Thank a caregiver!

Happy Thanksgiving 2015! This is by far my favorite holiday, I get to celebrate the day with family, food and the Thanksgiving Day Parade. I've always loved the parade but 2 years ago it took on more meaning as we got to watch our oldest son march in the 87th annual Macy's Parade. Bright and early that cold morning we found our spot along 59th Street and waited patiently for our band to make their way along the parade route. Recognizing our kids and directors march by was awesome after all those hours of practice leading up to that day.

Thanksgiving has become more commercialized over the years with all the early Christmas shopping (I personally consider this sacrilegious, but that's only my opinion) but November is also recognized as "Family Caregiver Month". Caregivers give so much of their time looking after their loved ones that they tend to put their own needs on the back burner, increasing their risk for chronic conditions of their own. This years theme is "R.E.S.P.I.T.E - Care for Caregivers", highlights the fact that by giving your caregivers a time-out to rest and take care of themselves, burnout will decrease and family relationships will strengthen. RESPITE isn't a luxury for caregivers, its a necessity to avoid burnout and prevent medical issues. Just as an ill family member can become depressed and tired of their condition, the caregiver can feel overwhelmed with dealing with doctor appointments, insurance & financial issues, taking care of the home and rest of the family that they forget about themselves. Here are some helpful hints to care for the caregiver in your life:

R - Rest & Relaxation
E - Energize
S - Sleep
P - Programs that can help
I - Imagination
T - Take 5
E - Exhale

As we head into the busy holiday season, take a few minutes to plan a gift of RESPITE to the caregivers you know, whether it's a family member, friend or neighbor taking care of a parent, spouse or child with complex medical issues. Take them shopping, give them a massage or mani/pedi gift card, provide care for their loved ones so they can get a check up, read a book or take a walk around the block, set up a schedule of meals so they don't have to worry about cooking everyday. Sometimes it's the small things that make the difference. By giving so much of themselves, caregivers can help their loved one stay home up to 3 times longer and stay out of hospitals and nursing care. Many caregivers won't ask for things for themselves so do it for them.

I am thankful for all those who have cared for me when I really needed it, their support allowed me to keep Living, Loving and Laughing but was also hard on them. I wish everyone a Happy Thanksgiving to enjoy the people they are with.

Michelle

You can find more ways to support a caregiver at these sites:
National Family Caregivers - http://nfca.typepad.com/nfc_month_2015/
ARCH National Respite Network - http://archrespite.org/home
Caregiver Action Network - http://www.caregiveraction.org/
ThriveRx Caregiver Support Webinar - https://attendee.gotowebinar.com/recording/1975709508217156865

Time for the dreaded scope....

Most people don't get their first colonoscopy until they turn 50 unless they have a history of colon cancer or are having gastrointestinal issues. I had my first sigmoidoscopy at the tender age of 17 in the ER, frightened to death since 1) I didn't know why I felt so bad and 2) I had no idea what a sigmoidoscopy was. That ER visit led to a week in the hospital with more testing and X-rays which gave me an initial diagnosis of Ulcerative Colitis and then further testing a few months later showed it was really Crohn's Disease. Everyone dreads the idea of a colonoscopy because frankly who wants something stuck up their rear end? But I want to tell you that the worst part is NOT the scope but the prep for it. A full day of a clear liquid diet is not fun (yum jello and broth all day!)  and then add a dose of Magnesium Citrate or Miralax on top of that. Once I had Castor Oil as a prep, let me say that was the worst ever, never again! Having had Crohn's for so long, scopes are a part of my life, good or bad, they are what they are, I need them periodically to make sure everything is okay.

So a few weeks ago, I wasn't surprised when my  GI suggested that have an ileoscopy and sigmoidoscopy just to make sure my meds are still working. I was expecting this since it's been 2 years since my last one and  both my surgeon and PCP have been asking when I was getting another one. This past Tuesday I spent 1/2 the day on a liquid diet (the upside of only having 79cm of small bowel and an ostomy!) followed by some Magnesium Citrate to clear things out. On Wednesday, my sister-in-law, Richelle, got the pleasure of taking me to my appointment although according to her it got her out of housework so all was good. We arrived at the scheduled time and waited a little longer than I expected to be called back. The nurses were very pleasant and only needed one stick to get my peripheral IV in. (I could let them use my port but I am very protective of it and and only a few people are allowed to touch it). While I was waiting the Dr came by to talk with me about my procedures; the sigmoidscopy to check on my remaining rectum and the ileoscopy to check on my small bowel. I have no problem with the regular -type scope but for some reason the thought of having a scope inserted into my stoma just creeps me out. By 10am I was in the procedure room and the very nice Anesthetist (ALWAYS be friendly to them, they are in control!) gave me a good mix of drugs to put me out. The meds stung as they went through my IV and the last thing I remember is shaking my hand to get it to stop and I was OUT! Forty-five minutes later I heard someone calling my name and I was in recovery with Richelle sitting next to me. The Dr came around and said the 6" of rectum looked good but the small bowel showed some areas of ulcers. He took biopsies of both areas and said the ulcers could be the Crohn's or a virus. Richelle took me home and fed me and then I took a good 2 hour nap. I felt sluggish all day but I expected that. 

