scheduled the scope and found out.
Hope you get answers soon
 
Is it red or darker? I'm sure you've been told this already but... if it's dark, it's from higher up... if it's bright red, from lower down.

Stephen's never had this so what I know is 'second hand' info... if it's brighter, could be fissures or hemorroids (internal or external). I have a friend who has such horribly bad internal and external hemorroids, she bleeds a large amount and says it is extremely painful but, as far as I remember, it never affected her stools (ie, not diarrhea). She's going to have them surgically removed. Has this ever been considered/checked with Grace? I don't think it's the source of all her issues (ie joint pain) but it could be a related (but independent) issue that's sending confusing signals???

(maybe a dumb suggestion given all the tests Grace has gone through??? :redface:)
 
Oh no - could it be that her gut is just not used to harder motions and they are causing some bleeding as they pass through? I really think you need the scopes now - I hope the GI see's sense and orders them asap. xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
 
:hug: THANKS
The blood was in between. Yes I know crazy!:yrolleyes: Not dark but not light! I stared at it so much and debated that question only to make up my mind and say in between!

Talked to the head nurse and told her. She said keep her on some of the Miralax which I HAVE.
The doc put the call into that specialist but no call back yet.
They did receive a letter from the rheumy dept. that said put her on some med that starts with N. Sorry I forgot. BUT my GP said no because it WILL make the GI track worse!!
The doc will call the specialist again.
He wants to get her input if possible before starting this med.
He said since heat and Tylenol work for the most part, lets keep using that.
But he know that's not going to work for ever.
 
:ghug:
Sending you and Grace loads of hugs from the UK. They need to get her sorted asap poor thing. Why can't the Dr's just communicate better - life would be so much easier!!
:ghug:
 
Yes, think how great all would be IF they would talk.:eek:

I've made up my mind to demand MONEY from the docs if she does have IBD.:ymad:

Well why NOT, we pay them to figure it out.

I bet if we all demand money from the doctors if we figure it out first,:ghug:
that we would have a cure for just about EVERYTHING!:ybatty:
 
How frustrating, sounds just like our doctors - give calpol and warm baths :yfrown:. Doesn't get to the bottom of the problem does it!
As for the blood - with all the trouble Grace has had going to the toilet, she might have a fissure inside that just hasn't healed yet even though she is going to the toilet easier. Hope the Rheumy calls soon - I wonder if they ever think about the poor parents anxiously waiting at home for them to call
 
Was the medication an 'nsaid'? You've probably read it on here somewhere but do not give her nsaids (non-steroidal anti-inflammatory drugs) like advil and ibuprofen (there may be others), tylenol is okay (not sure where aspirin sits???). Nsaids can cause GI problems! :ghug:
 
Aw poor Grace.:confused2: I just knew it was a matter of time before the bleeding would start. Really praying it is the prolapse causing it and not other inflammation. Did they move up the appointments? Scope needed ASAP.

Hugs coming your way. Hang in there.:hug:
 
Farmwife, I havn't been on in a while and when I came on today, I hoped things would be better with little farmgirl. Hope you get the scopes soon hun. Your GP sounds like he is a real advocate for little grace, really hope you get some answers soon,
 
Update:

No blood this time YA!!!!:thumleft:

But lots of pain and mucus.:yfaint:

Black specks in stool again.


:shifty-t:
Does your child's pain stay after a BM or does it go away for the most part?: :sign0085:
 
Farmwife said:
Update:

No blood this time YA!!!!:thumleft:

But lots of pain and mucus.:yfaint:

Black specks in stool again.


:shifty-t:
Does your child's pain stay after a BM or does it go away for the most part?: :sign0085:
Click to expand...

Had blood when I was 19 alot then came the mucus to heal the lining of the intestines. I hope you start to heal fast and feel better. Best of luck!
 
Farmwife,

I don't know if you are still seeing Johnny's old G.I. at Helen DeVos or not but I wanted to tell you our experience.

Johnny had no blood either when we first saw him. He wanted Johnny scoped immediately. In fact they wanted to schedule it for the next Monday and he basically insisted we not wait. He told us after our first appointment before his scope, that he thought Johnny had IBD or celiac disease. He took his CRP and SED rate the same day as the colonoscopy so he had no elevated blood levels to go from either.

I only tell you this because there was something in our case that made him urgently want Johnny scoped. In the 7 months he treated Johnny he called me at home probably 6 times to personally talk to me about treatment or symptoms.

