Ok, I’m back. Sorry if my hiatus caused you any discomfort, distress, rash or disappointment. Pressing on…..
The State of the Kira is like the State of the Union. We’re checking in, catching you up, sharing the good life. Kira’s health is great. She is still in remission (from ulcerative colitis/inflammatory bowel disease) and the effects of the steroids have worn off, finally. We take long forays into nature without fear of distance from the toilet. We take long trips in the car without mapping each possible restroom stop. We play more. She understands now that we try to be careful about what she eats. Sometimes she will say, “I’m not having dessert after dinner because we had a party at school (and subsequent party food).” We do the blood work and visit with the pediatric gastroenterologist every three months and high-five when we’re done. My friends ask often about her health and I happily answer with the good news.
Yesterday Kira told me how happy she was to be well. Sometimes we talk about what it’s like when she is sick. She told her little brother that one time she slept from morning until dark, because she was so tired. A few days ago she said a classmate at school told her Kira still had her baby face, not a young girl’s face. I first reminded Kira that her face is beautiful, and that she had taken medicine (steroids) for a while that had caused her face to fill out like a baby’s. I also reminded her that her classmate doesn’t know that about her and probably wouldn’t point it out if she knew about Kira’s chronic illness.
So my perspective on things still gets screwy sometimes. I forget what’s important and get impatient or short-tempered about little things. When we are well, everything is rosy and sometimes, taken for granted. But I’m learning. I’m managing my perspective. I work to remember what’s important. I pull my head out of the sand and keep my eye on the prize: the health and happiness of my children.
In love and light, Jessica.
As a mom, I want to know everything about anything related to the health and wellness, or illness, of my children. I know as a parent or caregiver, you get that. Medical topics and discussions can go way over my head pretty quickly even though I am college educated. I have longed for quick references to terms, concepts, treatments, and such to stay with the conversations with Kira’s doctors or the pharmacist or while reading articles relating to inflammatory bowel disease. I’m going to create a quick reference here, for you AND me, regarding the classes of medications commonly prescribed for the treatment of different forms of IBD, not just ulcerative colitis. Here’s the list:
5-Aminosalicylates or 5-ASA: These medications have long been in use for those with IBD. They are like aspirin or an anti-inflammatory medicine that targets the colon. Usually prescribed to drive the disease into remission in mild cases or for maintaining remission in mild to moderate cases. Potentially useful in cases of both Crohn’s or UC. Kira’s first maintenance medication was Asacol, one of the 5-ASAs. I wasn’t thrilled with it.
Corticosteroids: These medications are most often used to induce remission. They work systemically, or throughout the body, and are therefore helpful in those with Crohn’s or UC. They rapidly bring the disease to remission in most cases, and work for most with the disease. They are well-known for their adverse side effects. These drugs must be tapered off very slowly, they cannot be stopped abruptly. Kira took Prednisone, one of the corticosteroids, when she got very sick, to induce remission. The side effects were awful, but it worked well.
Immunomodulators: These medications directly affect the autoimmune process of those with IBD. They are used with patients affected by UC or Crohn’s. Kira takes 6-MP, or 6-mercaptopurine, for remission maintenance. It seems to be working quite well with few side effects. This class of drugs can improve the effectiveness of the corticosteroids and potentially lead to a decrease in or discontinuation of the use of the corticosteroids.
Biologics: Given by injections or by IV, biologics are made of a protein that can create a dramatic response in the reduction of symptomology. Used for patients with difficult to treat Crohn’s or UC, this class may garner results (induce remission) when other classes of drugs have failed. One subset class is called anti-tumor necrosis factor alpha, or anti-TNF antibody.
Antibiotics: These drugs also play a role in the care and treatment of those with IBD. In those with this disease, the body’s immune system does not function properly and can upset the balance of healthy, necessary bacteria in the gut. These drugs can assist in getting the right bacteria in the right ratios helping to reduce inflammation in the intestine.
Ok, so I’m not a doctor or pharmacist, but I do my research. This list is only meant for quick reference, a reminder of the discussions you’ll have with doctors. I hope it helps you, it reinforces what I have learned.
