Taking a Break from Caring

“People tell you to keep your ‘courage’ up. But the time for courage is when she was sick, when I took care of her and saw her suffering, her sadness, and when I had to conceal my tears. Constantly one had to make a decision, put on a mask and that was courage.” -Roland Barthes 

It can be overwhelming and even a little scary to leave your loved ones in the hands of complete strangers. Even leaving a person with PSP (or any debilitating illness), in the hands of family or loved ones who do not provide daily care can be somewhat nerve-wracking. But, without breaks caregivers are at risk for burnout, increased stress, and fatigue.  In fact, when caregivers are studies determined that they experience a 23% higher level of stress hormones than non caregivers.

Negative Impact of Stress on the Caregiver

Stress negatively impacts our thoughts, feelings, and behaviors. For example, WebMD notes that increased stress is linked to higher incidents of alcohol use and abuse, sleep disturbances, obesity, high blood pressure, heart disease, and diabetes. Even though we can feel guilty leaving our loved one in someone else’s care, it is critical to take breaks when we are able to.  Without these breaks not only are we at risk for the above-mentioned health impacts but also, caregiver burnout can lead to increased impatience with our loved one.

Taking a Break from Caregiving

Respite care is an invaluable resource which caregivers can utilize for a break. While some people find that twenty-four hour or week-long respite care in a facility is the best choice for a loved one- even finding one afternoon a week can be enough to reduce some of the fatigue and stress associated with being a caregiver. There are several options for respite care. First, family and friends are often willing to provide a few hours of care. Second, Medicaid, Medicare, and other insurances will usually cover a few hours of in-home care time.  The ARCH National Respite Network offers a comprehensive list of resources for finding for, paying for, and utilizing respite.

Walking Away

Once an alternative care provider is in place, the challenge becomes walking away. When you are the primary or even secondary caregiver, it can be very challenging to let go and give yourself the time away. I still remember the feelings of powerlessness I felt whenever I had to arrange for someone else to provide care for Mom. I constantly wondered how it was going?  Was Mom happy? Was she getting her needs met? After Mom asked for and went to the nursing home, my sister and I called the facility way more often than we needed to.

The first morning Mom was in the nursing home I had extreme difficulty letting go, I didn’t know if they were helping her in the way she preferred, I was anxious about her inability to communicate her preferences, I was scared that the staff wouldn’t be patient or nice to her. Eventually, I made a binder of Mom’s preferences and needs that she can use to communicate with people on the days where she is not able to clearly talk. The binder combined with other assisted communication devices and the fact that they now know her has helped me to let go. When Mom was home, talking with and explaining her care to new caregivers allowed me to feel more confident in their ability to assist her.

Resource

One of the things that helped me to let go and take breaks was the knowledge that the person taking care of mom knew her routines and preferences. During the years of in-home care, my Dad would leave notes for the aides, and we would call at times. I talked about creating a worksheet and document about Mom’s needs, but, time was never on my side. The following is a worksheet that I wish I had developed for us to use when we left Mom in someone’s care: Caregiving Break- Worksheet  (PDF Printable Version). 

Caregiving Break- Worksheet

 

Advertisements

Hold On Pain Ends

“Hope is the thing with feathers That perches in the Soul” -Emily Dickinson 

When faced with hopeless situations it can be tempting to give up. In those moments, an acronym for hope comes to my mind: Hang On Pain Ends. When I was growing up one of the pieces of advice, my Mom often gave me was, “don’t make a permanent choice in response to a temporary situation.” In moments of despair, profound grief, and well hopelessness it can be tempting to throw in the towel and give up. But, it is precisely in those moments when sometimes all one has to do is hold on.

Hold On

Holding on for me means doing the best I can with the situation in front of me. Some days, the best I can is merely showering, eating three meals, and not entirely losing my shit. Other days, the best I can is being present for the people in my life and giving back to the universe around me. When life happens, and I have to confront a hopeless situation it is the latter, not the former that sets in. But, in the confrontation of hopelessness, simply putting one foot in the front of the other can be enough.

There is a reason the saying, “it is always darkest before dawn” is a cliche. From states of hopelessness can come great joy and beauty. But, in our journey to the other side of pain, we have to hold on and face the pain.