There can be misunderstandings with the slight language barrior and I would occasionally misunderstand what he was trying to explain. I would have to ask a question sometimes more than once before he would understand what I was getting at and give me the information I wanted but I do think he is a very good doctor.

I say this only because I think he must believe there is something else going on with Grace. I found the nurse that works with him (Paul) to have endless patience and an excellent ability to explain why or why not things were or weren't being done in a way I could understand. I would call and ask to have the G.I. call you if there was something you felt wasn't covered in your appointment.

I hope you find out what is going on soon. I know they don't routinely do a Fecal cal test at Helen DeVos but could you request one? Would he agree to a scope if the results showed inflammation? If you have to pay out of pocket for one they are about $500.

I don't want to make this harder for you, just wanted to share our experience hoping it helps.

(((((Hugs))))))) Tiffany
 
Thanks Johnnysmom.


Sorry if you feel we were putting your old GI down. :rosette2:
He did a wonderful job with your son.
Thank God that GI was able to help you and you still have that boy to hug!

As far as the language barrier. My hubby would look at me ever so ofter and that would be my cue to interpret! Also funny is the fact that we're older and my hubby walked out of the room whispering I could have been a GI by now!


We need biopsies to be done during the scopes to see if she has the new IBD. The GI said she doesn't have "classic signs" of IBD so she doesn't have it. I HOPE, PRAY AND WISH he's right.

But your right when I call tomorrow I need to let the nurse know what we want and state it as plain as day. It's only fair to the GI. That way IF we get a second opinion at least he knew where we stood.:thumleft:
 
Oh man Farmwife...:hug:...it breaks my heart to read that little Grace is still waiting and suffering, bless her little cotton socks. :heart:

I hope more than anything that you soon have answers.

:hang: hun just as we are hanging in there with you. :ghug:

Dusty. xxx
 
Farmwife, .

Please don't think that I thought you were beating up on our G.I. I think any parent would and should question all treatment or lack of treatment decisions. You are both doing an amazing job at taking care of Grace.

The G.I. can take the criticism and questioning. I know he was annoyed with me a few times but he handled it well. That is part of the job, I think they expect it.

I cannot fathom why he would think he could definitively say Grace doesn't have IBD without a scope. So I would ask him because he has made decisions I thought for sure were not right and once I questioned him he did give me an explanation that made sense.

But I do have a soft spot for him. I felt like he saved my boy.

I just hope you find some answers quickly. :)

(((((hugs)))))

((((((Hugs))))))))))
 
Update:

Grace passed stool after 3 days. :dance:
Blood the first part. I'm hoping that means it could be caused by the prolapse, RIGHT?
Joint pain worsening. :(She woke up with it and had to sit on a heating pad during breakfast.

I'm still pray that EN will solve all this!:ghug:

Tomorrow meeting with doc.

Off to bed.
Good night y'all!:hug:
 
Bless Grace's heart! I am so sorry that she you still don't have an answer for her issues. I hope that tomorrow brings some answers. We are all there with you!

HUGS!!!!
 
Sorry the joint pain is worse! Not long to go until you see the doctor and hopefully get the EN going! :hug:
 
Sending loads of love and luck for Grace and the appointment! :goodluck:

Dusty. xxx
 
Time to bring this thread back up.:kiss:

The insurance won't let us to to second opinions at once. However if the possible ( their's a reason I say possible) new GI at Mott's wants her to go then insurance will cover it. Onto the possible reason.... Mott's is out-of-network for our insurance. GREAT!:voodoo:
So the social worker is check our insurance to see what can be covered. If it's not covered we can't go.

2 questions for y'all

1- Since the black stool which she is still having, her poo is now ROCK hard! Is that because of the blood or something else?

2- Grace has said multiple times the last two days her leg feels tired but yet says she need to walk on it.
Any ideas?

:dance:Still had a great day. 4 days a going!:dance:
 
Hugs
I know for DS he said it felt better stretching them or moving them
Not the term he used but I translated.
Rheumo was not surprised by the way DS described. Things.
 