In love and light.
My tendency used to be to stick my head in the sand when my girl Kira was healthy and panic when she was sick. To combat that I started this blog and jumped into the Crohn’s and Colitis Foundation of America‘s Take Steps Walk 2011 with only three weeks to fundraise and put a team together. With the help of our wonderful friends and family we were able to raise over $1000 to donate to CCFA. A bunch of these terrific people also agreed to walk with us the day of the event to support Kira. I contacted the walk coordinator prior to the event to see if I could do more. Kayln, the coordinator, was located out of state, but I could hear her heart through the phone. She asked if I could help with registration the day of the event and I gladly volunteered.
On that day I showed up early to help at a local park. Nice place, not too hot, bathrooms readily available (important for this group). I finally met Kayln and some other volunteers, parents of a man with Crohn’s disease, and felt like I had met “my people”. I was impressed by their commitment and compassion, the fullness of their hearts. I helped with registration and saw groups wearing tee-shirts. I saw that some of the shirts were in memorium of loved ones with IBD who had succumbed to the disease. I looked closely into the faces of all the walkers and saw something familiar. Maybe it was about putting family first. Maybe it was a keen awareness of the value of life, or of good health. Maybe it was appreciating every good day. Whatever it was, it felt good being there with them.
Kira had more than a dozen people there to walk with her and show her their support. She had a wonderful time, we all did. There were kids’ activities, refreshments and a beautiful sunset. Kayln and the locals told me this year was a poor showing due to a lack of publicity for the event. Well, nothing like a little bad news to get me behind something. I believe the event will enjoy better support and publicity next year, I’m sure of it! I’m up to the challenge to do more. I’m impressed with CCFA. Our team is Kira’s Hope. Who’s with me?! Huah!!!
Kira’s first relapse came in the first grade and began just after the Christmas break. A stomach bug went around, and then around our family, Kira got it and it triggered her relapse. Her symptoms started to appear slowly and she continued to attend school until it got worse. I found some information about the disease for Kira’s teacher and met with her once Kira started missing days of school. Although I got around to this a bit late, the school met with me to discuss options for Kira’s schooling during this flare up of her disease. The principal, teacher and I met, as well as Kira’s sweet aunt (support!), to discuss where we were and where we needed to go. Kira was there, but mostly in the bathroom. I began the meeting by crying, so grateful for the support. So we talked about each subject, what work absolutely had to be done and which work would flesh out the lessons for her, but was not absolutely required. A plan was set, homework was done, and even though Kira missed about five WEEKS of first grade, she passed. This is a private school and I am grateful for every teacher, administrator, aide, and employee there, because they worked with us and our specific needs.
Public schools have strict rules and guidelines that govern the specifics of absences and how they must be reported, excused and so forth. All states are different as well, but I know Arizona has a provision for, or way of handling, the absences of a chronically ill child specifically. Kira’s pediatric gastroenterologist is well versed in providing documentation (something like “Doctor’s statement of chronic illness”) to schools (without violating patient rights to privacy) verifying his patient’s illness, the complications of the disease and the potential impact on the child’s school attendance. This helps your child’s doctor advocate for your child. I had no idea this existed before and, frankly, didn’t give a hoot about whether or not she could go to school, only if I could keep her out of the hospital. Well, that’s not good long-term planning on my part. So, learn from my experience, check out this possibility and the requirements of your child’s school before you need it for you and yours. And don’t forget, keep a record of all this stuff for you.
With love and light, Jessica
First-Ever Crohn’s and Colitis Awareness Week:
“Thanks to CCFA’s advocacy efforts, including the invaluable help of our advocates, the week of December 1-7 has been designated as the very first Crohn’s and Colitis Awareness Week. The Senate passed Resolution 199 in order to encourage all Americans to join in the effort to find cures for Crohn’s and colitis, help raise awareness, and support research.” ~CCFA website
I haven’t talked about them yet, but the CCFA, or Crohn’s and Colitis Foundation of America rocks! Check them out, raise awareness, share some information this week. Raise YOUR awareness. Excellent resource, more to come…..