Now I have to wait a week for the biopsy results to come back and am praying that the ulcer's are not my disease. Realistically I know the possibility of them being something else is small but since I am not having any disease symptoms, catching it early would allow me and my medical team to adjust my meds to keep things under control. I don't have much small bowel left to lose so I want to protect it as long as I can.

Many people delay having preventative scopes because of the perceived unpleasantness of them. Ask anyone that gets them regularly, they will tell you that the worst is the prep and the best part are the drugs to put you out!  If you have one scheduled and need a ride, call me, I will take you without hesitation. The "dreaded" colonoscopy can keep many of us Living, Loving and Laughing longer! 

Summer & our anniversary went by too quickly...

It's been awhile since I posted anything. Summer went by way to quickly and was uneventful, no major trips or vacations this year. The 2 younger boys had a short summer due to the schools changing their calendar around. My oldest packed up and moved to college, the mom in me is sad but excited for him at the same time. As usual once school starts our anniversary gets mixed in with all the back to school events. This year Mike and I celebrated our Silver anniversary this year, 25 years! What an accomplishment in this day and age!

It doesn't seem like it's been 25 years, time has gone so fast. We have had the usual ups and downs during our marriage, health, jobs and financial issues like most people. Crohn's was a part of my life before Mike came into the picture and he watched me go through a few flares before our wedding, so he knew what he was getting into. Things happened quickly when I needed surgery within a year of our wedding. We drove to the Cleveland Clinic for a second opinion and we were both surprised when the GI performed a sigmoidoscopy while Mike was in the room. So much for privacy! The surgery went went well and kept me in remission for a few more years when a second surgery was required. My surgeon at the time was concerned about having enough large bowel left to reconnect and said I might have a colostomy afterwards. The thought of having a colostomy at 27 scared me a lot, I perceived it as an "old persons thing" and thought it would be smelly and noticeable.  We still wanted to start a family but knew my health was an issue so I went ahead with the surgery. Even then Mike didn't balk at the idea of me having an ostomy, if it gave me my health back then he was all for it.

After my surgeries in 2010, I started to get more involved in social media groups for Crohn's, Short Bowel and ostomies, it amazed me how many people would post about spouses not being supportive of the health issues, ostomies and the stress involved with living with  chronic conditions. Some even posted that their spouse or significant other left or threatened to leave them if they had an ostomy. It shocks me that people look at the ostomy so superficially. Mike can't believe the posts I've read him either. He doesn't see the ostomy as a part of me, he just wants me by his side.

I firmly believe that I wouldn't be where I am without Mike by my side. He has been my biggest cheerleader, supporter and friend. He has encouraged and pushed me to get healthy so I can be the best mom and wife I can. He encourages me in my advocacy and desire to help others. Things haven't always been rosy but I wouldn't trade the last 25 years with Mike for anything in the world! He has kept me Living, Loving and Laughing (even through the tears) for 25 years and I look forward to many more years with him by my side!

Mike and I last fall.

All my boys! The ones I live for!

Alive thanks to HPN!

Everyone has a cause or causes that are close to their heart. Some of the more common awareness weeks or months you see are  Breast Cancer, Autism, Heart diease, Diabetes and Multiple Sclerosis. I myself have done bike rides and walks over the years to support many different causes. But in the 5+ years since my bowel resection that left me with very little small bowel and an ileostomy, my passion is to help those with Short Bowel Syndrome, TPN Dependency and ostomies feel like they are not alone in coming to terms with the changes in their life and how to cope..

Every year the first week of August is HPN Awareness week to raise awareness for those on Home Parenteral Nutrition (HPN) also known as TPN (Total Parenteral Nutrition). In the 1960's after watcing several patients die after succesful bowel surgery, Dr, Stanley Dudrick began working on an idea of how to feed those who couldn't eat by mouth. He developed a nutrition compound that could be infused through a vein and raised beagle puppies for 287 days on TPN. That led to trying it on 6 patients successfully in 1966. Since then thousands of people have used HPN to survive and live, newborns, childrend and adults included. There have been children that have grown up on Dr. Dudrick's invention. 

