# My 4 month hiatus & D's changes in health



## SupportiveMom

The last time I was on the forum was back in October right after we were in the hospital and told D got to keep her colon and no surgery over Columbus Day/Thanksgiving (Canadian) weekend. After we came home I started to realize how much Crohn's had taken over my life. Every day I was spending hours researching, talking to people, hanging out here in hopes to find some answer that the doctors couldn't. After we were told D got to keep her colon (for now is how the doc worded it), and all the antibiotics and meds we saturated her with she started feeling better. Was able to be off the prednisone for the 1st time in 2 years! The doctors wouldn't even speculate why all of a sudden she got better, just were glad it was happening. They think it might have been a combination of everything, but I think they still aren't sure. She actually only went the bathroom 4-5 times a day! Compared to 26 at her roughest period, and 8-10 right before being admitted, this was amazing!

Because her symptoms went from night to day all of a sudden we were able to go out again, her energy picked up. I felt like she might be in this "remission" everyone talks about and I was so happy. D has reduced her medication to the lowest it has ever been, Prevacid, Imuran, & Simponi and she has been out of the hospital the longest ever, 4 months. She had started enjoying school again and attending regularly and even signed up for swim club!

About 3 weeks ago things started coming back. She has slowly progressed in the last few weeks to now having loose stools at every bowel movement, winces in pain, and goes 14-16x a day. Oh yeah, and waking up in the night to go the bathroom, having accidents, and missing school again.  Now that we know what remission feels like we want it back! Hope we can nip this in the bud soon and she can get into remission again.


----------



## Farmwife

I'm so sorry about the down turn.
Ironically this seemed to be Grace's period, 4 months of improved health and then the down turn.
She always seemed to be the revolving door.

So is the a plan in place yet to get her feeling better?


----------



## Pilgrim

That is heartbreaking. I hope you can keep each other strong and work into a new plan for remission.


----------



## Maya142

So wonderful that she had a period of feeling better, but how disappointing that it only lasted four months! I hope you can get it under control fast so that she can go back to enjoying her life :hug:
What about something like Entocort or Uceris? Less side effects than Prednisone.


----------



## kimmidwife

glad she had that 4 months but sorry to hear she is not doing well again. This disease so stinks. It seems like the good times don't last for some of our kids. Sending big hugs your way and hoping this is just a little blip in the path!


----------



## SupportiveMom

Thanks everyone. I have to say the 4 months were fantastic. I actually got to go shopping with her, go downtown and not panic over where a bathroom was. I had a teenager with regular problems that weren't clouded by her health. She has a boyfriend and felt well enough to spend time with him. It was blissful (accept maybe the boyfriend part... not really ready for that ;-) )

Plan of action is just starting to determine what is going on. Nurse is trying to get her in for a scope in the next week, but it is one of those things of fighting for a spot. Now that we are at SickKids, things move a bit slower than her old GI. Her old GI though probably would have had her admitted to the hospital again immediately. We would rather avoid it if possible. I would be shocked if she isn't back in by the end of April though. Call it Crohn's intuition.

Entocort is still a corticosteroid. I think it only masks the problem and would like her to avoid it. Prednisone was a necessary evil for 2 years, but I felt it was like putting a band aid on a stab wound. Still has the osteoporosis potential. She already has poor bone density thanks to prednisone. Can't complain about the cost of that med, especially compared to Remicade or Simponi!


----------



## izzi'smom

Just wanted to say thinking of you...I know the feeling (Crohns has taken over) and wish remission was longer for you. 
So glad you were able to enjoy "normal"...isn't it fabulous!!
Wishing some more relief for you!


----------



## Crohnick

I'm sorry to hear of your daughter's renewed struggles. This is such a perplexing and unkind disease, and especially one that no child deserves. I hope that your daughter reaches hiatus again very soon. Peace be with you.


----------



## CarolinAlaska

it is frustrating that you never know and can never put your guard down.  We can't be sure what makes them better or what makes them worse....  Hugs your way.


----------



## SupportiveMom

OMG PREDNISONE? REALLY? 

This is now the answer to next steps? I am so fuming. 2 years on prednisone, and now 3 months off prednisone and she is to go back on it full dosage? I am screaming inside! Why is there nothing else to help her? I have never heard my daughter so angry about her crohn's until I told her the doc said prednisone. She said she wanted to call the doc and swear at her and get it through her thick skull it wrecks her and turns her into a shell of herself. Now all she can tell me is to just rip her guts out. She is so angry and upset. 

I am right there with her. This sucks.


----------



## Maya142

Couldn't her GI up the dose of Imuran or Simponi instead? My daughter had a flare last month and we are increasing Imuran (and possibly switching to Simponi, incidentally) to get it under control. Or could she add something like Flagyl, just for a while?

Sending hugs - Prednisone is the worst and D deserves a LONG, LONG break from it.


----------



## Tesscorm

Sorry to hear she had a setback!  I do hope it's shortlived though and she'll quickly get back to remission.

Also sorry that she has to return to pred.   Wish I had any ideas for you.  Did they consider antibiotics?  It seems that that treatment helped push her into remission??


----------



## Sascot

How awful for you both! Can she not try the EN instead of Pred? Wasn't sure if it's something that she's tried.


----------



## positivemum

I can sympathise with you at least in part as my son is back on pred but never had to take it initally as long as your daughter. He was dead set against it too as he doesn't like the side effects.It does do the trick but it is hard on these teenagers who just want to feel 'normal'. Sending good wishes to you as I know how awful this condition is for us as desperate parents.

I hope you get some relief from this treadmill soon.


----------



## CarolinAlaska

SupportiveMom said:


> OMG PREDNISONE? REALLY?
> 
> This is now the answer to next steps? I am so fuming. 2 years on prednisone, and now 3 months off prednisone and she is to go back on it full dosage? I am screaming inside! Why is there nothing else to help her? I have never heard my daughter so angry about her crohn's until I told her the doc said prednisone. She said she wanted to call the doc and swear at her and get it through her thick skull it wrecks her and turns her into a shell of herself. Now all she can tell me is to just rip her guts out. She is so angry and upset.
> 
> I am right there with her. This sucks.


Me too.  Jaedyn would be crying with her.  I'm so sorry! Surely there are options?! :ywow:


----------



## SupportiveMom

Uping Imuran is part of the longer term plan. Once we up Simponi & it stops working she has NOTHING LEFT. I think the doctor is holding off as long as possible on uping it. Prednisone works fast. I think that is why she is going to it. D spirals pretty quickly and if she gets much higher for bathroom trips she will get hospitalized again. If she gets hospitalized I don't think she will leave unless they finally remove her colon. She is so past done, so angry, so frustrated, and beyond hurt. I know when she got to keep her colon in October it was a "keep it for now" but if we knew all she might get was 4 months we would have opted for her to take it out then.


----------



## kimmidwife

Ugh! So sorry to hear. My daughter hates prednisone too. Can't blame them really! What about trying flagyl?
Also aren't there some other things she hasn't tried? What about entyvio? We are hoping to start entyvio in the next few weeks.


----------



## SupportiveMom

Entyvio was ruled out a while back but it is worth a revisit discussion. EN Sascot you refering to Enteral Nutrition? D did an NG tube only for exclusive enteral nutrition back when we had her 1st GI. No go on that.  Flagyl doesn't help her at all and she doesn't respond to it except when she had a bacterial issue back when 1st diagnosed. 

There isn't much else she has not tried unless something has come out in the last few months i missed. That is why we moved to SickKids to get her meds not available to other pediatric GI's in Canada and to get a second consult before surgery. She is just one of those difficult cases that even stumps one of the top ped GI's. I think all that is left is LDN, and her GI hasn't seen good results in her experiences with others. If you look at my signature at the beginning of this thread the meds list is so ridiculous. You know things are bad when you actually hope your kid has cdiff cause at least that is more treatable.

To think all these she has taken during puberty, it is a miracle she has grown at all. I think when I get home today it is time for a big cuddle & netflix fest this evening, and probably a good cry.


----------



## Maya142

Has she been on Cimzia? I know it's not approved for kids yet but there are pediatric trials taking place here.
I hope you can get this under control soon :ghug:


----------



## Johnnysmom

I'm so sorry, this is just not fair.  Keeping my fingers, toes and everything else crossed that spontaneous remission suddenly appears again!!  And I hope if it does come to surgery she has a very long remission to follow while lots of new meds are being developed.

Big hugs!!:ghug:


----------



## Catherine

So sorry.

Paging Xeridea, maybe they have ideas on other possible treatments.

They put together a great list of treatments.


----------



## xeridea

Catherine said:


> So sorry.
> 
> Paging Xeridea, maybe they have ideas on other possible treatments.
> 
> They put together a great list of treatments.


Though I curate that list I don't think I can suggest any alternate medication than what's already been tried.

The only thing I can contribute is that since it seems to be primarily colonic involvement, perhaps FMT has an off-chance of stabilizing the situation a bit.


----------



## CarolinAlaska

xeridea said:


> Though I curate that list I don't think I can suggest any alternate medication than what's already been tried.
> 
> The only thing I can contribute is that since it seems to be primarily colonic involvement, perhaps FMT has an off-chance of stabilizing the situation a bit.


Fecal transplant came to my mind too, and helminthes.  I'm digging deep...


----------



## SupportiveMom

Here they won't approve them unless it is to treat c diff that doesn't seem to respond to normal treatments. Either her doc, or someone part of the IBD team wrote a paper on why we shouldn't do fecal transplants on kids yet. If we go that route it would have to be completely on our own I think. 

When I collected her stool sample this morning she has a lot of mucus, soft to liquidy stool, and blood. Little pieces here and there. From experience her descending colon has definite inflammation. It is amazing that 4 months and it would come back. 

Still wishing it was c diff instead. Hope it isn't both. 

Helminthes? Never heard of it. Have to go google it.


----------



## SupportiveMom

Parasites.... well that would be better too. At least that is treatable. She probably isnt a high candidate for it. She is not around soil or sand (not with a few feet of snow on the ground!), not around young children that might ingest that stuff. We live in a big city, so no contaminated water. But if it exists, she would be the one to get it.