Ok, so I was raised in a good home with a registered nurse for a mom and a United States Army lieutenant colonel for a dad. Prized virtues taught in my family of origin were love and service to others. I’ve turned out to be loving, caring and kind and the best friend when someone needs anything; very generous in anyone’s time of need. I was taught to be strong and self-reliant. I didn’t learn anything about the fine art of asking for help, assistance or support. When Kira was diagnosed with ulcerative colitis, I initially had no idea the help and support I’d need or to what extent I’d need it.
For Kira, at her age, she was all about Mommy providing her the support she needed when she had a flare up and I’m all about providing support. I slept with her, went to the bathroom with her at all hours of the night and talked to her, I took her to the couch and back to bed and worried about her diet, her school absences, her diminishing weight, neglecting the needs of her little brother and on and on and on. Oh, and I worked full time with an average of five hours of overtime a week. I never would have survived without the help of my husband. Whenever she would let him help, he would. He did A LOT to reduce the burden on me. Other family members and loved ones would offer help and try to anticipate my needs, which I responded to by crying. I didn’t know what was going on then, but now I do. I thought I was being weak and was so grateful for and relieved by the offers of support and the assistance provided without my asking. Was I weak? Hell no, I had an elephant on my plate. Sometimes, everyone needs help and support, especially when caring for a child with a chronic illness.
Learn to ask for help. You don’t have to bear the lion’s portion of the demands this disease puts on a family. Being the primary caregiver is one thing, doing it all yourself is another thing entirely. Everyone who wants to help, should help. Don’t you feel wonderful when you get to help others? Don’t deny that feeling to others, give it to them! Let auntie watch a movie with your ill child while you go for a walk or spend time giving attention to your other children. Let your father pick up the new load of toilet paper or a meal so you don’t have to go out or cook. Ask your best friend to pick up the homework at school and bring it to you. Anyone who offers help, wants to help. Practice asking those folks for help, they’ll make it easy on you. Even the strongest of us need a little help from our friends sometimes.
And now we have a support team called Kira’s Hope, but more on that later…
Tracking the details of your child’s illness is paramount for continuity of care, proper treatment and well, you won’t remember if you don’t write it down, trust me. Kira was diagnosed with ulcerative colitis about nineteen months ago. So much has happened since then, it’s a blur. Medication changes, weight changes, dosage changes, doctor’s recommendations, food issues, frequency of bowel movements, increases or decreases in symptoms, blood draws, test results, and on and on and on. Keep a record. It is very important.
I didn’t start out so well. I want you to start out well. Get a notebook and just write down anything that happens, you don’t know what might be pertinent yet. Just do it chronologically. Keep paperwork in there, and test results. I take notes when I get consultation with Kira’s doctor over the phone. Date it and keep it with your notes. You will do your own research, print out the stuff you find interesting and put it in your book. Recipes and alternative therapies. Keep medication data, that comes with the prescriptions. Keep financial records for health savings accounts or health insurance or whatever. Anything and everything.
All your friends and loved ones will ask what the doctor said, what’s the next step, etc. I draw a blank because when Kira is sick I’m so exhausted and scared I can’t remember anything. Write it down in your book. Decorate it. Make it pretty. Put your child’s photo in it. Whatever makes you happy and draws you into it to document these things. These are very important details about your child’s health and treatment. You will be a better advocate with these records. You will not regret this ever. You may regret not doing it.
With love and light, Jessica
Ulcerative colitis and other forms of inflammatory bowel disease go in cycles of wellness and sickness, remission and relapse. Every single person’s disease flare up will “look”, or present itself, differently. The symptoms will vary, the progression may be fast or slow. I can only share our experience. My seven-year old has UC. I’m her mom.