I know that I would not be where I am today without living on TPN for 2.5 years. During those early years, I was unable to eat enough calories to recover from surgery, gain weight or strength to live. I owe my life to Dr. Dudrick, the early beagles and all the early patients on TPN. Without all them, we would not have the medical & scientific advances to help people with intestinal failure to keep living. 

Thank you Dr. Dudrick for keeping me and many others alive to Live, Love and Laugh again!

Dr. Dudrick and one of his beagles.

Need Help Please! FDA changes could impact those on TPN

Sorry I haven't blogged in a while (really long time!) bu it's been summer, kids are home and we have been busy. There really should be no excuse to not blog so I apologize for that but I am asking for your help. Anyone who reads my blog knows that 5 1/2 years ago, I had a major surgery that resulted in Short Bowel Syndrome, which required the need for Total Parenteral Nutrition (TPN). TPN gave me the calories my body couldn't absorb naturally from food. TPN is made by compounding pharmacies that have special licencing, pharmacists and dietitian's that work with Physicians to make sure the formulation each patient receives is finely tuned for them. I was fortunate that my surgeon recommended ThriveRx as my infusion company, I have received personalized and superior care. ThriveRx and other infusion companies have pharmacies across the country. Many patients have their TPN shipped to them because they live in a different state than where their pharmacy is located or have travel needs for work, leisure or more importantly, medical visits. 

The FDA has a proposal to change the way infusion pharmacies ship their products across state lines, severely limiting the ability of patients to choose the best pharmacy for their needs, the ability to travel or received the best quality of care.The FDA's proposal is called the Memorandum of Understanding (MOU) and the FDA is accepting comments until Monday July 20th about how this proposal would affect people on TPN. If you know of anyone that uses a compounding pharmacy for TPN or other medications, please submit your comment as to how this would affect your lives. The FDA is wanting to learn more and now is your time to sahre your experience. Below is the link to submit your comment and more information about the MOU.

By making your voices heard, you can help others continue to Live, Love and Laugh while on TPN.

Submit your comment: http://www.regulations.gov/#!documentDetail;D=FDA-2014-N-1459-0001

You can find more information at:

FDA:  http://www.regulations.gov/#!documentDetail;D=FDA-2014-N-1459-0001

NHIA:http://www.nhia.org/resource/legislative/CompoundingMOUCommentInstructions. cfm

Sample of a consumer statement: http://www.oley.org/Sample-well-written-Statement.html

Safety in an emergency..a Strap Wrap!

When emergencies happen, seconds count. When I used to cycle, I wore a RoadID dog tag that had my name and emergency contact information. The RoadID made me feel comfortable knowing that if anything every happened when I was on the road by myself (like that ever happened...lol), EMS would know who I was and who to contact. My husband and son both have one also. Before Alex had his drivers license, I used to make him wear it when I felt uncomfortable with large groups of people (like amusement parks or something like that.) I still have that my original dog tag and the information has changed much, I just don't wear it cycling anymore. 

Not long after I started on TPN, I was given a "Strap Wrap" to carry around with me. It holds all my important medical information about Doctors, emergency contacts, medical conditions and medicines.The wrap can go around my purse handle, seat belt or TPN  Backpack and the bright red is visible to EMS responders. It's small enough to fit in small purses but color makes it easy to spot. ThriveRx supplies them to anyone on TPN and will also update the information as you need it. It's a great way to stay safe in an emergency.

The grandmother of the cute little guy in the picture below came up with the idea of the Strap Wrap to keep her grandson safe with hemophilia safe during an accident.

If you know of anyone that would like one, please send me a message and I will get you one. Keeping people safe to Live, Love and Laugh longer is always a good thing!

United We Stand - World IBD Day 2015

Today is World IBD day to raise awareness to those who suffer from Crohn's and Ulcerative  Colitis. People used to suffer from these diseases in silence but now more people are sharing and discussing their diseases and suffering with those around them. Some poeple rarely have flares while others suffer almost every day.  This year's global theme is "United We Stand" so those around the world how that they don't suffer alone. People were asked to share a 20 second vidoe describing how UC or Crohn's has affected them (sorry I forgot to do this). These powerful videos are from patients, spouses, parents, children, friends, doctors, nurses and care-givers from all over the world. Check out the links below of all the videos that were submitted.