----------



## Tesscorm

I think Carol was referring to helminth as a treatment option.  I know next to nothing about it but here's a link to the wiki article.

http://www.crohnsforum.com/wiki/Helminthic-Therapy-Hookworm-Whipworm


----------



## CarolinAlaska

Yeah, I read a testimony on this forum of a man who gave his daughter this and she responded well to it.  That is all I know.  They used hook worms... Interesting, but ranges right down there on the bottom with fecal transplant in the "I want to do this in my lifetime" list.  However, having my colon removed probably is even further down on the list...  Always terrible choices with IBD treatment...


----------



## SupportiveMom

Treatment? Nah... not high on my list either. 

Convinced nurse/ doc to try cortifoam until at least the c diff test comes back Tuesday. I could tell she want happy we are trying to avoid prednisone. if not much improvement by Tuesday I know she will push prednisone. Not the best answer but liveable. I better go stock up on Proactive and meditation music...


----------



## my little penguin

Wish there was an easy answer for her 
As well as an easy fix 
The whole thing stinks


----------



## DustyKat

Mega hugs to you SupportiveMom. :ghug: 

Tacrolimus worked for Angie’s lass for a couple years, has this been thrown into the mix? 

In my thoughts. :heart: 

Dusty. xxx


----------



## SupportiveMom

I had never heard of trying Tacrolimus before. The studies I find online aren't very conclusive. Is Angie still online? Hoping I tagged her correctly. Anyone else try it? 

So for the cortifoam is not making any difference. Last time she did it there was pain (I am assuming because she had inflammation at end of her colon & rectum.) This time no uncomfortability, so I am thinking it isn't going far enough up into the inflamed area. Tuesday is going to mean prednisone, I can so see that now. Yuck. I need t go find a place that gives discounts for facials if you buy them in a package, that & a discount on wine for me to manage her mood again.


----------



## izzi'smom

Tacro was a godsend...nothing else has worked and we got over two years of remission from it (we were facing surgery as well). 
I will link my Tacro thread here, but know that the docs that put her on it (at boston childrens) stressed that it was a bridge therapy-not meant for long term use. I have seen children on it long term for post - transplant use and after careful discussion, her GI and I decided to leave her on it. 
She still takes it but it is only taking the edge off (she is at 8-12 bms day/night with daily accidents and pain...when I tried to quit tacro after starting simponi she got drastically worse). 

We still may be facing a subtotal colectomy, but IMHO 2.5 years was worth it regardless, and  it's possiblt that one of the drugs that has come out since then will work for her and get us a few more years. 

http://www.crohnsforum.com/showthread.php?t=58975


----------



## SupportiveMom

If D got 2.5 years I would think something was worth it too. I think we had just come to accepting the colon removal in October thinking that would be the most reliable relief. When the doc said to hold off, healing had visibly happened, and most of the inflammation was gone with such dramatic healing in a few months after starting simponi I was thinking it was such a  great wonder drug for her. I still think it is doing her a lot of good. 

When trying to accept losing her colon we started going to the ostomy meetings and talking to some of the people that have been through the other side like Jessica Grossman & her mom, and other people. It was great to have a role model for D in Uncover Ostomy that Crohn's didn't have to define D and she could become the successful person she has always meant to be. I even met with an amazing mom who's 8 yr old has an ostomy and has never regretted the decision. I know there are plenty of problem stories too.

Three years of this with only a 4 month break... I am not sure D is willing to keep dealing with more failed medicines. It just might finally be time to say enough and do the surgery. I want to see another scope or MRE for her and then decide. It is just so frustrating to know when enough is enough. 

So izzi is on Simponi & Tacro & still 8-12x with accidents? How do you manage that? D is not at 10-12x thanks to adding cortifoam this weekend, but accidents are still happening. I think D handled the accidents better when she was in middle school. Now it is downright embarrassing in high school.


----------



## SupportiveMom

Well after a 3 month break from predinsone she is now back on, and to full dosage of 40 mg. She has dropped 6 lbs in 1 1/2 week. Cortifoam not doing the trick. She doesn't even feel the stinging it normally brings, so I am guessing the inflammation is higher up in her colon. More blood in the stool too so doc told us we have to do prednisone now & I think I don't have much other choice in the matter. 

C Diff was negative. I actually wished it was positive. I can't believe I wish she had c diff over what she is facing right now. 

This roller coaster of health is so hard. How do you deal with it with your kid?


----------



## kimmidwife

SM,
The roller coaster is really tough. I am also on a Facebook Crohn's and colitis group there are a number of kids who have had their colons removed maybe you want to join and get some advice?
Send me a PM if you are interested.


----------



## Farmwife

Ditto, it's a tough ride. 
I deal with it because I don't have a choice. 
My faith, friends and this forum are the only things that keep me staying in the seat some days.

Of course not all of us are facing the same choices you are but we're all here to help if it's needed.


----------



## DustyKat

Hugs, hugs and more hugs to you SupportiveMom. :ghug: 

Yes, the roller coaster ride is one I wished I could have stepped off many a time. *sigh*  

In my case whilst I found friends and family a comfort to a degree they didn’t really understand and I still felt something was missing, it was the forum that filled that void. It still doesn’t stop the nagging fears and heartbreak as such but it did help me to voice my concerns, frustrations and overwhelming feelings of helplessness here. It helped immensely that I knew the folk here truly understood what I was feeling and thinking and I knew they would be here with support any time I needed it.  

As to what you wish for….oh man, I have so BTDT! In my case it just turned into another way to beat myself over the head with the guilt bat! :eek2: :lol: See, we so understand hun. :hug: 

Thinking of you and :hang: mum! 

Dusty. xxx


----------



## Sascot

Sorry to hear that. Hope the Pred at least brings some relief until they can figure out what to do


----------



## SupportiveMom

Kim we have probably liked /commented on similar things. I am part of that group along with the Ostomy group too. Though I like the facebook group I like our community here best. Maybe it might help to get some addition advice too. Thanks for the suggestion Kim


----------



## SupportiveMom

It is so frustrating being on this ride at times. It is great we have places like this that help!


----------



## Tesscorm

I'm sorry that D, you, your family are all dealing with the struggles!  When I've had worries, scares, concerns, etc., etc., I also found my forum friends to be the best support.  While family and friends do care and offer their support, they really don't understand the concerns that come with every decision and, unless it's your child who is ill, I think it's hard to truly grasp our fears and worries.

It's hard but try to keep believing D will get to remission and stay there!!


----------



## greypup

I will help share in that belief.

You will find the right therapy for D.  

She WILL get and STAY in remission!!!


----------



## Maya142

We're all thinking of you and D. Hope prednisone can get her back on track!


----------



## CarolinAlaska

I'm right there with you.  It is very frustrating at times.  I hope she won't have to be on prednisone long....


----------



## SupportiveMom

I ran out to the pharmacy & grocery store and returned to find my kids physically attacking each other. It was over D taking her older sister S's things. I know normal teenage stuff, but not expecting the physical stuff but guess it was boiling over over issues between them. Strange behavior as they are very close sisters. 

After a 1 hr talk S shared how difficult it is for her that D is sick. She misses hanging out with her and doing things with her. D is retreating into her room (her bathroom is 5 steps away so it is easier to be there ). I am glad S shared the root of what is bothering her. Lesson learned. Crohns effects the entire family.


----------



## my little penguin

Hugs 
Btdt
Hence family therapy for the non sick kiddos since its sooooo hard on them as well


----------



## Maya142

Yes, we sent both girls to psychologists. Both are sick but the younger one is much sicker, and it's hard on her older sister since she gets a lot more attention. It leads to a lot of guilt and resentment.
It's so so hard but having them see therapists really helped :ghug:


----------



## SupportiveMom

We did family therapy for a bit, 6 months I think. Looks like it's time to go back or have individual counciling. How do u feel it helps the on CD kids MLP? is individual better than family for this?


----------



## my little penguin

We have a combo
Family for a while then individual 

The big thing that helped the most

Each day. 
30 minutes of mom  or dad time for each kid without distraction from the other kiddo 
If the Ibd kid is sick then DH can handle for the 30 minutes 

This really has helped things


----------



## SupportiveMom

Having individual time for my teens? They might think it's a punishment. Not that they don't like us, its just all about ANYONE else but the parents.


----------



## kimmidwife

SM,
So there with you!


----------



## SupportiveMom

Now 8 days on prednisone. Thought I would see better improvement by now. Down to 10-11x a day. 1/2 with blood. Getting up in the middle of the night happens every other day. There is improvement, but IMO, not fast enough. I worry prednisone isn't doing what is used to do for her. Or maybe it is that bad inside and its just a lot of inflammation. Into SickKids we go in Tuesday for next steps, scheduling the scope or MRE. Weight loss is slowing down, but that is probably because of the prednisone and now her eating a little more + water weight gain.

I don't know what I hope for in the appointment anymore except for Crohn's & Colitis Canada's campaign - "Make it Stop. For Life." That is all I keep thinking about, just making it stop!


----------



## CarolinAlaska

I'm sorry to hear it.  I agree wholeheartedly.


----------



## kimmidwife

Very sorry to hear the pred is not working well. If her insides are so inflamed she may not be absorbing it well. We think my daughter is having absorption issues as well.


----------



## SupportiveMom

I am finally seeing improvement with prednisone at day 10. Normally doesn't take this long though. Absorption never thought of that. What made you come up with that possibility?


----------



## kimmidwife

SM,
What made us think of it is caitlyn not gaining any weight on the prednisone even though she is eating. She did get very slightly the swollen face but that was just recently and she has been in the pred since October. It makes me think she is not properly absorbing things.


----------



## SupportiveMom

Doc appointment today. Scope scheduled for 2 weeks beginning of April. Surgery consult being scheduled too. Doc says enough is enough. Though she thinks as soon as there is supply of Entyvio she will apply for D to be on it, but it will probably happen after surgery. After scope we will have a new timeline. She was surprised the flare happened so fast, but thinks prednisone is now working since she is going 8 versus the 16 before prednisone. I guess I just expected quicker reaction. Blood 50% of the time doesn't show me it is working, but I will give it more time.

Entyvio was just approved here in Canada I understand. I'm told it has a few years before approval for children. Infusion appointments again... this better work. I like Simponi and would rather use it.


