Sharing ups & downs of being a Crohn's caregiver

SupportiveMom to two teen girls - One with Crohn's disease who is advocating for IBD, The other who is IBD free, an amazing caregiver & GEM Project participant

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Colon, You've Got To Go - Facing It's Just a Bit Worse Than You Thought

A few posts ago I had such great news. After almost 3 years Dani ' s colon looked the best it has except for that fluke scope last October that didn't last. Disease limited to the sigmoid colon & rectum. In prep for our GI appointment last Thursday we discussed as a family Dani having a resection, what surgery could look like, and how that would affect daily life. Hubby, Dani and I were well prepared to meet with her nurse & GI. We were ready to cut it out. If her sister Sarah hadn't missed so much school as of late she would have come too. As a good GI should, Dani ' s doc discussed what options are left. We were hoping with Entyvio being approved in Canada and released May 19 Dani could potentially move to that before or after a resection. How quickly that idea faded when the GI said Takeda won't talk to anyone until May 19th, and then it's a push to see if they will even give it to kids. Since Entyvio has no approval for pediatrics it will be an uphill struggle. Earliest consideration would come 60-90 days and without hearing from the manufacturer it was a guess. So maybe it is a drug for Dani down the road...for now it's a no. So that leaves us with surgery. That's ok, it's what we as a family decided was best. Resection...sign her up, she is ready for relief. Not so fast. Resection is not on the table. Disease has been elsewhere. It probably is in the deeper layers where scopes can't see and only a dissection will find. It is full.colon.removal. Because of her Indeterminate / Crohn's / Ulcerative Colitis flip flopping of diagnosis, GI gave her a 25% chance she would get a j-pouch. Ileostomy here we come. We all left the appointment in tears (hubby included), a surgeon appointment in 2.5 weeks, and a follow up appointment with the child psycologist. I was supposed to go to work that afternoon. Instead Dani & hung out around Downtown Toronto. The best thing we could do is hang out together and lean on each other. The coming weeks I will do my normal reaching out to the IBD community for more answers. Thank goodness it's Digestive Disease Week Conference. Some of my favorite docs are there too. The new knowledge will distract me. Dani is spending the days the best way she can, forgetting about all of this and being a teen. She has a few core friends she talks to about her crohn's, including her sister. Times like these they put aside stupidity an support each other, even when that looks a lot like jokes and sarcasm. I think it's time I call my mom & sister...

[ibdsupportivmom]

The survival and proliferation of usually harmless Escherichia coli in the gut of inflammatory bowel disease patients may now be better understood, as researchers have defined a fundamental mechanism through which the bacteria can thrive during flare-ups.

I am officially grossed out! 

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[ibdsupportivmom]

The Battle - Taking Pills: 

Every teenager has to rebel. It is part of human nature.They need to find that autonomy that hopefully will catapult them into adulthood one day (crossing my fingers!). The thing I protested as a young teen was shoes. I fought pretty hard to get my first high heel shoes when I was in 7th grade. My mother finally reluctantly bought them and I wore them EVERYWHERE. I wore them to school, to the store, even bicycle riding! My middle school best friend gave me the nickname of Two Shoes. I recall many a fight about how I was ruining the shoes, ruining my arches of my feet, and that I looked ridiculous. I didn’t care. I thought I looked cool, I felt great and wore those shoes until the heels turned to little stubs wearing down even that metal piece that kept the heel attached to the shoe. 

Neither of my kids ever took an interest in heels, but Dani is the Imelda Marcos of running shoes (wonder where she got that?). Sarah protests curfew, always wanting to stay just a bit longer at a concert or a friend’s house. Dani protests her pills. 

Dani doesn’t protest the importance of her pills. She is old enough to understand how valuable they are to her health, especially when she is flaring & stuck back on prednisone. Imuran helps to keep those antibodies away while on Simponi & Prevacid helps control the acid reflux. Dani’s protest is taking them without being nagged to do so. Somewhere on this IBD path this is the battle we chose with each other. I ask “Did you take your pills?” and she always replies, no matter what time of day “Soon, or I’m about to”. How did this become our battle? 

Am I going to have to call her in university every day and ask her if she took her pills? What about her honeymoon...I can see it now calling some tropical resort and tipping some hotel clerk to make sure she took her pills. The pictures above was just one of an ongoing battle. She was supposed to take her pills before going out after school (Woo Hoo for having energy to go out!). Since I wasn't home I couldn't check to see if she took them. Too many times I have come home from work to see the pills still not taken.  I used technology to my advantage & made her photograph her taking her pills. Not my best parenting decision, but it certainly gave me piece of mind. And on days when your kid pushes you to the brink, I will take this as a small victory.