I remember when I was diagnosed and knew no one else that had Crohn's Disease, I have met many interesting people in support groups, both online and in person that fight to cure Croh's and Ulcerative Colitis. No one has to suffer alone anymore. 

I encourage everyone to wear the IBD color of Purple today or any shirt that represents and raises awareness for IBD. I do not have much purple clothing so I am wearing my "Ask me abut my Crohn's Disease" t-shirr. and I have already had someone ask me about it! 

Wear your purple today to show your support for Wolrd IBD Day so those that are fighting daily can find a way to Live, Love and Laugh without pain and suffering.

#worldibdday #ibd #Crohs #ccfra

http://www.worldibdday.org/https://www.youtube.com/channel/UC8m3RC4S2Rmr4DfOdf8kKvQ

http://www.worldibdday.org/

Vacation time is almost here...

It's hard to believe that it's already May and summer is just around the corner. The boys are ready for school to be done so they can head to the beach with their grandparents. Many people are planning their vacation plans for places near and far. For those on TPN, traveling can be scary and worrisome.  Besides planning where, when and how to go on vacation, you have to plan out your supplies and work with your infusion company to get your supplies where you want them when you want them there. If you wan to go on a cruise or overseas, there are more things to take into consideration since each country has different rules about infusion therapy. Flying also has it's problems about what you can take on the plane and the easiest ways to get through TSA security checkpoints.

To help those on infusion therapy enjoy their vacations, ThriveRx is hosting a webinar, Traveling with TPN, on Wednesday May 13th at 1pm est with tips to make traveling easier. One of the best things about ThriveRx's webinars are that if you are you can't make the scheduled time, once you register a recorded link will be sent to you to watch at your convenience. You can register at this link:

https://attendee.gotowebinar.com/register/4291744990952749314

We haven't figured out what our plans are for the summer but I know that my fluids and supplies will be there when I arrive thanks to ThriveRx...now if they could only pack all my clothes then everything would be perfect! 

I hope everyone gets to take some R&R this summer to recharge their batteries so they can keep on Living, Loving and Laughing! 

It''s been awhile....

I have this mental list of things to do that sometimes get written down to make things easier to track. Well writing blog posts needs to be a the top of all my lists in BIG CAPITAL LETTERS so I don't keep pushing it farther down the list. Writing posts are not a chore, but finding the time to do it can be hard,  if I could figure out how to write while in the shower or driving, you would see a ton of posts! So I apologize for how long it's been since my last post but promise to be better about it.

Since my last post, I have missed writing about webinars, awareness days/weeks/months, conferences and most importantly how I live with SBS. The other day I posted on Facebook about a campaign to stop the CDC from running an anti-smoking ad that featured a lady who got colo-rectal cancer from smoking which resulted in surgery to remove a portion of her intestines and was left with an ostomy. She states that she has "hole in her abdomen to collect waste" and was afraid of the smell and of it coming off at the wrong times. While I understand what the CDC is trying to do but I feel the way the message is presented perpetuates the negative connotation of having an ostomy. 

After that FB post, I was contacted by an old friend who has recently undergone surgery which resulted in a colostomy. After exchanging stories and offering support, I realized that by not posting for such a long time I was unable to reach others with SBS, ostomies or fed by IV nutrition to offer support. If I can help one person feel less alone with any medical challenge, them this blog is worth it. When I was faced with the unknown world of living with SBS, an ileostomy and TPN, meeting someone who had been through the same things and had been living a functional life, made my future that more bright. I hope I can be that bright light for someone else so they may continue to Live, Love& Laugh! 

Happy 5th Anniversary to me!

I can't believe that 5 years ago my life changed forever! I expected the scheduled exploratory surgery to result in a "simple" bowel resection like I had had in the past. Short Bowel Syndrome, an ileostomy and TPN were not figured into that equation. As I look back on the past 5 years, I can't believe how far I have come. Family and friends rallied around us in the early days to make sure that someone was with me when I was too weak to be by myself, watching the boys, organizing meals for all my guys or just keeping Mike company in the hospital. 

Whenever I remind Mike of this anniversary, I get the "look" that he would rather not remember it. February 3, 2010 was different for me than it was for him. I just remember waiting for surgery and waking 2 days later surrounded by family in the ICU. I can't imagine what Mike and our family went through in the waiting room during the surgery. Mike has told me that it was very intense especially when my surgeon finally came out and gave them the news of how bad things were but that I was still alive and fighting. The next several months were hard on all of us but slowly I turned a corner and got stronger and started to resume some activities.