----------



## Lady Organic

latest new 2015 report on Fecal transplant in CD youth:

http://journals.lww.com/ibdjournal/...icrobial_Transplant_Effect_on_Clinical.7.aspx

Plus, several clinical trials going on for pediatric Crohns right now:

https://clinicaltrials.gov/ct2/results?term=crohns+fecal+transplant&Search=Search

Can they accept Canadians? I dont know, but it could be worth the try.
best wishes.


----------



## Lady Organic

has your daughter tried any diet such as IBD-AID? 

http://www.nutritionj.com/content/13/1/5


----------



## SupportiveMom

Lady organic thank you for the suggestions. Trials also happen here too, but rarely include children. They mostly happen through SickKids, or connection to I understand as they receive quite a bit of funding for this as an IBD centre. D has never formally been in a study, but has recieved drugs part of the study and included antidoctally. At this stage I wouldn't send my kid south for treatment as There isn't anything she can't be offered here. 

Fecal transplants are out. I have seen first hand some issues that convince me not to offer it to my kid. Until they get the science better on it and the risk lowered I won't chance it.


----------



## Lady Organic

SupportiveMom said:


> Fecal transplants are out. I have seen first hand some issues that convince me not to offer it to my kid. Until they get the science better on it and the risk lowered I won't chance it.


Could you share your knowledge on possible known or observed bad consequences please? Im highly interested in this treatment and I wanted to enroll in a trial in Calgary last fall, but finally I was not illegible. Thanks.


----------



## SupportiveMom

I met someone recently that perforated her colon during a FMT. She had to be rushed to emergency. She had to have emergency surgery and now has an ostomy because of it. Please keep in mind this in 1 person. I don't mean to bad-mouth the procedure, but she did it on her own as her doc would not perform it. She (& a friend of hers) did this to her, so she is the one taking the risk and has to live with the consequences. I  couldn't do that to my kid as I wouldn't forgive myself for it. Her pediatric GI does not see the benefits yet for kids and says it has a far way to go before she will think of it as another form of treatment. 

Why were you in-illegible?


----------



## Maya142

Really sorry to hear about D's flare and possible surgery . Your poor girl, she's had to deal with so much.
M is starting Simponi tomorrow and we are really hoping it will be her miracle drug.


----------



## Lady Organic

Ok I understand. Do it at home rectal enemas procedure is definately risky. I agree. Some people do it the gastric way which seems easier. I have chose not to try it at home for now. The dr who leads the trial in Calgary finally refused me because I was out of province. I was even considering moving to Calgary for 3 months, because the trial involves multiple visits, but that didnt convince them. Moreover, my colitis escalated pretty fast and I was no longer in the mild-moderate category required for that trial, so I had to abandon that project. My GI was ready to collaborate with me on this, share and explain my case to the researcher. 

Now I am in remission, but if I am in a flare again, I'd be more than willing to try it under the supervision of medical GI research staff. Dr. Suskind who is the author and doctor of the latest encouraging study I posted above, works with naso-gastric transplant with pediatrics. He is still recruiting at this time as seen in the clinical trials going on.


----------



## SupportiveMom

Maya Simponi has been fntastic! It was easy enough for D to do all by herself so you won't have issues for your kid. No burning like Humira. I hope it works! keep me posted.


----------



## SupportiveMom

Lady I think there is a trial in Toronto too. Did you look at the trials page on the health canada website? I will look for that link. I thought it was cool to see what trips were available.


----------



## SupportiveMom

Take a look here for access to what Crohn's Colitis Canada lists, and has links to other sites like Health Canada.http://www.crohnsandcolitis.ca/site/c.dtJRL9NUJmL4H/b.9012563/k.A347/Clinical_Studies.htm


----------



## Maya142

Thanks -M has heard all about how much Simponi does not hurt from her older sister who was on it from AS. I think she's quite excited. She's on a much higher dose than her sister was though, makes me nervous even though it shouldn't considering she's been on high dose Remicade for months now.


----------



## SupportiveMom

An update... waiting for a cancelation for another scope and we should have the date for the surgeon appointment soon. Hope is to have surgery mid to late June so she might have a summer to enjoy and tries to ginish grade 9. She may not be able to wait until June. 

Doc is having her taper prednisone now. Down only 5 mg and blood is coming back stronger. Stool trips have mellowed to 7-8. Not sure how low I will let her go on prednisone with symptoms like this. She also has to be strong enough for surgery. At least prednisone is making her eat!


----------



## FrozenGirl

I hope she will be able to make it through the school year. IBD is hard enough without adding school stuff in. (Though Im sure if she did need it prior the school would make accommodations) 

Pred sucks that way is is side effect ridden but effective. Tapering can be a hard choice. 

I hope she doesnt get to much worse. Thinking of both of you.


----------



## DustyKat

I’m so sorry I am late to this SupportiveMom and so very sorry to read of all your lass and yourself have been going through. :ghug: 

How are you getting on now? 

Just to touch on the pred side of things…many people find that after the first course of Prednisone subsequent courses do take longer to kick in and often a higher starting dose is needed. 

Thinking of you both. :heart: 

Dusty. xxx


----------



## SupportiveMom

Thursday she had tapered to 25 mg of prednisone & had her Simponi needle. She seems to be doing well (knock on wood). Staying steady at 6 trips and no significant blood the flare seems to have ended. Figures because our scope is soon & I would rather them get a better picture during a flare. I am almost tempted to cancel/delay it. I am waiting for her to be on the other side of 40 mg - say 10-15 mg of prednisone and see how her symptoms do. If she stays steady then her flare has truly subsided. 

The surgery would be so easier to justify if she kept flaring, but I have that stupid voice inside me head saying "what if this is the start of a long remission?" that makes me hesitant. It is as if her colon really is mocking us all!


----------



## Maya142

Is surgery definitely happening then?
Hope the Simponi + pred continues to work -- fingers crossed!


----------



## SupportiveMom

Surgery is supposed to happen regardless as she can't stay in remission. 4 months is not technically remission, at least to her GI. 

She can't stay on prednisone again long term. Her GI didn't even want her on it but we had no choice to get her under control fast. (even though it took 5 weeks or so!) She is to be on it no more than 11 weeks (3 weeks full dosage, then taper 5 mg per week), and if she could handle it we would have her taper faster. Our next appointment is in 3 weeks. 

Being on prednisone for surgery is not ideal but either is flaring so we have to see how it goes. Every 3-4 days she gets this one bowel movement that dumps a ton of blood out in the toilet. Something is still happening so I can't imagine why we would not proceed. This bloody bowel movement is red color (not dark so I know it is lower in her colon) & comes with a solid (but soft) stool. All the rest of her bowel movements are formed solid, & soft. Anyone else have this before?


----------



## FrozenGirl

Ugh, that sucks she isn't doing well and has to be on prednisone. Any ideas on the timing of surgery? Though I'm guessing it depends on how she is doing, if you can afford to wait or not. Sending good thoughts your way.


----------



## DustyKat

Thanks for the update SupportiveMom. :ghug:

Such a difficult time for you hun. I hope you soon have answers one way or the other as the waiting and wondering surely does take its toll.  

Dusty. xxx


----------



## SupportiveMom

Thanks. It is this fine line of health we walk with our kids. It is exhausting. I don't want to wave the flag at the hospital IBD clinic because she has been worse, but I'm afraid of how worse she can get once we taper more. I won't let her go below 15 mg if she is like this still. But maybe it will all just subside? She isn't at the top of the surgery list, with worse cases filling the hospital & I hate being squeaky wheel. what if  this subsides & she can make it if I just give it time? Oh this will drive me crazy. no wonder I don't sleep...


----------



## DustyKat

It is so hard not to be thinking the way you are mum. :ghug: When we have seen our kids at their worst it is little wonder we never want them to go back to that place again, it is just too heartbreaking. In the meantime our thoughts and imagination run rampant and are easily our worst enemy when we least them to be. :ghug: 

:hang: mum! You are doing a fab job and our thoughts are with you. :heart: 

Dusty. xxx


----------



## Maya142

Sending hugs :ghug:.


----------



## SupportiveMom

Thanks everyone for the support! It means a lot.

Scope now moved to Friday April 24th & surgeon appointment on the 28th. I hope he plans on giving us the surgery date at that appointment. I hate not being able to plan anything because that will need lots of recovery time. 

This is her 1st prep for colonoscopy as an outpatient. Any tips or tricks? It is an afternoon appt. so it will be a long day I'm sure.


----------



## FrozenGirl

It would be easier to plan with a date for sure. Scope prep, ugh. Softest TP you can buy, tablet, or some sort of electronic for the bathroom, maybe with movies or games. Don't wipe, dab. Which prep is she doing?


----------



## SupportiveMom

Pico... she has done that before, just not at home


----------



## Crohns08

Tucks wipes or any kind of flushable wet wipe always helps with me as far as sensitivity when going so much. Which prep is she taking? I always drank mine through a straw and chased it with sprite to help with the taste.


----------



## SupportiveMom

I will buy her a big bottle of ginger ale & nice toilet paper. We always bring the computer & tablet. Maybe I should get some artist pencils and sketch pad for drawing. It will be a long day. Surprised she starts the prep the day before when she scopes at 3 pm. We have only ever done it 12 hrs before or sooner. Guess you can't be too careful.


----------



## crohnsinct

For O preps at home were infinitely easier than inpatient.  More comfortable etc.  We have also had an afternoon prep time and still started the day prior.  The only thing the afternoon time changed was the NPO cut off time.  

Good Luck!


----------



## FrozenGirl

Yeah even for 2 PM appt I always get the same instructions, just midnight NPO vs 2AM NPO. Glad she is doing one she has done before, nice to know what to expect. Sketching stuff might be nice for the end period of 'feeling sucky but not 100% tied to the washroom'.


----------



## SupportiveMom

For the 1st time in all of this I am asking my mom to come with me to the scope. My mom is a "hands off" type of parent but I really am feeling a need for extra support for this appointment. I don't know why this time I feel like I need it. My husband on most days "can't deal" with this stuff, and his choice to be uneducated about where D is with this disease and choosing not to step up in making decisions has gotten me down. D decided last September she doesn't want him at appointments anymore cause he starts talking about things that don't matter and have answers to at least a year or more. I'm not sure if I'm asking for more trouble with my mom to come or it will make things worse.