[ibdsupportivmom]

Growing Intestinal Epithelial Cells May Lead to Personalized IBD Therapies

Read About How Growing Intestinal Epithelial Cells May Lead to Personalized IBD Therapies.

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Mother's Day for Crohnie Caregivers

What do you get for the mom who always ensures you NEVER run out of toilet paper, who nags you about how you are feeling & if you took your meds today, who drops everything for your hospital stays & has your back even when we don’t agree with your choice? 

My inbox is flooded with Groupon deals on Mother’s Day ideas with flowers, spa days, & picture frames. I thought I’d make my own list of ideas. Moms feel free to share other ideas!

1. Tell us how you are doing before we ask you! We hate sounding like a nag (how many bathroom trips? How is your energy level? What did the doctor say? Are you keeping up with your meds?). You probably don’t want to hear us ask either. How about you share first? You know we are going to ask, we can’t help it. It’s part of the Mommy DNA. Ease our minds (hearing about how you are doing non-IBD related would be nice too!).

2. Do something before being asked to do it

This is more for the kids living at home. You know how many times you walked by those dishes in the sink? Clean them! The smelly trash, it is possible for you to empty it. How about the toilet, come on…give it a scrub (the toilet brush isn’t there for decoration!) Stepping up to save your mom some energy so she can find time to maybe relax before 11 pm would be great.

3. Take an interest in your mom’s hobby Yes we are people! We have our own interests and pursuits. Some of us lose sight of those in parenthood but help mom remember if there isn’t an obvious hobby she has. When you figure it out go join her in it. It may not be a hobby for you, but the opportunity to share our enjoyment without an eye roll or sigh is worth it’s weight in gold.

4. Cook (or order takeout!) IBD food restrictions vary. One day bread agrees with you, the next day it’s off your list for a bit. We try to keep up and make sure there is food to eat. Nothing feels as frustrating as making a meal thinking you have kept all these restrictions in mind only to find out those restrictions changed and now you can only eat the rice. We know this is beyond your control. Pick up a spatula and make a meal of us all that we can ALL eat. Cooking = House up in flames? Find a menu you can order something from.

5. Time You have heard it before, how time can pass you by. It seems like only a few years ago you were handed to us from the nurse in the delivery room. Where your life was just beginning and we had all the hope in the world for you and planned to keep you healthy and safe. Like John Lennon said to his son, “Life is just what happens to you, While your busy making other plans “. We know more than we’d like that it all happens in a blur and the moments we share carry on when we aren't together for good & for bad. Make the most of them and sit & talk, watch a movie, go on a walk, write her a letter & share it, anything. Just share your time.

Don’t forget, we still like flowers, jewelry, and other presents bought or handmade...

[ibdsupportivmom]

Last Sunday I had the privilege of attending my first Top Pledge Earner Brunch. Dani hosted a drive at her elementary school and had a pajama day last year and this is what put her over the top an a pledge earner. Any kid that wanted to wear pajamas donated $1. She raised over $400 and participated in education awareness about IBD in some of the classes. I couldn't have been a prouder mom than at that moment. The money raised on that day along with our fundraising page for gutsy walk helped her achieve top pledge earner status.

Out of pure luck, we happened to sit down with one of Dani’s idol in the IBD community, Jessica (http://uncoverostomy.org/). Maybe being a teen, or probably the frequent trips to the bathroom, Dani never built up the nerve to have a genuine talk with her besides “The eggs taste ok” or “Can you pass the water?” She did at least sit next to Justin, (https://crohnsknows.wordpress.com/) who helped Dani poke fun at me (a teen has to have fun right?). 

I found out later there were many IBD bloggers & social media advocates in the crowd (so bummed I missed Eric! http://www.veganostomy.ca/). I hope we can have a forum one day soon where we can connect in person. Crohn’s & Colitis needs more advocacy, more awareness & we are always stronger together! 

[ibdsupportivmom]

Oh Sigmoid you are such a pain in the A**!

At least we now know what to get rid of for surgery. Do I dare say how much better the colon looks? 2 years ago we would have been looking at a lot more to cut. Thank you Remicade, Humira, Simponi... one of you or maybe all of you saved most of the colon!