5 years later, life is good, the boys are growing and thriving, Mike and I are getting older together. Connecting with others in similar situations makes me feel fulfilled more than I can ever have imagined. I wouldn't be here without the skills of Dr. L, who saved my life for which I can never thank him enough. Without the support and knowledge of ThriveRx, we would never have gotten through those early days when TPN was very confusing but then to teach me the correct things to eat & drink to help me get off TPN. 

We will not be having a big party or anything but today will always be a special day on my calendar because it has allowed me to keep Living, Loving and Laughing with everyone I meet!

I live for these guys! The keep me laughing! Love them tons!

Education update - ENFIt Transition for tube feeding

One of my goals for this blog includes education on nutrition support. As you know, I was on Total Parenteral Nutrition for 2.5 years until I was weaned off. However in the first several weeks I was briefly on j-tube feedings. For this type of this type of feedings, lines can be placed in your stomach, intestines or run through your nose to either your stomach or intestines to deliver much needed nutrition. Depending on your diagnosis or condition, a person can be fed through a tube or central line lines or both. Like TPN, tube feed formulas are infused by a pump attached to the tube. 

In 2015, the is going to be a global standardization in the connection system of tube feeds to reduce the possibility of misconnections. The ENFit transition will begin in the first quarter with transition sets being distributed to the US, Canada and Puerto Rico. ThriveRx is hosting a webinar called ENFit Transitions: The Why, What, When and How this will Impact You on Thursday, January 29th at 1-2pm est. 

You can register at http://www.thriverx.net/  If you are unable to make the designated time, make sure you register and a copy of the webinar will be emailed to you to watch at your convenience.

You can also find more information about tube feedings at  http://www.feedingtubeawareness.com/

With any medical condition, awareness needs to be raised so others understand what patients are going through, February 8-14 is Feeding Tube Awareness Week so spread the work so all those on Tube feeds can keep Living, Laughing and Loving along with all of us.

Crohn's as a disability...Please sign!

Happy New Year! I can't believe that it's 2015 already, it seems like it just turned the year 2000 and all the excitement that brought and in reality that was 15 years ago! It's amazing how things change in a few short years!

If you would have asked me 5, 10 or 15 years ago if Crohn's Disease was a disability under Social Security I probably would have said no. For me, my flares have always been fairly easy to treat and manageable. I rarely missed work due to actual flares, mostly I missed a day here or there due to the occasional bowel obstruction. Imuran kept my symptoms and flares under control. I was able to have 3 children, exercise, work full-time and live a normal life. I never needed to consider the possibility of applying for Social Security Disability until my bowel obstruction 5 years radically changed my life.

My contact with other Crohn's patients was meeting someone by chance or having a friend or family member tell me about a friend of a friend that had just been diagnosed or was having major problems. Occasionally I would speak with someone that needed support. For me, Crohn's was just this thing I had that occasionally interrupted my life, no big deal.

However, there are many Crohn's and Ulcerative Colitis patients that are so sick, they are unable to work. There are days when you physically shouldn't be getting out of bed but you have to in order to support yourself and your family. For people that have to do this, it only makes things worse by causing you to be even sicker. For others finding the right medication is next to impossible so they never feel better. Finally others stop working altogether, losing income and insurance benefits. Crohn's & Ulcerative Colitis are rarely fatal but can cause other life threatening issues like surgery, malabsortion issues, anemia, depression and much else. Medications used to treat the diseases have another list of side effects that can also result in long term complications. Check out this article for more information:
http://www.huffingtonpost.com/rebecca-kaplan/social-security-administr_b_6404952.html

Both diseases are listed as disabilities under Social Security but the approval process can be long and arduous. Denial the first time around is very common resulting in appealing and the added strain of continuing to work while very ill. Friends that I have met through online support groups are trying to petition Congress to add Crohn's and Ulcerative Colitis to the Compassionate Allowance list. The Compassionate Allowance list allows those with specific diseases to have their claims processed faster when applying for Social Security or Disability benefits. Once a year Congress adds diseases to the list, the White House must urge the Social Security Administration to convene a hearing. My friends have started a petition to get Crohn's and UC added to the list. They need 100,000 signatures in 30 days.  I am asking each of you to sign the link below and forward it to others so that those who need the benefits can receive them.

I am probably not the only one you know with one of these diseases so please sign it so the really sick ones can begin to Live, Love and Laugh with out the added financial pressure on them.

http://wh.gov/igOWD