----------



## hawkeye

One tip I recommend is the cranberry pico salax. I prefer the cranberry flavoured Pico compared with the orange. Costco was the only place around here that carried that flavour.

A small tube of diaper cream may help at the end of the prep.


----------



## FrozenGirl

If your mom can lend some extra support then I see no harm in having her there. I can't imagine being the only involved parent for D. My dad (I'm an adult) is rather hands off. We don't really talk about it and he just drops me off for appointments. I know that's hard on my mom being the only one, you are not alone in that I suspect.


----------



## kimmidwife

Very sorry to hear your husband is not supportive in this. I think some people just get overwhelmed with medical stuff and they shut down and so say inappropriate things. Hopefully your Mom will be able to be a support for you. Wishing her luck with the scopes!


----------



## SupportiveMom

My husband is in support of what is happening, just shuts down and flees when the tough decisions happen. You hit it on the head with overwhelmed. He can handle picking up meds & always remembering to have good toilet paper in the house, but ask him to participate in the decision of surgery or changing of a medication he turns to mush and says "whatever you think". Finally I am learning to use him for his strengths. I just hope my mom can fill in the gaps. Not holding my breath but thinking positively!


----------



## Farmwife

I understand, believe me  I understand about the mom thing.:wink:

Can you talk to your mom before hand and tell her why you really want her there. 
Explain it's not for criticism but support and a sounding board.
I would opt not to have my mom come if she wouldn't say she could do these things or make you believe it. 
Like I said, I understand the mom thing.


----------



## SupportiveMom

Good idea Farmwife. Actually I just want her there to verify to me what the docs say in case I go numb if they same something scary. If she criticizes I think D will lose it on her grandma herself!

Now how to have the conversation tactfully...


----------



## Maya142

:lol: D sounds like my daughter. M was recently inpatient and the attending GI told his entire team they wouldn't be waking her up for rounds because he was afraid M would punch him if he did!

Good luck SupportiveMom, thinking of you and D.


----------



## SupportiveMom

On Maya D & M sound like 2 peas in a pod. D was angry with her GI but was so mad she couldn't come up with words to say tactfully so she kept her mouth shut. Afterwards I encouraged her to write a letter to her we would never give her to let her emotions out. Oh boy if her GI saw it she would drop her as a patient or at least not help much. She said things like " you asked me why it is I think I got sicker. You are the one with all the medical degrees and you have to ask me? I shouldn't have to do your job, try doing your own job and get me better!"

I guess kids get hardened pretty quick dealing with this.


----------



## Maya142

Our poor kids  Poor D. She's been through so much, no wonder she's mad. We have a lot of "why don't I get better when my sister and dad got better" here. It's so tough.


----------



## Mehita

Dads always just want to fix things, I think, and IBD isn't "fixable". My DH is similar. He needs tasks that he can accomplish and be done with like picking up meds, paying bills, washing out the puke bucket. I just go with it.

Maybe you can ask your mom to simply take notes? Tell her you want to focus on the info as it comes, but if she could take notes for you that would be wonderful. She'd also be so busy taking notes that she might not have enough time to think of questions or interrupt. KWIM?


----------



## Farmwife

SupportiveMom said:


> Now how to have the conversation tactfully...


Pray, pray and pray................and then pray some more............


----------



## crohnsinct

I give you credit.  I am too much  of a control freak to let DH have a say in anything:redface:  I don't even want him to come to scopes, appointments and such now because he muddies the water.  The doc and I have been together for 3 years, we have our own shorthand, catching him up will just slow us down.  Love him to death and like you say he has his own strengths but there is a clear division of labor in our home. He is just too busy with work to have the time to research the way I do so it is better to let him off the hook also.  Besides, he would just do whatever the doc said, no questions asked.


----------



## SupportiveMom

I will let my hubby come to 1-2 appointments a year, but he knows the rules, sit and listen. Questions are pre-screened by me cause if he asks something I already know answers to I don't want to lose time with the doctor (boy I just realized I sound mean, I swear I'm not!). When I was the one that had to make the choice to move to Remicade & he couldn't deal with it this is how we established our roles. It actually affects D's role with her Dad in a negative way & she is normally the one that says she doesn't want him to come. 

I am normally a control freak. Since October when we canceled the surgery I have been holding my breath waiting for where we are now, surgery, cause I knew it was coming sooner or later. In all the ups and downs of this IBD ride this part has been the scariest for me. It took me quite a bit to get over this feeling like I failed because all that I did. (I know irrational thought but still had to get through it). I think that is why I'm looking for that support person. I envy those couples that get through this together by each others side. My controlling side would probably never let it happen though.


----------



## Maya142

Hang in there SupportiveMom :ghug:

Both my girls don't want Dad at appointments even though he has AS like them.  M definitely would NEVER talk about GI stuff in front of him either. I think this must be pretty common with teenage girls. 
I catch him up after appointments, but I'm the one that does the research.


----------



## SupportiveMom

This will sound strange, but I figure if anyone understands this you all will. The last few weeks leading up to D's scope I have been hoping the prednisone helps heal her enough for symptoms to subside, but not too much that the scope doesn't show what needs to be cut away clearly. Since she started to taper prednisone she has been reduce to 4 a day bowel movements, no blood. Now down to 10 mg, Thursday she found her 1st blood back in her stool, but has only happened 2 xs. Yesterday she went 8x. Granted she has her period, but doubling bowel trips because of her period is odd, even for her. Must be inflammation coming back. The next few days will tell.

Now I am upset, and slightly relieved because the scope is Friday. Mostly upset though. Did I jinx myself?


----------



## pdx

I totally understand that thinking.  I've got a similar thought process going on this week too, related to Remicade dosing.  Hope your daughter's scope prep and scope go smoothly this week, and that you get the answers you need to move forward.


----------



## crohniekid

I can totally sympathize!!  R has his scopes in 2 weeks and I feel the same way. I want him to feel better and the scopes to show improvement over February's but at the same time I want them to correlate with his worsening symptoms so we can figure out how to help him. I hope that yours go smoothly and help you make the necessary decisions to move forward with D's surgery.


----------



## FrozenGirl

Ugh. It's a lose-lose scenario. You want to "see" that there is something so you can do something about it, but at the same time you want healing because healing is good. Both frustrating. Hope scope goes well ( and prep is survivable, I won't say well).


----------



## SupportiveMom

D had her Simponi on Thursday.  She normally gets a bit of a boost to feel better afterwards for a few days.  This time no boost.  Looks like Simponi could be coming to an end sooner than I thought. That could lead to inflammation returning. Stinks there is no antibodies test for Simponi.


----------



## Jmrogers4

Just big hugs for you. Hope the week flies by so you can get to scopes quickly


----------



## Maya142

Sending hugs! Good luck with scopes and prep :ghug:


----------



## CarolinAlaska

I'm sorry that it didn't help this time...  I hope they can figure something out soon.


----------



## SupportiveMom

Last night was horrid. Up 3x last night! Neither of us was awake enough to check for blood. She is supposed to taper to 5 mg prednisone Thursday. I don't think I will continue the taper. I'm almost tempted to increase it but will wait it out. I'm going to send an email to her nurse. I have no idea if we will even see her doc for the scope (last time it was some doctor I had never met, got to love a teaching hospital!) So I want to have direction for the weekend after the scope. Maybe I'm jumping the gun, a bad 24 hrs, but I don't want to see her tank fast. At least she hasn't lost weight yet!


----------



## CarolinAlaska

I'm sorry about the bad night, hopefully it was a blip and will disappear as soon as it came.


----------



## FrozenGirl

Ugh that sucks. I agree on not tapering and letting the nurse know.  Hopefully it is just a blip but it isn't worth her getting even worse to go down a bit on the pred.


----------



## SupportiveMom

My girl is so amazing. As of noon has already gone 8 x, still dragged herself to school so she could participate in Earth Day events today. I told her to stay home she wouldn't have it. Hopefully the half day of school doesn't exhaust her too much. Blood is definitely back. She had it 2x so far. Tomorrow starts low residue diet for colonoscopy /endoscopy prep. 

I got a reminder on facebook to look at memories from previous posts on this day in years past. Last april she was admitted & the year before. April is not a good month for her. Wonder why...


----------



## Sascot

Sorry things are getting worse. Really hope the scopes go okay and they can come up with a plan to help quickly


----------



## kimmidwife

Sorry things are getting worse. We have seen a pattern with a certain time of year being the worst. For us it is September. I have heard this from a lot of other parents as well.


----------



## Maya142

April is M's worst month too. She was admitted this year and last in April. Weird.

Way to go D for getting to school! Hope they can get her feeling better SOON!


----------



## DanceMom

A seems to be the worst in June & July....no idea why.  I hope today was a better day for your sweet girl.


----------



## Catherine

Our GI said the that in her practice the danger time appears to be September/October/November.

This is the end of the school year and the beginning of our spring.  This may point to Vitamin D playing a role for some patients.


----------



## SupportiveMom

Catherine you may be onto something. it is our spring here now and this winter has made it tough to get any vitamin D. Wonder if there is a study about this?


----------



## my little penguin

Lots of studies in vitamin D and inflammation plus seasonal
Component to inflammatory diseases .
DS takes 2000 IU a day to keep up


----------



## Catherine

I know there is a study being done currently in Australia on vitamin d but it is a MS study.


----------



## SupportiveMom

MLP I didn't know about seasonal studies. I will search.

I am worried about tapering any further on prednisone. she is at 10 mg and now consistently back at 8x a day, blood 1-2 times a day. I want her off prednisone but know if I do its just going to get worse. sent an email off to the nurse yesterday. hope I get a response today or I will be calling. Pico Salax tomorrow afternoon means she will be going even more and it will be hard to tell what's the crohns and what's the pico.

I now don't have to worry about my mom not offering the right support coming to the scope. She cancelled on me last night. Something about a sick puppy (my parents are breeders). It is probably for the better. She still believes surgery isn't the right choice. She also has NO idea how bad D is because she prefers to wear blinders. Looks like I'm on my own again!


----------



## Pilgrim

Sounds like a blessing in disguise re: your mom. 

Can you record the meeting so you can reference it later? Might be easier than taking notes.