We have a similar situation with the leg except its my daughters ankle...
She says she feels like she needs to crack it but if she walks it feels better......No idea...:confused2:
 
The leg issue could be Restless Leg Syndrome. Can be caused by low iron. I've had this, especially just bfr I upped my supplements. Does it happen just when she's trying to go to bed or when she's been sitting for a while? Its a very annoying sensation, doesn't hurt but bothersome. There's an urge to move your leg and the urge just grows if you don't move it. The closest way to describe it is an itch that you try NOT to scratch - it just builds until you HAVE to scratch (but no pain involved). I don't know anything that really helped other than increasing my iron pills. I did try elevating my leg (can be one or both legs) with a pillow... I think it helped very 'slightly'. :(

(Sorry, hvnt been on much :( will update Stephens thread tmrw... Havg problems with my dad :()
 
I used to have Restless Leg Syndrome and was advised to take magnesium, which got rid of it completely. I take one 300mg capsule a day. It contains a mixture of 4 different forms of magnesium.
 
Susan2 said:
I used to have Restless Leg Syndrome and was advised to take magnesium, which got rid of it completely. I take one 300mg capsule a day. It contains a mixture of 4 different forms of magnesium.
Click to expand...



I never know someone so young could have it. RLS runs in my family. I think I'm starting to get it. Grace is so young she can't relay tell me descriptive words about what her leg feels. She woke up with the feeling but now thats she's playing she's fine.

Grace can't take iron supplement. Makes her and me sick. I make sure she get food with lots of iron. He levels come back normal.YA! Low end of normal but still normal.:)

Susan2 I take mag, calcium and zinc v-mins for my muscle cramps and nerve twitches. Works great for me. I'll see what I can get for her in town.:hug:


Update:
Got second sample for test. One more to go! YA!!!
Other than the leg thing she's GREAT.
The GI nurse said since it seems like it was an upper GI bleed she might have a few more BM's with blood streaked in them. I'm to call on Monday and update them.
 
Thanks Susan2 - I will try the magnesium. I just find the RLS so annoying and, when it's at its worst, won't even allow me to fall asleep!! :ymad:

Farmwife - glad things are going well for Grace!!! Yippeeee!!!
 
Farmwife, out of curiosity, which came first, the laxatives and fiber, or the hyosciamine?

I used to try fiber to get things moving (even though insoluble fiber and whole grain seem to exacerbate my inflammation) but eventually found that just hyosciamine by itself works better for me. My unprofessional, off-the-cuff self explanation for this is that it "unties" the knots and lets stuff flow.

So sorry to hear about your little one! We're still watching our 3 year old closely, so far so good. She would have a 30% chance of Crohn's based upon her sister's diagnosis but since they're only half sisters, we're optimistic.
 
Sorry Muppet I need to update my sig.

She tried the histamine when we first got it and gave her such a horrible pains I swore I would never use it. The zantak seem to make her belly pains better but made her lower pains worse so my GP took her of of zantak. Which till lately did worked great no more belly pains for 6 months or so. YA!!! But of course came back and now she's on it again. We'll see what happens. I'm thinking of asking for a back up plan about a different kind of ulcer med instead of stopping it completely.

Now if to saw right you and your girl have crohn's, can you give me a quick back ground. That way I feel I know you better so when we have spirited debates.
 
Muppet
Thanks a bunch!:hug:

I'll look when I have time. Grace's limping again and being very emotional. :voodoo:Well at least we had 4 good days.:voodoo:
 
If anybody has license to be emotional, it's that little girl. :(

Have you taken her to any regional research-affiliated hospitals? I found great results with Boston Children's after getting pretty exasperated with the doctors in Hartford. The difference in their knowledge and their ability to apply it practically is night and day.
 
Sorry to hear she is limping again! Sounds like the insurance is causing alot of hassle - hope you get it sorted soon.
 
Muppet she will be going to UofM (C. S. Mott's children's hospital) which is highly rated. We might be going to Cincinnati also but that will be up to our second opinion GI.
If she has this ME or MIBD I will need a GI that knows how to look for it. But know that she's bleeding it might be to late.:(

Sascot don't even get me going about insurance.:voodoo:
How's your girl? :kiss:
Oh, I figured what I sending you for Christmas but remember you can't through it away. Ha/Ha you have to keep it out of guilt!:rof:
 
Mmmmm, interesting :eek2:! Gotta love insurance - I took out private insurance for Amy but because she has had similar problems since she was 5 (even though never as bad) - they won't cover this at all as it's a "pre-existing condition". I was not happy :(. Well we live and learn - if anything new happens they will cover it :lol:. Amy is doing quite well thanks - the TENS machine seems to be doing the trick at the moment :dance:
 
A Miracle has happened my hubby told me to ask you guys something!