Pain Ends

Think back to the last time your heart was broken, eventually with time, distance, and contemplation the pain left. Pain heals, ends, and changes. The worst pain we are experiencing today will eventually end. One of my favorite stories comes from an alcoholic in recovery that I know. For this person, we will call him Joe, every day for over a year he was miserable sober. Not unhappy, not discontent, straight-up miserable. Then suddenly, one day, he wasn’t miserable. He was so shocked he called both his twelve-step sponsor and his professional therapist, he just had to check and ask what he was feeling. Joe had no idea when his misery would end. All he knew was that every day he was absolutely miserable. But, he had hope that someday maybe it would get better, so he held on and eventually after months of not giving up Joe was no longer miserable. This is not to say that some misery came back from time to time. But, as Joe recounts those time became less and less and less until eventually one day he simply couldn’t remember the last time he had felt miserable.

For me, HOPE is the acknowledgment that eventually pain ends (even if just for a moment), and healing is possible.

HOPE

Splenda Might Cause Crohn’s Disease Inflammation

“Splenda might have pro-inflammatory implications only if consumers have susceptibility to CD, potentially aggravating the severity of symptoms and flare-ups, which would be in agreement with observations reported by IBD patients” –Alex Rodrigues-Palacios and colleagues

It is no secret that people with IBD manage complex and shifting diets depending on their personal symptoms and disease state. But, new evidence suggests that all patient’s who suffer from Crohn’s disease might want to consider avoiding Splenda. A recent press release from Case Western Reserve, says that a recent study by researchers found that “the artificial sweetener sucralose, known by the brand name Splenda, worsens gut inflammation in mice with Crohn’s disease, but had no substantive effect on those without the condition.” In other words, the mice with Crohn’s had worse inflammation after the consumption of Splenda while the mice without Crohn’s had no significant inflammatory changes.

Why Might Splenda Increase Inflammation?

The research found two reasons for the link between Splenda and increased inflammation in the mice with Crohn’s.

  1. Splenda created increased growth of E. Coli which lead to increased bacterial penetration in them mice with Crohn’s disease.
  2. Splenda increased myeloperoxidase (an enzyme in white blood cells which kills microorganisms) activities in the mice with Crohn’s Disease.

What these two reasons together mean is that the E. Coli increased the myeloperoxidase activities as the mice’s bodies attempted to fight off the invasion. The pro-inflammatory disposition of people with Crohn’s disease resulted in the increased myeloperoxidase activity which resulted in inflammation and symptoms. As the study’s lead author Alex Rodrigues-Palacios, DVM, MSc, DVSc, Ph.D. notes “this study demonstrates that the sweetener induces changes in gut bacteria and gut wall immune cell reactivity, which could result in inflammation or disease flare-ups in susceptible people.”

Alternatives to Splenda

For patients with IBD natural sweeteners might be a safer alternative than Splenda. Healthline points out that Stevia, Erythritol, Xylitol, and Yacon Syrup are alternatives to Splenda and sugar. But, Erythritol, Xylitol, and Yacon Syrup can all cause digestive problems. Therefore, for patients with Crohn’s disease, colitis, and other gastrointestinal disorders the best bet might be Stevia or natural sweeteners such as honey, maple syrup, molasses, and coconut sugar.

The Study

You can Click on the link to access the full text of the study, The Artificial Sweetener Splenda Promotes Gut Proteobacteria, Dysbiosis, and Myeloperoxidase Reactivity in Crohn’s Disease–Like Ileitis

Further Reading

Letting Go

 “Being deeply loved by someone gives you strength, while loving someone deeply gives you courage.” – Lao Tzu

Today, I want to write about what PSP has given our family.

After my mom’s diagnosis with PSP my sister, father, and I became her primary caregivers. With us and help from a local agency, we followed Mom’s advanced directive and DNR to a T. Even to the point that my sister (Kate) and I advocated for and fought for her right to pursue physician-assisted suicide. As mom has progressed, she has become trapped in her body. She has lost the ability to talk freely, to eat foods she wants, to walk, to move on her own, to see…the list goes on and on. My mom and those that love her have been grieving all of these losses as they come for years. PSP is horrible beyond imagination. But, PSP has also given our family the knowledge of what is truly important.

One weekend we believed that Mom was going to die. Not a drill, not an adverse reaction to medicines, or choking on something and being revived, or even aspiration pneumonia. Rather, the END in all capitals. On Saturday, we were given two options. Option one: Send mom from the nursing home to the hospital for iv antibiotic treatment and life-saving interventions. Option two: Allow Mom to take off her non-rebreather and allow her to die. Mom had always been very clear with her wishes, and she had prepared an advanced directive. The advanced directive and Mom’s wishes were no hospitalization and no antibiotics. But, despite the lack of speech and losses of physical abilities Mom’s mind has remained intact. So, we wanted to double check what she want. Thus, I found myself being the one to ask.