----------



## Farmwife

I'm sorry about your mom but agree it might be a blessing in disguise. 
Recording it might be a great idea.

HUGS


----------



## CarolinAlaska

I'm sorry about your mom backing out.  I know that must feel awful.  We're here for what it's worth.


----------



## Mehita

So sorry...


----------



## Jmrogers4

Yeah, we're Aug/Sep (usually correlates to wildfires and smoke filled air) and Dec/Jan (inversion time no sun and yucky smoke filled air from fireplaces).


----------



## Maya142

Sorry about your Mom. Will be thinking of you and D.


----------



## my little penguin

Thinking of you


----------



## my little penguin

http://www.jacionline.org/article/S0091-6749(04)00472-5/abstract


Paper seasonal allergies and crohns


----------



## SupportiveMom

Sigmoid colon & rectum... they have to go. Finally know what we are looking at for what needs to go, but of course a Fellow did the scope, has no idea what that means for surgery. I had to educate her since she was saying things like, "have you considered rectal therapies?" HA HA HA cortifoam, steroid enemas, been there, done that! 

So the million dollar question is, permanent ostomy or temporary ostomy? 

Based upon the notes I can see her GI is really banking on her having UC now & not crohns. The last testing we had they had her diagnosis listed as Crohn's Colitis. This time she has listed " UC/?" At first this bothered me, but I thought back on the last 2.5 years since diagnosis and realize they have listed her as every spectrum. Why would they finally settle on which it is now? Sometimes I think they really have no clue.


----------



## lgpcarter

I can't imagine how frustrating it would be not to have a firm diagnosis. When you do you see GI or Surgeon to make some decisions?


----------



## SupportiveMom

I actually think the spectrum of only 3 types of IBD aren't enough. As research gets better I think they will expand it. Meds are the same treatment is the same, surgery success is the only part that makes the difference. Switching her to UC diagnosis on the form could not necessarily change her diagnosis, and I have heard many a UC patient have surgery and down the road have their diagnosis switched to CD. I'm still banking on Crohns Colitis (crohns limited to her colon) as her diagnosis. Her inflammation in her esophagus & pancreas 2.5 years ago I won't ignore. Hope it never happens again but no guarantees.  May 12 for review of surgery steps with GI & surgeon.


----------



## my little penguin

Glad you have a partial lpn 
Hopefully surgery will bring much needed relief.
Agree there are way more than three types of Ibd 
DS is another kid that doesn't fit well


----------



## Lady Organic

about rectal therapies:
http://www.ncbi.nlm.nih.gov/pubmed/?term=ulcerative+colitis+curcumine+enemas

and this is the response I go about a month ago by the pharmaceutical company located in India who produced the enemas for the study:

'' RCT on NCB 02 has evoked an excellent response.
The product is yet to be launched for clinical practice. I do not have any samples to share now.
We will be launching this product soon along with  oral formulation. This, we believe , will be a practicable solution to patients of IBD .''

Let me know if you want the contact information.


----------



## SupportiveMom

Lady thanks for the info. So there is going to be a new product beyond steroid enemas or cortifoam?


----------



## SupportiveMom

Any time line on releasing the product? Name?


----------



## Lady Organic

I dont have any more info unfortunately, this was the response I got from the pharmaceutical company. Soon to be on the market... excatly when, I dont know, but since they are located in India, this is the kind of treatment we will most likely individually have to break barriers to get. Doctors here wont likely know about this treatment for a long long time...just like another treatment offred for UC in Japan since many years which I talked about in the reseacrh section of the forum. I intend to get those enemas if I flare on purinethol.


----------



## SupportiveMom

Biopsies came back today. Nurse contacted me to ask to push the meeting back from the 12th to the 14th because the team needs to review and discuss. 

Should I be worried? They took biopsies throughout, we know the inflammation is in sigmoid colon & rectum. There was a concern about the level of mucous in her stomach but I didn't give it much concern. Ugh! A week to review with the team?


----------



## my little penguin

That's a good thing so they can talk through the options
Better than bring the kiddo in tonight for surgery Friday .

My oldest had lots of extra mucus in duodendum ( non Ibd kiddo ) - lactose intolerance was the problem .

Good luck


----------



## SupportiveMom

I know d is lactose intolerant. She doesn't eat dairy except for rare occasions with lactose pills. How long ago had your nonIBD  kid had dairy before the scope?


----------



## kimmidwife

Hope they figure things out quickly!


----------



## SupportiveMom

Thanks. I know mucus is supposed to be your body's response to inflammation. She was at the tail of the flare at time of scope but it seems this flare  isn't completely ending like her last one, even on her low dose of prednisone the doc refuses to take her off of. I get it because I think if she tapers completely her flare will come back full force. 

I guess I should be glad they want the extra time to review instead of rushing through it.


----------



## pdx

I don't think the wait is necessarily bad news.  It could be that the team just couldn't find a common meeting time until after the 12th.  (I totally understand your concern, however, and I hate waiting for test results and decisions!)  Hope that your daughter feels well while you wait.


----------



## SupportiveMom

Thank you Dusty Kat for reminding me how to be a mama bear with the chaos you went through recently. I had to evoke your mama bear energy when the moved our appointment twice. 1 time for a delay of 2 days I can manage, but then try to push me off another week? You crazy? Nurse called at 6 pm to cancel our 8 am appt. Something  'Came up and could I do next week?'  I told her I will be moved a few hours but certainly not more than that. Bump someone else! After a few emails and calls they moved us to today at 11. 

We were going with the assumption that D's  sigmoid colon could be removed and she could have a resection. 8" wouldn't be bad to remove and we could maybe skip the temp ostomy. Biopsies I now understand can be so much more important. Disease present just not inflammation in transverse colon & ascending colon. Whole colon is going.

Doc thinks she has an ostomy for sure for a year. She suspects it will be permanent. They will examine the other layers of her colon after removal and decide then. Surgeon & Ostomy Nurse appointment June 4. We see the GI right after. Being in the hospital setting helps to have it all in one place. 

Now I guess it is finally time to check out all the appliances and stuff. This is the one area I have been ignoring. I was hoping I could skip learning the part.

Hubby did end up going to the appointment too. I was amazed at how calm he was and he asked good questions.  There may be hope for him yet.

Meds...sticking with what she is on for now. Entyvio is released on the 19th. Then the GI will start the fight of compassionate care for kids. She says it is at least 60 days away at minimum. Tacamonium was discussed as a brief option, but max of 3 months. That would mean coming off Simponi & that I don't want to do unless there is another biologic she can go to. Hard to go back on a biologic once you stop it. Hope Entyvio can move through Health Canada regulations quickly for kids.

Booking her with the child psycologist in hospital. D needs it. I think I might need someone too. I'm normally the strong one. I'm a basket case.


----------



## pdx

Oh, what a hard meeting.  I'm so sorry.  I would be a basket case too.  I know it's small consolation, but maybe with this surgery your daughter can go back to feeling like she did during her short time of remission last year, and be free of pain, and not running to the bathroom every minute, and just able to live her life again.  I know that doesn't make it easy for your daughter or family, though.  It's good that you are booking with the psychologist; this is a lot for a anyone to handle.  :ghug:


----------



## Pilgrim

:frown:

I know you were thinking it might be good to go to surgery to get some lasting relief for her, but I can't imagine how hard it is to go from thinking smaller resection to whole colon. 

Just thinking of you both. 

Hope there is a lot of wisdom from those parents that have been there.


----------



## Maya142

Thinking of you and D:ghug:. 

Hope she gets a very very very long remission from this surgery.
Glad she can stay on Simponi since it helped a little- hopefully it will work like MAGIC after the surgery.


----------



## DustyKat

Oh my goodness SupportiveMom, little wonder you are feeling the way you are! :ghug::ghug::ghug:

I so hope this surgery gives your lass long and lasting relief bless her. :heart: 

Thinking of you and sending you much luck, squishy hugs and healing thoughts your way. 

Dusty. xxx


----------



## Sascot

So sorry things are so stressful. Really hope the surgery works wonders and they can sort out the medications.


----------



## my little penguin

Lots of warm peaceful thoughts your way.
Hopefully things will finally calm down for her and you after this


----------



## Tesscorm

I was so sorry to read your post.   I wish the apptmt had had a better outcome.  :ghug:

And, as others have said, I do hope the meds and surgery will bring you all many years of remission!!

And do find someone to talk to yourself!  What you've been through over the past months/years has been overwhelming - I'm sure it would help you to have a person and place to vent.  Perhaps the hospital can provide you with some recommendations??

Hugs... :ghug:


----------



## SupportiveMom

The last few days gave us some good perspective. D is leaning on her best friend who has IBS & her mom is a nurse who has Crohns. I'm glad she has them. Hubby & I have been leaning on each other more than usual. We are pretty independent people and know it's time to lean on each other. A few days we were able to change our perspective to think of how life will get better after the colectomy after healing and getting used to the ileostomy. 

At the appointment Thursday we asked for a connection to another teen with an ostomy or a support group. The nurse & GI at the hospital clinic didn't know of a meeting and no one came to mind for D to connect to of her own age with an ostomy. Later I found out there was a meeting for 10-18 year Olds with Ostomy on the floor right above the IBD clinic! I found out too late so we have to wait for a meeting in July. Why is there not one place to go to know this stuff? Maybe this is my next mission, get all the meeting group info and fax it to every GI doc so they can post it, and share it. So frustrating, I'm in Toronto, MAJOR  north American city, think it is 4th or 5th largest in North America and I'm having to hunt for this stuff? Why do I need to search 10 different places? Thank goodness I am the type to keep looking.

This might become my new pet project.


----------



## lgpcarter

Got this article of Entyvio in kids in my inbox this morning: http://www.healio.com/gastroenterol...-shows-promise-in-pediatric-patients-with-ibd


----------



## SupportiveMom

Thanks. I will share it with the GI on june 4. After surgery I want to get her in remission as long as possible so meds are important!


----------



## SupportiveMom

Getting ancy about tomorrow's meeting (6/4). I can feel the tension in the house. The surgeon meeting is the one I have been drawing up questions. Really hoping it goes smoothly.