Grace went poo and blood clots were in it!:(
How many have had this? What causes it?
Should I call the GI on call for the week-end or wait till Monday?
Why does this happen on the week-end???:ybatty:
BTW I'm not going to the ER to spend a 150 dollars to take blood and send us home!:ymad: Disappointed again!:confused2:


So basically I'm asking this about the ER to make him happy!:tongue:
 
Are they dark? Any blood on the toilet paper or in the water? For any new blood I'd page the on call doctor.
 
O has had that but while being closely monitored by a doc and on meds.

I would call the on call. Even if it ends up being nothing make them take your call and have it logged. Enough calls and maybe they will finally do something for that poor child.

Did you happen to catch it and any poo with it?
 
Muppet
Was dark clot in dark stool but not as dark as it has been.

I don't know if you read the other thread but Grace had a major FIRST bleed this time last week. Went to ER thinking finally something will happen and sent home upset because the GI on call said her labs are normal and she's happy so we can wait to get you in. Her regular GI will be back on Monday! I will be talking to him. I'm also seeking a second opinion.
 
Dark clots and dark stool can be a bad sign. I'd call the on call. Second opinion ASAP you need a doc you're confident in as soon as you can find one.
 
crohnsinct
No of course NOT.
I had the stupid hat in there and I thought she was done:ybatty: took it out to get the sample to finish the test and of course...you guessed it.:ymad: She passed it!!! Then when I was looking at it she flushed it. Poor girl she now thinks if mom starts at her poo to long she gets prick with a needle.:rof::(:rof:
 
Grace is sleeping.:eek2: She went to bed with eye pains and if I wake her up she will be mad and mean and might hurt me! Farm kids and wives don't do well with being woke up!:rof:
Beside she was DRIPPING blood last week and I still got no where. :ymad:

BUT I will call in the morning.:kiss: Thanks a great idea about getting them to log everything!:hug:
 
Dark stool and dark clots can mean small bowel bleeding and possibly risk of obstruction. Please call even if you plan to refuse the ER. I wouldn't be inclined to go either but I'd defer to a good argument from the doc.
 
I can't help with the clots, but Izz had frank blood in her stools forEVER. They just kept an eye on her bloodwork to be sure she wasn't anemic. We did very little else. She wasn't losing weight, either, though, although she was chronically fatigued.
Feel better, Grace!! :)
 
muppet said:
Has she had any stool tests? Checked for c.diff?
Click to expand...


Yes muppet she had 2 bouts of c diff. Thank GOD that our GP was on the ball and tested her JUST IN CASE she had it. He was convinced IF it had taken hold she would have been in ICU.:ywow:

Out of curiosity why do you ask?:D

Stool test? YES a few (the one with c diff also had occult blood and white blood cell, but they said that's because of the c diff) but just like anything the other 2 she did them all when she was doing GREAT. So I always will wonder.:shifty:
We just finished the newest stool sample and will be turning them in today.


I still have to call the on-call GI but.........muppet you might have just given me a new angle. Thanks:medal1:
 
C. Diff can be pretty pernicious, she may still be infected. The treatments screw up intestinal flora pretty badly, too. She should be tested again.

I only asked about c diff because in most places it's standard to test for it when there's any intestinal bleeding (sometimes just if there's diarrhea at all.)
 
I'M GOING TO GO NUTS!!!!!! DO YOU HEAR WORLD.....NUTS!!!!

Called the GI that's on-call this week-end and of course go to ER if bleeding becomes worse.
Then the nuts part.......She (the head of the GI dept.) told me when Grace's GI is back it looks like he want to scope her. WHAT?????? :ywow:
I said, well I asked for scopes but it sounded like he wanted to head in a different direction then us. She said what I see in his notes that scopes might be done.

So now what do I do? :shifty:
Tell the social worker to hold on transferring her case or do it anyway?????

:heart:I'll talk to them on Monday and they will MAKE them say yes or no to scopes!:heart:

Thanks y'all you just give the best advice!:D

:heart:Grace is having a wonderful morning. Looks like it will be a great week-end for us. I HOPE.:shifty:
 
NO!!!!!
Well why would that be done???:shifty:
She's happy, labs are OK (not perfect but OK), and of course she wasn't bleeding! You have to have blood in stool in order to have IBD.:blush:
Didn't you know?:ywow:

We have had this problem since she was six months old. Stomach pains, abdominal pains, joint pains, canker sores, skin problems, poo problems, bladder problems, liver enzyme problems, maintaining weight, high LDH leaves, low WBC and I'm sure someone else can add to what I forgot she's had. Nope, no scope!!! Each time she see the GI she's happy. So of course she's not that sick.
I know I'm on a IBD forum but if you have other idea's on what this could be.....SHARE!!!!
I'm going to go drink some coffee.
Something about you muppet fires people up.:D
 
Per redundancy protocol. SORRY! Ask for Childrens Special Health Care. If the transfer is considered a elevated level of care if would/should be cover by Children's Special Health Care. If they update her dx to IBD she should be eligible now. They will go back and pay 3 months also.