On Saturday, I sat on her bed with her and held her hand in mine. I explained her options to her. Then I said “Ok Mom, squeeze my hand if you want to go to the hospital.” She did not squeeze. Then I said “Ok Mom, squeeze my hand if you want to stay here.” She did not squeeze. So to check that she was with me and understanding I said “ok Mom squeeze my hand if PSP still sucks.” She squeezed. A while later she was able to indicate that she did not want to go the hospital. So, my Dad, Kate, and I called everyone else. My sister from New York City arrived late Saturday night. We all agreed on Sunday morning if Mom wanted to remove her oxygen then that was what we would do.

Throughout the night Saturday, Mom had an uncontrolled fever, and she kept trying to remove the oxygen. When I arrived early Sunday morning, she continued to try to remove the Oxygen. My Dad said, “hang on Debbie, wait for everyone else.” He looked at me and said, “I promised her when this time came we would not drag it out.” So, I called my sisters and said get our brother and come now she is taking off the oxygen. I let Mom’s siblings know where we were at and I prepared myself to be present.

I sat with Mom after she removed the non-rebreather. Unlike my sisters, I had not yet been able to tell Mom what she meant to me. It was just too big, too hard, too sad. But on Sunday morning as I sat with her- just me and her and Dad and as she struggled to breath I couldn’t help the tears from falling anyway so I said to her, “Mom this sucks, and I love you.” And as I cried, she reached her hand up and brushed away my tears, and she pulled me into her and held me as I sobbed and I said everything I could possibly say. “Thank you for being my Mommy.” Ever the mom- as she lay dying she comforted me. By the end of the day, Mom was still with us. As I write this, Mom is still with us.

But, I learned something entirely critical this past weekend. I learned more about love that I thought was even possible. In all of the reflecting, I have done I have concluded that the most significant gift my Mom and Dad have ever given me has been the power to love completely, unconditionally, and without abandon.  To my siblings, Dad, and I, Mom is our entire world. We don’t want to lose her at 58, and honestly, if she were 108, we would still not want to lose her. But, love is sitting with someone and respecting whatever wish they have even when every part of your body wants to call 911 and get an ambulance. True love, is letting someone go however it is they want to go.

During this journey with PSP, love has manifested itself in a million ways. Love was a road trip Kate and Mom took to NYC as one of Mom’s bucket list items. Love was a son lying in bed with his Mom and listening to music. Love was helping Mom shower, hand feeding her when she can’t do it herself, suctioning her mouth when it is full of junk, washing her hair, holding her hand, and making really dumb jokes cause they make her smile. It is all love, showing up and being present. But, the greatest act of love that I have ever seen was Sunday morning when Kate, Emily, Luke, Dad, and I watched Mom take off her oxygen with the belief that her doing so would result in her death. This journey is not yet over. Who knows what horrific event will come our way next, but, what I do know is that like every other challenge we all will meet it with the unconditional love that Mom instilled in each and every one of us.

Mom is Stuck, the Phone, and Friendly’s

“There is no such thing as a good call at 7 AM. It’s been my experience that all calls between the hours of 11 PM and 9 AM are disaster calls” -Janet Evanovich

I was standing outside of Friendly’s restaurant in Greenfield MA when I got the Facebook message: “Mom is stuck.” I had no idea what “mom is stuck” meant…is mom stuck in her wheelchair, stuck on an idea, stuck in a rut? So, even though I was supposed to be on a date with my partner who admittedly I had been neglecting recently- a dying mom will do that, I called my sister. Standing outside of Friendly’s, the car full of Christmas decorations, in the cold December evening I learned what “stuck” meant.

Apparently, since Dad had been home mom had been unable to move, talk, or do anything. Kate and I both hoped that the stuck would be temporary, but we prepared ourselves for not just in case. Dad had called Hospice and apparently this was okay as long as she was breathing normally which she was. So, with nothing else to be done, I went and had Friendly’s. I ordered a turkey Supermelt with French fries, and we split a Reese’s Peanut Butter Cup sundae for dessert. It was absolutely delicious, and I didn’t cry inside the restaurant once. But, the focus of the conservation was on Mom and stuck. I wondered out loud if this was it, was this her new norm? Would she come back? If not what would we do? I remained focused on Mom being stuck for the remainder of the evening and while I did not cry inside of Friendly’s once I did cry before I went into Friendly’s, driving home on 91, and once when we got home. PSP sucks like that- I don’t want my entire life to be wrapped up in PSP, and I know it takes a toll on every single relationship I have. I know my partner wanted us to be ordinary 30-somethings getting ready for Christmas, going out for dinner, talking about work, school, and our holiday plans, but again I drove and cried, and I was so focused on what “stuck” might look like.