 I think its going to feel very real when the stoma nurse shows her the Ostomy bags and how they look on her. We were told to request a sample to wear around to get comfortable with it. Something new to learn!


----------



## Mehita

Thinking of you guys today...


----------



## Farmwife

Hugs and more hugs. I'll be thinking about you guys. Update when you can.


----------



## Mr chicken

Sending good vibes your way today


----------



## Tesscorm

Hope all goes well today. :ghug:


----------



## kimmidwife

Hope all goes smoothly! Sending good vibes and hugs your way!


----------



## pdx

Good luck today--thinking of you all.


----------



## SupportiveMom

Boy I felt like that went by in a blur. We had a lot to digest. Surgery is July 15. A few appointments before to do including her IBD therapist. We got a sample bag to try wearing to get used to it. 

No one cried the entire 3 appointments! We might get through this better than we thought.

2 stages of surgery though. They want to do the subtotal colectomy & leave the rectum, then go in 6 months later & see if they don't have to remove it. If she can keep it, then she stays with the 1 surgery.


----------



## Farmwife

Well I'm glad for the no tears but hope everything goes smoothly.:heart:


----------



## Pilgrim

Well, I'm tearing up. So there.


----------



## Maya142

Sending hugs and thinking of you and your brave girl :ghug:


----------



## kimmidwife

Very glad it went well! And glad you got through with no tears! I really am praying this is her miracle!


----------



## Sascot

Thinking of you, hope the surgery works wonders for longterm remission


----------



## Jmrogers4

Haven't been on as much lately so trying to catch up on how everyone is doing.  Glad appointment went well and hope surgery brings her some much needed relief.


----------



## SupportiveMom

Pre anesthesia appointment today. Think I cried for 1/2 of it. Even when you know this is the best choice it is still hard. It really sucks our kids have to deal with this. Us parents are quite a strong bunch. 

Still, I am scared out of my mind this is happening to my kid. How could someone wait 3 months for the surgery? 40 days from appt. to surgery is hard enough. We just have 3 weeks to go. It seems as if we are trying to squeeze all of summer in these 3 weeks.


----------



## Farmwife

I can't image what your going thru. 
Hugs to you and yours


----------



## Pilgrim

I tried to press the hug button ten times. Didn't work. Well, it worked the first time, but not the next 9.

I hope the weather holds out and there are lots of good memories of this summer both before and after surgery.


----------



## SupportiveMom

Thanks. I am grateful she is well enough to enjoy some summer. She is trying to fit in some swimming. Me, I'm getting her to fit in cleaning her room!


----------



## Maya142

Sending hugs and thinking of you. I hope she has the best few weeks before the surgery!!


----------



## Pilgrim

SupportiveMom said:


> Thanks. I am grateful she is well enough to enjoy some summer. She is trying to fit in some swimming. Me, I'm getting her to fit in cleaning her room!


You will end up cleaning for her when she's in the hospital.


----------



## Mehita

How did she do during the appt? So sorry you all have to go through this. I hate this disease so much.


----------



## Tesscorm

Good luck with the room cleaning!  :lol:

And, lots of hugs... I can't imagine how hard this is for D, you and your family. :ghug:


----------



## Mr chicken

Big hugs your way


----------



## Catherine

Hugs!!!!


----------



## Sascot

Thinking of you. Hope she enjoys the next 3 weeks


----------



## SupportiveMom

She has a good mask at appointments. She waits until she leaves them & cries. I told her no need to hold back but its like she is proving something to herself. She is happy about the morphine. Someone told her they don't give anything harder than Tylenol 3 for surgery and she knew that wouldn't be enough. She is worried about the pain most of all I think. 

I stay with her the entire time in hospital so if it isn't clean before it isn't getting done! Yesterday she convinced the boyfriend to help. I was shocked. He may be worth keeping for a bit!


----------



## Pilgrim

I remember one of my teen guys bringing the girlfriend over - and I asked _her_ to make_ him_ clean his room. It worked. I was sad when the relationship ended.

I'm glad she has a peer to help her through this emotional and stressful time. If he makes it through these rough patches - they may be seriously bonded. 

Sounds like the more facts she gets about her procedure the better.


----------



## theresad

I'm just so sorry to hear about your struggles - I can only imagine the pain you're feeling and my heart goes out to you and your daughter. I am praying that you both get some peace and respite after the surgery. This disease just completely sucks in the most unimaginable ways. All my best thoughts your way as you go through this.


----------



## Gmama

So sorry to hear your news. This disease totally sucks and waiting sucks too! I hope you are really able to make the most of it all. Sending loads of thoughts and prayers your way!


----------



## SupportiveMom

Last night the bestie & boyfriend were over and we were talking "game plan" for surgery day the night before, the day of, and the few following days after regarding visitors, who can be where the day of surgery, etc. I am impressed the boyfriend just wanted to know how he can help, when he can visit, and anything he can learn to make things easier. 

I don't want to scare off the boy, but learning about an ostomy, having major surgery is a lot for anyone at any age. How much do we share with him? Best to do as it comes, or dump a bunch of knowledge on him?


----------



## theresad

SupportiveMom - that's so impressive! If we're counting blessings at a time like this, I guess one of them has to be how lucky your daughter is to have such a good support system  

On the ostomy info, could you give him like three main pieces of info (the stuff that he needs to know, or you want him to know now), then maybe text him links to a few other resources for further reading? That could give him the chance to be prepared, but not overwhelmed all at once. You're right - it is a lot to take in. You're being very thoughtful and I'm sure both he and your daughter appreciates that alot!


----------



## Mehita

I think I might ask him what he already knows. I wouldn't be surprised if he's already watched YouTube and done his own research. Then, I'd just steer him to the trustworthy sites and steer clear of the personal (negative) blogs - if he wants more information.

How long has he been hanging around? I'm guessing even if the boyfriend bit doesn't last, your daughter will always have him as a friend.


----------



## SupportiveMom

The boyfriend has been a friend for a year. Her boyfriend for 3 months. So he knows what's happened the last year with her health but at a distance. Good idea with links & blogs. Over a year ago I watched some YouTube videos that scared the daylights out of me. Hope that isn't what he has seen!


----------



## kimmidwife

Maybe give him the links to some of the models who have shown off their ostomies and talked about it. There were two that I saw a while ago someone had posted it on another site. I am sure if you google it or search you tube you can find it. I agree about asking him what does he know already. It is great to have a supportive boyfriend. Caitlyn also has a wonderful and very supportive boyfriend.


----------



## SupportiveMom

We went for our final blood work, drew on the stoma spot, got our last bit of pre surgery questions answered yesterday. When sent down to blood work I had to take her surgery papers. They had on the paper reason for surgery: ulcerative colitis. Either her doctor is extremely stupid or it is wishful thinking. D just looked at it & laughed. It kind of pissed me off, but I know it doesn't change much. Just because she hasn't had inflammation in her small bowel in almost 2 years, but she still had it. That means Crohn's. Still glad surgeon thinks of this as a permanent surgery and won't recommend even considering a jpouch for 10 years. D would certainly be one of those that had issues I am sure of it if she rushed for a jpouch.


----------



## kimmidwife

Wishing it all goes smoothly and her recovery is quick!


----------



## Jmrogers4

Big virtual hugs and hand holding, Hoping for successful surgery and speedy recovery


----------



## SupportiveMom

Thought I would share a pic. Not a guarantee this is where it will end up, but this is what the plan is. She had written next to it "Go at it" but afterwards she felt stupid about it so rubbed it off. Hope the image shows up here. THis is the 1st time I put up a picture.


----------



## Farmwife

Awww she should have kept it.:thumleft:

I pray everything goes smoothly.
Update when you can.
When is the day off surgery?


----------



## lgpcarter

Ha! Think the surgeons would have gotten a kick out of that. I like her spunk. Been thinking of you guys. When is the surgery?


----------



## Tesscorm

Sending lots of hugs and good wishes!  :ghug:  Hope all goes smoothly and she recovers quickly. :ghug:


----------



## SupportiveMom

Wednesday is the date. 8 am at Sickkids. Arrival for 6 am. I live about a 40 minute drive or 1 hr subway/bus ride from the hospital. Glad I am staying downtown nearby, just a 10 minute streetcar ride. At that hour will opt for taxi I think. We are doing a girlie night tomorrow night downtown with her sister, aunt, & 2 friends. I hope it distracts her. She has been an angry young lady with a short temper today. Hard not to strangle her. PMS is also not helping. 

Oh I just realized she will be menstruating during surgery! Hope that won't complicate things.


----------



## pdx

Hope tomorrow evening is fun and distracting for all, and that the surgery goes well.  We'll be thinking of you and your daughter.


----------



## Maya142

Sending so much good luck!! Will be thinking of your girl :ghug:


----------



## theresad

Thoughts and prayers with you - enjoy girls night and keep us updated!


----------



## 24601

Thinking of you both! I have been an angry young lady going into surgeries too so I feel for you both! Also as regards to the menstruating at time of surgery just tell her nurses so they can inform the surgeons - best that they know where any unexplained blood is coming from. Also I've been told it's fine to use a tampon - just let them know, or you can go with nothing at all. Just thought I'd share as I know I felt embarrassed about asking what to do! In my experience the bleeding stopped post-op as I think the body just shuts down the unnecessary function.

Enjoy your girlie night! Hoping this will all be over for you very soon! :ghug:


----------



## Lady Organic

menstruations wont likely bother or they would have told you otherwise before. I'd just make sure not to wear tampon (edit after reading 24601 comment: I find it quite surprising that they would allow tampons, when they ask not to wear contact lenses and even make up for a colonoscopy! seems safer to me not to wear any kind of apparel that could be forgotten)  and I'd also tell the nurse about the menstruation for maybe better comfort. good luck!


----------



## SupportiveMom

I started searching after posting and it seems from what I found doctors say menstruating doesn't matter, & uou can where a tampon or not. I'm still asking either way. Guess the mandatory pregnancy test really isn't that important. I thought of asking the nurse to come back and freak her out, tell her she is pregnant, but I think she would kill me & not find the humor in that moment ( she is not sexually active). I am an evil mom.


----------



## 24601

Yep, I agree it seems a little surprising Lady Organic but that's def the advice I've been given and I think they want you to feel comfortable. I chose to go with nothing as I felt most comfortable knowing there was nothing to be forgotten...but obviously important that they are not surprised by unexpected blood!