I would say the soonest scope is best. But if you don't have confidence in her Devos GI I would get the scope at U of M. I found it so important that I had confidence in the GI.

Rowan had blood clots and it was usually an indicator that things were going south fast. Rowan was a bleeder though and once the blood starts we usually saw more blood that poo always. Sometimes i would never even see any poo. Once we started seeing blood clots we were admitted twice without going through the ER and got a direct admit. Which of course is not possible on the weekend.

If the clots get worse, I would go directly to U of M and not pass go. But that is me. This would be cause to be admitted and then you know you can get all of your scopes done.

If anyone needs an elevated level of care it is defiantly little Grace. Just breaks my :heart:

If it is restless leg syndrome. Idk much about it though I have all night in my left knee. Luckily magnesium if deemed helpful, will also keep her stool loose. How much calcium is she taking in? It could cause constipation. Cal/Mag supplementation should be 2:1 but with Grace I would do more mag.
 
Blood clots is also a sign of healing. But if your seeing large clots it is the poo tearing off the clot and if they are large this is you indicator that the bleed is the size of the clot. At least this is how it was explained to me per GI.
 
I don't know the answer to your questions but just wanted you to know I am thinking of you both xxxx
 
Hugs
Hope you get answers soon
Having blood clots / bleeding when when have an Ibd dx and are on meds is very different from bleeding of unknown origin.
Good luck on monday
 
I would go for the soonest scope IMO, maybe you would finally get some answers but I don't really have an answer for you. Thinking about you and Grace. I'm off to get my own nuts - Pecan's for Pecan pie.
 
Oh My goodness - I go away for a few days and try to keep up with things on my phone - but look how much I miss!!

I am utterly and totally amazed by the lack of care that your doctors show - If she were a dog I would have had her admitted and either scopes or full thickness biopsies taken weeks - no wait MONTHS ago!!

She really really needs the scopes - call the GI on Monday and don't stop pestering whoever you speak to until they agree to scopes and fast!

I hope the rest of the weekend is ok for you - sending big hugs xxxx
 
I'd have gotten a new GI a while ago, if it were me. You really need to not be afraid to fire the doctor if he's not responsive. There are so many bad ones who are not worth your or your daughter's time.
 
Thanks muppet and everyone.:hug:

Grace had a normal BM tonight. :dance:It wasn't that much but hey...it was normal.:dance:

As far as the GI goes on Monday will have a heart to heart and let him know what we want and listen to what he wants.
If they don't match up that's OK the transferors is underway any how.
I DO NOT THINK HE IS A BAD GI! Jonnysmom- Tiffany's son went to him and saved his life.
Like I said Grace doesn't "fit the mold" and he was willing to seek a second opinion from Cincinnati.
But 6 months or even 3 is two long.
UofM will be it IF the GI now sees different.

I WILL not be playing these games any more.
They said she can't have it because of no blood and now she has blood.
They will deal with me and I will not go down quietly!
muppet you might not get this but everyone on the forum is cheering and saying it's about time you get mean.
Farm wives have always been hard headed.:ybatty:
 
WOO HOO!!! You go Farmwife! I hear you! Hard to get stirred up, but Man, get out of the way once you're on FIRE! "I pity the fool" (My shot at Mr. T) :headbang: who won't give you what you're after now!

:tank::tank::tank::tank::tank:


BRING IT ON!!
 
You go girl!! Will be thinking of you and sending warrior mom thoughts across! Yay for the normal bm :thumleft:
 
I agree with the scope demands. Also has she had a fecal calprotectin?

Hope things get moving!!!!!

J
 
AZMOM:hug:
Yes she had the stool test. Her numbers were in the 60's. Not that hi but...I read and I'm sure I could find it if you wish the the higher up the track the less reliable those numbers are.


Update:
Called twice to the GI (crohnsinct told me too).:voodoo:
Nurse called back to night and said the GI is on-call tonight and she sent the message and put it as a priority to call back. However she said he just came off a two week vacation so I might have to call again in the morning.
OK on the scopes. She said the GI has to let her or me know if he wants her down for an appointment or straight down for a scope.
Here's the thing. We were JUST went down for an appointment. I'm going to put up a fuss and so no that we just want her scoped. I know we'll see the GI before the scope. Why make us take time and money out of our day???