So, for Kira it starts out as tummy aches and seems like a stomach bug. She “doesn’t feel well”, her tummy aches affect her appetite. It comes and goes in the beginning. A child this age likes to go potty mostly alone. She didn’t know that what was going on for her was different from those with normal, healthy digestion. The disease, or this flare up, presents with pain and diarrhea, intermittently. Then urgency: she runs to the restroom like something bad is chasing her. She knocks us all down to get there. She has embarrassing accidents. Then comes frequency of elimination, perhaps. Kira runs to the bathroom ALL the TIME! Goodness girl, we just went to the restroom! I get short with her for dragging me to every yucky public restroom over and over again. She passes blood and this alarms her. Then I get invited into the bathroom and whatever she passes smells awful and for goodness sakes, that’s a lot of blood in the toilet. Thus far we have abdominal pain, urgency, frequency, blood and pus (cannot see it, but you sure can smell it). She’s up in the middle of the night, and so are you. Everyone’s exhausted. Oh, and her appetite has all but disappeared.
This is a child, she is now anemic. Kira is brave, she gets blood drawn almost weekly. She learns to swallow pills better than I. She is out of energy, too tired to ride the new bike she got for her birthday. She only goes from the bed to the bathroom and back. She has lost many pounds and won’t eat anymore. She misses weeks of school, you miss many days of work. (FMLA, read up on that). Now you are more than welcome in the bathroom, in fact, you read books in there, tell stories, try not to gag. You hold a paper bowl under her bottom, while she sits on the toilet, to get stool samples for analysis. You wonder, terrified, if this time she’ll end up in the hospital with feeding tubes and blood transfusions. You pray a lot, if that’s your thing. You wish you could take on this thing, spare your child. Please God, why the child? Give it to me instead.
Keep going, it’ll pass. What doesn’t kill you makes you stronger, right?
With love and light, Jessica
Any meaningful conversation about inflammatory bowel disease, ulcerative colitis or Crohn disease (used to be Crohn’s) involves details about one’s digestive tract, their bowel movements, their bathroom frequency and so on. Not a popular topic. Not glamorous. Not beautiful like “SAVE THE TATAS!” Everyone likes breasts and doesn’t want to see them go. There’s nothing gross about discussing them. Pink is a fun color for an easily embraceable cause. But when you bring up poop, feces, rectal bleeding, smelly pus and stool sample testing, everyone wants to change the subject or walk away. It’s impolite or something. I know, I didn’t want to hear it either, before Kira got sick. People with IBD and similar digestive issues must talk about these things with their doctors, nurses, other medical personnel and loved ones. These folks not only must endure procedures and treatments, abdominal pain, illness and embarrassing moments, but then actually tell others using words we’re not supposed to say.
Now I find myself trying to speak of it matter of factly, with Kira and all the members of her treatment team and her family and loved ones. I’m trying to model for Kira, and others, that it’s okay to discuss it, in frank terms, with those interested in helping those who are ill to achieve remission, feel understood, and loved. So I ask Kira, did you poop? What time did you poop? How many times? Did it hurt? Was it watery? Was there blood? Did it smell really bad? How is your tummy? How is your appetite? How is your energy level? Children have a more difficult time, I think, with describing where it hurts, what they ate when, is it dull or sharp pain, what sort of pain it is. Adults have had more experience with life, physical pain, and words to describe how they feel and therefore can monitor their symptoms/illness a bit more easily. This has been a challenge, in terms of getting specific details about her pains and illness, but her pediatric gastroenterologist is helping me. My goal is to make Kira comfortable with the discussion so that she will get proper treatment for her illness. We have a long road and I’m trying to pave it nice and smooth, right from the start.
So practice getting over the shock of discussing these terms, before you need to use them. Desensitize yourself. Say poop forty times really loud in your home all by yourself. Sing a song about BMs. And your child needs your help with this. Come up with words your child feels most comfortable saying. Write a poop poem together. What words do you use with your child? How do you communicate the information that needs to be shared?
Tagsadvocate anemia bowel diseases caregiver support CCFA children chronic illness in children Colonoscopy continuity of care crohn's disease digestive issues digestive system disorders Endoscopy flare up IBD medication primary caregiver record keeping relapse remission Specific Carbohydrate Diet support support team symptoms of colitis symptoms of IBD treatment treatment team UC ulcerative colitis