While we're talking about girl specific surgery issues, I now always ask someone I trust to check the area around my urinary catheter after having some not so good nursing care with respect to that after my second surgery. Basically the day after surgery with my catheter still in the nurses who were washing me gave me a cloth to clean the area but I was barely mobile enough to reach - half standing by the bed being held up by the nurses but mainly collapsing. I felt as though they weren't prepared to wash me properly...which seems pretty surprising as I'm sure this is part of the job! Anyway by that night I could tell something felt badly wrong and got my mom to look. Everything was very stuck together and sore and it took her a good half an hour of gentle washing to get all the gunk removed and everything unstuck. Sorry if that's tmi but having learnt the hard way I now make sure someone I trust checks and would do the same for anyone I care about! No way do we need UTIs and more pain!


----------



## Pilgrim

I hope the girls night is so much fun for her. 

Are you sure you shouldn't have them change the reason for surgery on the paperwork? I would have an absolute fit if that was incorrect. 

No strangling. I can't imagine what is going on in her head. It has to be a lot of emotions and struggle and maybe some hope thrown in. I'd feel angry too. 

Sounds like you are doing an amazing job of supporting her. You come by your name honestly. My thoughts and prayers are with you there this week.


----------



## SupportiveMom

Pilgrim thank you for the kind words. 
In 3 years she has had every form of IBD. I think time will tell what she actually has, and I would be shocked if it is not crohns. In November of 2012 her MRE had inflammation in her esophagus & her terminal ilieum. It's great she hasn't had it there since May of 2013, but it was there, and by definition once there it's crohns. Just because the last 2 years has only shown inflammation in her colon doesn't make the past go away. Our 1st GI thought of it as the meds she is/has been on are working strong enough for her small bowel, just not strong enough for her large bowel. I pray after Wednesday & the colon is completely gone the drugs can keep crohns from coming back.

I think her current GI is overzealous & would love to prove the last GI wrong in diagnosis, like she made an error  (and this current GI is too / busy to read her 2 years of paperwork in depth). To our face she will never call D's disease UC. The MRE was done by her hospital, her tecnician. She went back to the original slides and looked back and said because of that she can't rule out her last GI made the right diagnosis. But when D responds stronger to drugs known to work best in UC it makes for some confusing results. This GI has also been MIA since our 1st surgical consult. No follow up appt. With her, nothing. She is literally 1 floor below the surgical department. I am glad the surgical team and staff have been so amazing. That department is what makes Sickkids have the reputation it does, and deserves.

Her surgeon believes after a few years D will present clearer with crohns once the colon is gone. That is why he doesn't want to perform a j pouch surgery, which is the next step if she had UC. In 3 years she moves over to the adult hospital. He said we shouldn't even think about it until then, & his recommendation is wait 10 years, or after children.Puberty wrecks havoc on our kids medically and takes a while for the body to regulate. I'd rather play it safe. Once you connect a jpouch and it has issues not solved by antibiotics & they reverse it  you don't get another chance.

So my early morning (cause I can't sleep) rant is summed up by it doesn't matter what from of IBD they call it anymore. It doesn't change her direction of care. The docs can guess at whatever. I don't care, we know what her next few years of treatment look like, and that is just fine by us. BTW I'm still calling it Crohn's Colitis to people that ask. I'm guessing in a few years I will just be calling it crohns again.


----------



## kimmidwife

Fingers crossed for an easy recovery.
 I second what 24601 said about making sure you clean the bottom area well since she has her period. You may want to ask for a peri bottle (you know the thing they give you after you have a baby) and you can use that on a bed pan to clean the area.


----------



## SupportiveMom

Thanks. We are just waiting now to meet with surgeon after check in. Surprisingly they said to leave the tampon in for surgery. I'm still mentioning it to the surgeon just in case. Now to hold the tears back while I go into the surgery room & wait until she falls asleep.


----------



## Tesscorm

Will be thinking of you and D today... :ghug:  How long is the surgery?


----------



## lgpcarter

Thinking of you today and looking forward to updates when you can. She will do great and is in amazing hands at Sick Kids.


----------



## SupportiveMom

Well they couldnt let me into the surgery room with her while she went to sleep. She took it real hard & we both started crying. Sitting in the waiting room started driving me crazy. I had to get out for a bit while we wait. So I'm wandering the streets of Toronto aimlessly. Wish the time would hurry up. I have until about 1 to wait the surgeon said. He suspects for sure 4.5 hrs. Glad he wants to be meticulous with her surgery both inside & out.


----------



## Mr chicken

They didn't make you stay in the waiting room
For any procedures we have to have one guardian or parent in the waiting room at all times regardless of surgery time length

Sending well wishes you way


----------



## DanceMom

We've never been required to wait in the waiting room.  We are given a pager where we receive updates and can freely travel the hospital - outdoor gardens, cafeteria, gift shop, etc.  I think sitting and waiting is the hardest, especially if you are alone.  Get some fresh air, some food, and know that you have a whole forum thinking about and praying for your girl.


----------



## Tesscorm

Wasn't surgery but when S had his scopes at dx (same hospital), they'd also told me I could leave - I stayed because it wasn't going to take very long, but they'd offered to take my cell and call me as soon as it was finished.


----------



## SupportiveMom

They have my cell if they need me. My husband is there now sleeping in a chair. ( worked midnight shift ended at 4 am) I think they know you go crazy sitting & waiting. Trying to prepare my head for all the tubes when I see her next. She gets her ng tube back along with a bladder drain & surgical drain. Ugh it is hard being a parent.


----------



## Farmwife

Just checking in.....
Hugs


----------



## Maya142

Thinking of you!


----------



## pdx

We're thinking of you and your daughter here too.


----------



## Jmrogers4

Checking in and thinking of you guys


----------



## crohnsinct

You guys have the entire globe praying for you!  :ghug:


----------



## SupportiveMom

You guys are amazing! Finally in our own room. She is sleeping on & off. Surgery went well, just at 4 hrs long. When she does talk and it doesn't sound like a medicated talk she says it feels strange. I'm just glad she gets to relax now. I even squeezed in a 1/2 hr sleep. Going to be some tough days ahead but that is short term. Seems strange she isn't going the bathroom all the time. Just glad she is ok. 

They did take a picture of her colon. It is GROSS!


----------



## pdx

Thanks for the update.  So glad to hear the surgery went well.  Hope her recovery goes smoothly and that you both get some good rest in the next few days.


----------



## 24601

So glad to hear that the surgery is over and she is back in her room. Hoping for a very smooth recovery and that all those tubes do their job to keep her rested and out of pain. I've found that's the best kind of strange after surgery when you suddenly think to yourself "hey this is weird, I'm not in that much pain". Hope she's still doing okay and you are both getting rest. Thinking of you both :ghug:


----------



## Mr chicken

Sending healing vibes her way and rest yours


----------



## Farmwife

So glad for the update.
Rest while you can.
More prayers and hugs heading your way!


----------



## Tesscorm

Glad it went well! I hope you both get some rest now and that she recovers smoothly and quickly.  Sending good wishes and prayers your and D's way! :ghug: :ghug:


----------



## SupportiveMom

SurpriseD they started her on vancomycin. Not sure why. Please do not let her get c diff! Antibiotics always cause her cdiff. She isn't waking to administer her morphine so I have to keep waking her or she will wake up in massive pain. She hasnt peed since 6 am so I hope she gets the urge soon! Finally feeling like I could sleep so think I will act while I can. 

Thanks for all the positive words. Tomorrow is going to be better!


----------



## Lady Organic

you could ask if probiotics could be useful and preventive with this antibiotic. I think probiotics need to be taken at least 2 hours apart from the antibiotics.


----------



## Maya142

My daughter was put on Vancomycin to treat CDiff. I wonder if it can cause CDiff?? No idea.
Hope D has a better day tomorrow and the pain is controlled :ghug:


----------



## SupportiveMom

Finally a little bowel awaking with the bag having a little gas in it. Have now confirmed she does really bad with oain. First bathroom trip was hard. Goal to start walking a bit today. Hope that moves things and she can get the NG tube out soon. A teen NPO is frustrating.


----------



## 24601

Glad to hear there's some gas production. Sorry she's having so much pain.

How's the walking going? Any fluids yet? I was so frustrated after my first surgery when they made me wait two days to have any fluids. With my later surgeries they didn't make me wait so long. Hoping that the gas production and bowel sounds will be enough for them to give the go ahead on fluids. I know it's such a relief to start drinking.

Have they explained the vancomycin?


----------



## theresad

i don't know why my post duplicated - sorry about that


----------



## theresad

So glad she (and mom) are through the tough part. My thoughts are with you and your daughter and hoping for a speedy and uneventful recovery, with every day just a little better than the last!!


----------



## CrohnsKidMom

Just reading your recent posts on this thread, supportivemom, and my heart goes out to you.  I hope your daughter has a smooth recovery and feels well really soon.


----------



## Mehita

Hope things are going well. Thinking of you!


----------



## kimmidwife

Hope things are going well! I was feeling very under the weather yesterday and never checked back to see your update. I am glad the surgery is over and she is on the road to recovery! Sending prayers for it to be fast and smooth!!!!


----------



## greypup

Thinking of you and sending you loads of healing prayers!


----------



## kimmidwife

Thinking of you guys this morning! Hope she is doing well!


----------



## SupportiveMom

Things are progressing as they should. NG tube went out yesterday. Real food today! Not as much pain today as yesterday. I am very glad. I have emptied out the bag once. I want her to empty it too & right now she doesn't even want to look at it. It will take some getting used to. She is in good spirits otherwise.


----------



## pdx

Thanks for the update.  Good to hear that things are progressing as planned, and that she can eat today.  Hope that you are getting some sleep too!


----------



## theresad

That's great news! Im sure this is an incredibly hard adjustment so every step forward is a good step and the rest comes in time. I'm glad all is progressing well post op and hope you're taking care of yourself a bit too mom  thinking of you.


----------



## Farmwife

It's a hard adjustment to look. 
It's not the same but even Grace's gtube was hard to look at. 
Sometimes it takes awhile to wrap your head around it! 

I'm glad it better today.


