After a long absence - It's HPN Awareness time again!

Hi Everyone,

It's been a year since I've posted 😧 and for that I am sorry. Life had been busy with many things (good and bad) that have went on and blogging just wasn't at the top of my list. So I am going to use Home Parenteral Awareness Month to kick start my blogging again. Home Parenteral Nutrition is IV nutrition given intravenously to those who can't absorb food orally for one medical reason or another. The goal of HPN awareness week is to raise awareness and educate others on the need for HPN.

Most of my friends and associates know the back story of why I have Short Bowel Syndrome,  needed TPN for several years and now require long term IV hydration to avoid dehydration. But for those of you that don't I will give you the shortened version. In 1985 I was diagnosed with Crohn's Disease and over the next 25 years I had several flares resulting in surgeries that drastically reduced the amount of large bowel I had left to less than 10% but was able to function normally, raise our 3 wonderful sons with my husband of 25+ years, work full-time and enjoy a great life. For someone with a chronic disease such as mine, flares, obstructions, medications, hospitalizations and surgeries are some of the things that we deal with on a daily basis. By the end of 2009, I was experiencing periodic obstructions that would clear up in about 24 hours as well as other minor symptoms (fever, pain, etc) that I would ignore or blame on other things.  On a Wednesday morning in late January 2010 started out like any other but by lunchtime a blockage came on more quickly than any other I had experienced before. I went home and tried to gut it out on my own as usual but by the next morning I knew I had to call my GI and head to the hospital. I spent the next week with an NG tube down my throat, on pain meds and being tested to see if we could determine what was going on. On Saturday morning, the attending GI came in and advised me that I needed an PICC line and Total Parenteral Nutrition (TPN) because I was malnourished and wanted to "beef" me up for my upcoming surgery. My sister, Angie, was with me during visit the GI consult and my subsequent freak out about his recommendation. I knew very little about TPN, how it was infused, central lines much less living with it but I gave my consent figuring that after surgery I would no longer need it and could get back to my real life. Wednesday morning was the day of my scheduled surgery but I woke up with the worst pain and stomach distension of my life (including childbirth and kidney stones!). Two days later I woke up in the ICU with an jejunostomy, enteral feeds (tube feeds through my remaining small bowel) and Total Parenteral Nutrition for life. 

Over the past 7 years, I have been able to wean off TPN and stay off for 5 years but remain dependent on IV hydration because my remaining small bowel doesn't absorb enough fluids to keep me properly hydrated. My Crohn's is no longer in remission but is considered "mildly active" so I am on 2 medications to help keep it under control. My son's have grown from small children to teenagers and young men while Mike and I have celebrated 25+ years of marriage.  I enjoy spending time with my family and friends and reaching out to others who I can share my experiences with and make them feel less alone.  I no longer try to picture how Mike and the boys would survive without me but relish in the times we are together enjoying each others company. Without TPN, I might not have had the last 7 years to Live, Love and Laugh with all those around me.

Want a bracelet to show your support this week and all year? Send me a message and I will get one out to you! 

#TPNstrong #HPNawarenessweek #HPNAwareness

August is HPN & SBS Awareness month!

Hello Everyone,

I'm sorry that it has been so long since my last post, life got busy and I keep putting it off.  August is as good a time as any to write a post because it also happens to be Home Parenteral Nutrition (TPN) and Short Bowel Syndrome (SBS) Awareness Month.  Over 5 years ago if you had mentioned either of things needing awareness, my response would have been "Yeah, okay" and not bothered to ask to many questions. But since my diagnosis with SBS and need for TPN I have learned more than I wanted to about both topics. 

Short Bowel Syndrome is exactly what it sounds like. To be diagnosed with SBS, a person only has about 2/3rd of small intestine of a normal person. Most SBS'ers also have problems with malabsorption, diarrhea, hydration and fatigue. SBS is caused by many factors like birth defects, Crohn's Disease, injury, radiation enteritis after chemotherapy, surgery and blood clots. Since each part of the small bowel is responsible for absorbing different things the amount and area of small bowel a person has affects how much food and fluids they are able to absorb to live. Most people have about 600cm (about 20ft) that they are born with, I only have 79cm or 2.5ft. I am able to live without nutrition supplementation but require daily hydration infusions to avoid dehydration. I know of others that have the same about of small bowel and require daily TPN infusion to stay healthy.  Each one of us is different in all aspects of our lives and our intestines are no different.

Some people with SBS require the need for HPN or TPN (home or total parenteral nutrition) to provide the nutrition their body needs to live. TPN was created by Dr. Stanley Dudrick as a way to feed people intravenously when they are unable to eat naturally. Just like SBS there are many reasons for needing TPN such as congenital defects, gastroparesis, and mitochondrial disease. My first infusion of TPN was in the hospital was several days before my surgery that resulted in SBS, the GI wanted to “beef me up” before the surgery since I hadn’t been eating. Little did I know was that infusion would be the first of many in the hospital and then at home. On the first evening at home I received multiple boxes from ThriveRx which held all the supplies I needed for TPN and tube feeding infusions. Talk about overwhelming! Over six years later I am not longer on TPN but still require daily hydration that uses many of the same supplies that TPN does – pumps, tubing, saline flushes, port-a-cathater dressing changes etc.

So it’s fitting that SBS & TPN have the same Awareness Months since they go pretty much go hand in hand. In the 6+ years since I’ve had TPN, my life has changed dramatically. I went from fully healthy to deaths door and back to a “new normal”, I have watched my boys grow 6 years older and celebrate 25+ years of marriage with my husband (who is also my nurse on sometimes). Lately, I’ve been reflecting on my life and where it has gone, never would I have predicted that I would get a sick as I did, stop working and figure out who I was all over again. The end result is that I am happy with my life and where is headed. I interact with many people in similar situations and feel that I have made a difference in their lives. My work as an advocate for ThriveRx is more meaning full than any of my past jobs. SBS and TPN are not ideal ways to live but without both in my life, I would be as happy and content as I feel. Every day that I can Live, Love and Laugh with those I love around me or those that need to feel less alone is an awesome day for me!

@ThriveRx #SBS #SurvivingSBS

Check out the cool video the Oley Foundation has put together for HPN awareness week (I even know a few of of the people in it!)

https://youtu.be/Gj4yX3GBM10

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