Grace is telling me now every day she's tired. But she is still happy most of the day. Her tummy has settled down.:dance: Looks pale, but hey were from Michigan.:rof: Only a little bit of poo and that was normal.:)
 
Yay for scopes!! :dance:. Finally!!! Hope it gets scheduled quickly :hug:
I hear you with being pale - always think it must be hard for doctors in Scotland to tell if someone is pale because they're sick or if it's natural skin colour :ylol2:
 
Halle-bloody-lujah!!! :poop::poop::poop:

I hope you get solid answers soon and scopes ASAP! :goodluck:

Dusty. xxx
 
I'm hoping and praying that the scopes will finally get you/Grace on the road to treatment!!! She's had to wait way tooooooo long already!

:Karl:
 
:thumleft:Scopes for Dec. 27th.:thumbdown:

Already asked to be put on the cancellation list.
She though the list now is further out than January.
So Grace did get moved up because of the bleeding!

Asked for a new med to help her tummy which now is worse today.:yfrown:

Our GP's nurse is trying to find out what happen and who dropped the ball for the rheumy appointment. She was Not happy! The drug (forget the name) the rheumy sent (with out seeing her)would only cause more damage to her GI.
Fine I get that but last night Grace crawled in bed and cried her heart out for 3 plus hours because of the pain.:thumbdown: Nothing I did helped. She needs something to help the joint pain. This poor kid. :cool:
Well at least she's still happy!:yfaint:
 
MLP is her left leg ( mostly knee) most of the time but......when her ankles hurts it's both of them. Also she gets weakness on the left leg. These pains and or weaknesses, now have to have meds to make it stop as where before we could try to wait it out.
No obvious swelling. Not tender to the touch. Never have been.

Took her to our GP today. He wanted to make sure the spine isn't involved. As far as her spine could FEEL nothing abnormal. But he wants x-rays done soon. So waiting for the rheumy dept. to get back with me.
 
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Susan2, farmwife,
Just wanted to say thank you on the magnesium tip. I started taking cal-mag-zinc and my leg cramps are gone two days later.

:rosette2:
 
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I'm so glad about the scopes!!!! YAY :thumleft: YAY :thumright: YAY

But I hope you can find something to help alleviate some of the joint pain until you get some answers! :ghug:
 
Yay for scopes... BUT

Dec 27th seems very far away. Could they show some priority?
nutkick.gif
 
Hoorah for finally getting an actual date for the scopes!! :thumleft: Will hold all fingers and thumbs for you to get a cancellation sooner.
That nurse sounds great - hope she manages to chase up the rheumi asap.
Sorry to hear Grace was crying for so long last night, wish I had some magic idea to help with the pain!
 
:D:D Scopes, Yay!!!!! It's about freakin' time! So glad you've found a nurse who will listen!! Sorry Grace is having a bad time :(

Has she ever taken zofran? It was a wonder for Ryan this summer.
 
Oh no, poor little Grace...:hug:...and it must surely be breaking your heart hun...:hug:

Thank goodness for the scopes! I only wish they were sooner for her but at least the are going to be done! :)

Thinking of you both, :heart:
Dusty. xxx
 
:soledance:HAPPY THANKSGIVING ONE AND ALL!:soledance:
Today will be in the 60's. Normally we'd have snow and in the 20's.
I love global warming!:ybiggrin:

What is zofran?


Update:
Grace is more tired. Still happy!:thumright:
No poo still. Last one two days ago looked ribbon like. Possible impaction?:frown:
Blows my mind seeing that the miralax is back up to full doses.
Oh well, today will be a great day of family and fun and FOOD!!!!!!!:ysmile:
 
Zofran is for vomiting.
DS has a script to always have it on hand so we can avoid the ER due to dehydration.
As part of DS 's crohn's he has repeated vomiting.
His disease is present in his stomach and duodenum so if he is flaring he will vomit multiple times a day - once or twice a week without it.
Thankfully he is old enough to know when he needs zofran before the first vomit usually.

It did not stop the nausea for him though .
Sending poo vibes your way.
High fat items tends to help move things along - most crohn use don't need that
Also lots of water- have her carry a water bottle today since it will be busy so you can track her intake.
Happy thanksgiving .
 

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