----------



## SupportiveMom

With talks of going home Monday D pushed it to be with friends, try walking, etc. She paid for it last night. She couldn't catch up to the pain meds finally working until about 2 am & then got some sleep. She emptied her bag on her own in the middle of the night by herself! She is so sweet letting me try to get sleep.

Emotions ran high last night. She was regretting getting the bag. Looks like she might be going through the grieving processing. Glad we see her therapist tomorrow before checkout.


----------



## CarolinAlaska

I'm sorry she is feeling that way.  I hope soon she is feeling so good that she is glad she did it.


----------



## Maya142

Way to go D for emptying it by herself! I'm sure it will just take some it time to get used to, it's such a huge adjustment. Hope you both can get home soon!


----------



## theresad

@supportive mom - i can only imagine the adjustment your daughter has to make. and you too. the therapist will help, and being home will also help. i hope you get home soon. all the best your way.


----------



## 24601

Sending hugs :ghug: Sorry to hear she was feeling so bad last night. FWIW I'm full of admiration for how D has handled this major life event and getting up and changing the bag herself in the middle of the night is amazing. D sounds very brave and I hope getting home soon helps :heart: :heart: :heart:


----------



## Tesscorm

Agree with above...  she's been quite brave and strong dealing with all that she's had to in the last few months/years.  And while the changes, the bag, etc. may take some time to deal with, I'm sure her strength will carry her through it.  She's lucky to have you with her, you've been as brave and strong in dealing with all these problems and I've no doubt you'll help her get through this adjustment.

I'm sure you've done all the reading and researching so I'm probably stating the obvious to you but, I've never read of anyone regretting their decision... only members saying how the surgery changed their lives for the better.  She will adjust to the bag and will soon be feeling so much better and enjoying the teen life she is meant to be enjoying!  

Lots of hugs... :ghug:


----------



## kimmidwife

I hope you guys are home. I am so glad she is progressing well and that is amazing that she emptied the bag herself already. Fingers crossed for her to keep on a fast track to healing and getting used to things. Hopefully she will quickly realize the benefits of not having to run to the toilet all the time. I have heard from others who had this surgery and they all said it was amazing for them.


----------



## Maya142

Hope D is doing well and gets to go home soon. She is so brave!
Sending hugs.


----------



## greypup

thinking of you and D and sending healing prayers your way. You're an amazing mama <3


----------



## SupportiveMom

Had to do an ultrasound & Xray. Thought she may have an obstruction. Things look clear nos, so back on food, and if things continue the right way we go home tomorrow. It will be great to get home! Fingers crossed.

Though it looks like she picked up a UTI while here. ugh...


----------



## kimmidwife

Glad no obstruction but UTIs do stink! Hope she is feeling better and goes home tomorrow!!!


----------



## pdx

Sorry about the UTI, but glad to hear that you will be heading home soon.  I will keep my fingers crossed too!


----------



## SupportiveMom

We are going home!!!!!!!


----------



## Sascot

Glad you're getting home, hope she adjusts well to the bag


----------



## kimmidwife

Awesome news!!!!praying for continued quick healing!!!


----------



## Farmwife

:dance:


----------



## SupportiveMom

Home...ah it is so great to be home! Friends and youth group surprised her and brought pizza & a movie. She had fun, tried not to laugh much because it hurt, but that was hard to do. So great to see her smiling again. 

She said she must have had a heavy colon, she lost 6 lbs in the hospital. Google said a colon weighs 5. Lol


----------



## Maya142

Glad she is home!! How is she adjusting to the bag?  Is the pain under control?

Hope she can make up the lost weight soon! I'm sure pizza will help


----------



## SupportiveMom

Rectum still hurts. They only took part of it, not all. Waiting for pathology to determine next steps if anything. She can empty the bag on her own now (which is good because it was starting to feel akward doing it with her sitting on the toilet at her age). She us still sore, but getting better. The home nurse comes on Saturday. I'm going to get her to learn to change it herself then I hope!


----------



## theresad

So happy to hear you're home and settling back in. Oh what a warm fuzzy feeling you get when your kids are smiling and laughing  I'm so glad she was able to relax and has such good support. Good luck passing the baton on the bag duties - she'll be a pro in no time. Hope you can relax and get some rest and relief for yourself after the long journey you just took. Thinking of you.


----------



## Tesscorm

So glad you're both home and she's working through her recovery!  That's so nice that her friends came, ditto above, I'm sure it was so nice to see her happy and smiling!

Sending wishes that all continues to be smooth sailing while she fully recovers! ;ghug:


----------



## CrohnsKidMom

Good news indeed!  Hope she has a smooth and speedy recovery!


----------



## kimmidwife

Glad to hear that she is doing so well!!!


----------



## Mr chicken

Good to hear things are moving forward


----------



## Sascot

Glad things are getting better


----------



## DustyKat

What an absolute champion your lass is SupportiveMom, bless her. :ghug: 

And what a worrying and difficult time for you. :hug: 

So fab to hear that you are home and settling back in. I hope with all my heart that all goes wonderfully and this proves to be a turning point for your girl. 

Thinking of you both. :heart: 
Dusty. xxx


----------



## Pilgrim

How did it go with the home nurse today?

Your daughter is incredibly brave. I hope as she heals up she starts to feel like superwoman.


----------



## SupportiveMom

By pure luck we got the same home care nurse she had over a year ago that went to her school & home when she was on EEN! When she called to say she was coming I was so excited! She is a wonderful nurse. All home care nurses should be like her. Only negative is she just does her own thing and not the easiest person to learn from, but then she has the attitude you should have her all the time. Glad the care is paid for by the government.


----------



## Gmama

How have you & D been the past few days? I hope you got to sleep for two days straight after all that you guys have been through! You are such a great mom:ghug: Hope all is moving forward & D is feeling better everyday!


----------



## SupportiveMom

It is hard to keep D down lately. I try & tell her she is barely 2 weeks post surgery & has to take things easy but it falls on deaf ears. 

She has been out skateboarding, downtown with friends, at the park, out to eat & eating foods like never before. Today she does her own bag change (with the stoma nurse watching). Her only complaint is waiting for me to order the opaque bags because we have so many clear ones.

She is getting a bit concerned going back to school & emptying there . Might have to work on that.


----------



## Farmwife

:rosette1: that's awesome!!! Well not that she's not listening to you:ybiggrin: but the fact that she wants to do all these things.

No advice on the school thing but pray she has a great year.


----------



## DanceMom

I'm glad she's doing so well! When A started IVIG the change was so dramatic and I remember having to tell her to calm down! Lol It is such a beautiful thing to see your child go from being fatigued and ill to happy and full of energy.


----------



## 24601

So happy to hear D is starting to enjoy good health and making the most of being free of her colon


----------



## Lady Organic

maybe there is a private toilet somewhere in the school reserved for the director or some staff she could use and be more comfortable.


----------



## Sascot

That's really great! Hope they can sort out something at school. So good she feels up to do all that!


----------



## Maya142

So glad to hear she is doing well!!


----------



## SupportiveMom

Thanks for the positive words everyone. 

I asked about private toilets before school let out. No go. They suggested she goes during class time so she doesn't get embarrassed. So basically they are advocating she misses class...At least that is her interpretation of it. 

Got to find that Pooporri. Anyone try that? That or its portable air freshener which doesn't help much


----------



## crohnsinct

Unacceptable!  

Is there a school nurse?  Here, the nurses' office always has a bathroom.  If not in the office very close by and it is a really nice staff bathroom.  

In the absence of a nurses' office then access to a staff restroom.


----------



## crohnsinct

P.S. we have Poopouri and it works great!  They even sell them in little sizes for your handbag.


----------



## Farmwife

Where do you buy the stuff?


----------



## Mr chicken

Same here they should let her use the staff bathroom 
If not nurses bathroom is always open
Even in elemtaey school Ds was permitted to use the staff bathroom
Only if he was bleeding did they want him to specifically use the nurse's bathroom
Otherwise it was up to him.


----------



## kimmidwife

Glad she is doing so well! Hoping they can help her with the bathroom issue!


----------



## crohnsinct

Pretty sure you can buy it online but I have seen it in Hallmark stores and Bed Bath and Beyond. 

Our GI gives them out in the goody bag of stuff you get when you receive the dx...CCFA literature, that comic book thing, purple rubber bracelet, bathroom access card etc.


----------



## Mehita

I second the school nurse's bathroom. Doesn't she need space to organize? Id think the school nurse's bathroom would be a tad cleaner too. And what if she needs help for some reason?


----------



## Mehita

Oh, I forgot... I vaguely remember watching a video a long time ago from a teenage girl who decorated her bags because she thought they were ugly. I don't think it was duct tape, but maybe some of the fancy stuff?


----------



## DustyKat

I’m so sorry to hear that the school is being obstructive SupportiveMom.  

Could the IBD/stoma nurse that is seeing her have a word with the school or perhaps someone from CCFA? 

Dusty. xxx


----------



## SupportiveMom

I'm prepping for the fight though they haven't given me trouble much yet, they were very dismissive at the end of the school year. Maybe because it is a next school year problem they didn't want to deal. 

I think I might ask Ostomy Toronto. Crohn's Colitis Canada doesn't do much of that but they should! Think I will ask the team about why that isn't part of the support & how to make that happen.


----------



## Jmrogers4

Yes jack has always had access to nurse bathroom, although he's rarely used it.  We've done the poopourri works great. I've also seen website where you can make your own, haven't tried that yet though.


----------



## pdx

How are things going?  I'm hoping that your daughter is feeling fully recovered from surgery.  Has she started school?  Hope that all is well.


----------



## Pilgrim

I wanted to send a note to your thread here to thank you for your work with Crohn's and Colitis Canada. 

I used the school form linked through your daughters story and it was a great help (I was able to modify it to suit a young child). The staff really appreciated having the information clearly noted on paper and they have been really understanding.

I think your daughter is extremely brave and I want both of you to know that it is a great comfort to me as a parent to read the stories of other youth dealing with the disease. Thanks for putting yourselves out there and sharing it all with others.

I hope everything is going well for her with school and adjusting to her new side kick. I find it shocking that the school is being so unhelpful. I hope that has changed or you have been able to exert some force of will there.


----------