Image from the hospital scope notes that accompanied the imaging & biopsy report. X’s are where the biopsies are taken. 

[ibdsupportivmom]

Desperate Parents Can Do Desperate Things

Yesterday I took my daughter to get her colonoscopy & endoscopy at our children’s hospital. It is a place we know very well having our GI there and being there for many inpatient & outpatient procedures. We had to be there by 8 am, not a time most with IBD can handle without at least a few bathroom trips delaying arrival. 

Walking through the walkway to get to the elevators & GI floor we encountered a man running down the hall waving a homemade sign saying “SickKids is killing my kid!” and he was yelling this as he ran down the hallway. Both Dani & I looked at each other & knew we both felt  sorrow for him & his family, 

Beyond this father running down the hall we have no other information on him, his child or his family. I highly doubt any hospital including SickKids would ever do anything to harm a child. As most children’s hospitals do, patients at SickKids treat things from minor injuries to complex diseases and I have no idea where his kid falls into this spectrum. I am not here to pass judgement on the validity of his claim. As a parent I feel his anguish & frustration that his kid is not better. I understand his need to cry out for help when answers on making your kid better just don’t come. Nothing makes you feel more helpless than seeing a loved one sick and there is nothing you can do to make him/her better. 

It is so important to seek support when feeling this sense of hopelessness. I am very grateful for the Crohn’s Colitis Canada Toronto community I am part of and hope it continues to grow as our local chapter enters its third year this fall. I am grateful for my online pals that help me make sense of a poorly written report by a doc wrote. I am also grateful I can share my experience with others to help them navigate their life with IBD. Maybe these connections we share will help us from ever feeling as desperate as that man with the poster did. For this I have hope.

[ibdsupportivmom]

When do you accept that it is time for surgery? I was sharing with a friend who has Crohn’s that Dani was in remission for 4 months and we can’t keep going on this roller coaster like this. She said she should be lucky she had 4 months remission. As a kid she never had remission that long & only achieved 6 months of remission after her 21st birthday. 7 more years before we can breath longer than a few months? No way! This can’t be how IBDers have to live. I refuse to accept it. Advances in medicine should be preventing this & giving us better quality of life.

Dani is ready for surgery mentally. Bag or no bag, she knows she can manage anything else that happens, just not being tied to the toilet and in so much pain. Me, I worry the decision we make now she may regret when she is older. I have no crystal ball - wouldn't that be great to have that as a parent? I am just hoping we have enough guidance from the surgeon to make the best choice possible. Another scope in two weeks. I hope the prednisone doesn't clear up the inflammation so much in that time that it makes the decision harder to make. 

[ibdsupportivmom]

Connecting To Fellow Patients - Props to Crohn's and Colitis Canada

Sometimes I don’t take a step back and appreciate the connections I have made thanks to my child having this disease. Someone I have connected with at our Crohn’s & Colitis Canada chapter really captured how fortunate we all are to have those connections. Take a look at his blog in the link. I am appreciative every day for the connections I make here online & in person in this community and feel blessed to have such great connections! 

[ibdsupportivmom]

Great video for kids (& parents) when expecting an MRE. 

[ibdsupportivmom]

Delayed Growth in Children May Be a Sign of IBD, Penn State Hershey Children's Hospital Pediatricians Caution

Read about the call of attention from pediatricians at Penn State Hershey Children’s Hospital for undiagnosed inflammatory bowel diseases in children.

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Study Finds Link Between Inflammatory Bowel Disease, Neoplastic Lesions of the Uterine Cervix

Read more about Inflammatory Bowel Disease and Neoplastic Lesions of the Uterine Cervix.

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Arthritis vs. Arthralgia: What’s the Difference?

Joint pain thanks to IBD? But I am too young to feel this old! Is it Arthritis? Chances are its actually Arthralgia. Learn about the differences and similarities between these two common terms.

[ibdsupportivmom]

Sometimes it is best to hear straight from the teens themselves. Goof tips, and a realistic expectation of what life is like with an ostomy.

[ibdsupportivmom]

Nutrition in IBD - Last Night at the 7th Annual SickKids IBD Family Night there was a wealth of knowledge to be had! Always a topic on every person’s mind is nutrition. Dr. Nick Carman presented information on in depth research being done at SickKids. He mentioned some promising studies by Dr. Arie Levine, but was only able to give teasers as the studies are still under way. Until Sickkids posts on their YouTube Channel, here is a tease from a video featuring Dr. Levine.