As was our new normal, I messaged Kate a lot that night as we sat by and waited on standby and when the next morning Mom woke up “unstuck” we celebrated this small victory over PSP. As the months wore on, the “mom is stuck” message would be repeated. In fact, “Mom is stuck” just became a normal part of the interactions between Kate, Dad, Luke, and I. We all learned that stuck would happen and that she would unstick, and maybe someday she would not unstick. But, all that we could and can do is what we had done since she started falling- wait and see and take it one day at a time, that powerless feeling that is just a part of PSP.

Everything in my life over the past two years has been impacted and shaped by the backdrop of “Mom is dying.” This dinner at Friendly’s and “Mom is stuck” was not unlike any other outing I have taken since her diagnosis. My phone remains on all the time, and I wait.

I wait for the message from Kate, the call from Dad, when she was home it was the calls from RAVNAH and now the occasional call from the nursing home. The phone and I have a complicated relationship. For example, when I am relaxing at home or even in bed with my phone in another room when the phone rings or pings both my partner and I go running. I want the phone to be somewhere else, and I want not to have to jump whenever I hear it, yet, I can’t not. Especially when Mom was home, we were on constant alert, with constant anxiety, and I was tethered to my phone. The phone is often the bearer of some new horror of life-changing/interrupting thing that just can’t wait. So, I manage the phone in between normal everyday life- just because my mom is dying does not mean the world stops (even on those days I wish it did).

Fatigue and I

“When we are tired, everything seems so very much worse” -Jane Green

The other day I woke up with negative spoons. For some Crohn’s patients, my reference to spoons is an all too clear reminder of Christine Miserandino’s article, “The Spoon Theory” written about her journey with Lupus. Miserandino’s story of spoons is her attempt to explain to her non-sick friend what living with Lupus is like. In the story, Miserandino compares her daily journey to spoons. In this compelling story, Miserandino says that people without illness have unlimited spoons to do whatever they wish with while those of us who have illness have a limited amount of spoons with which to navigate daily life. I absolutely hate, detest, loathe, and can’t stand when I have limited or negative spoons. For me, it is the absolute worse part of managing illness and one that I would much rather do without.

In completing research for this post and reading about fatigue and IBD, I became increasingly agitated and pissed off the best solutions to deal with fatigue are 1. Manage IBD, 2. Check for Anemia, 3. Manage psychological symptoms, 4. Improve the quality of sleep, and 5. Investigate medication side-effects as a potential for causing fatigue. While it is important that people with IBD pay attention to all four of the aforementioned recommendations, as someone who deals with persistent and at times debilitating fatigue, I will say that none of them have done much to alleviate mine.

The reason why fatigue makes me so angry is that it is the one Crohn’s symptom that I cannot push through. It is the one Crohn’s symptom that stops me in my tracks. I live in with daily pain, and I have learned how to work through the pain. I can have a partial bowel obstruction and still function as a participating member of society. However, when fatigue hits there is absolutely nothing I can do to make it go away besides stop, and the last thing I want to do is stop. For me, having to cancel plans, not do something I am looking forward to, and having to choose how to spend my limited energy is mentally and physically exhausting. I equate fatigue with my body failing me, and I hate how I feel when I want to do something but just can’t. I also hate that for me I have to make choices every day about the tasks that I want to complete- do I want to do laundry today or shower? Do I want to spend time with my family today or work? Do I want to cook dinner and save money or do I order out so I can clean my bathroom? Sometimes, my house is a mess, and there is a daunting tower of laundry staring me down, and I don’t want it to be that way, but, I had to make choices to either work, see family, clean the house, do laundry, get groceries, etc. and I just didn’t have anything left over to put into the mess or the laundry. When I cannot do something because my body has decided that it has reached its limit I just want to scream. Especially, when that something I want to do is at 10 am, and I cannot believe that I am already so exhausted.

I highly doubt anyone likes having limitations and I know my general detest for fatigue does not help me cope well with this symptom. I know that my own emotional process with fatigue makes me more likely to be cranky when I have it, and I also know that for me, some days will be easier than others and I must allow myself to throw the fatigue-related hissy fit so that I can then manage it. I am a big believer in stomping my feet and just getting the anger out.

I do not have to like dealing with fatigue, but I also have zero choices in the matter. So, I spread my energy out through the course of the day, take a nap in the afternoon, and consume copious amounts of coffee (I know coffee is bad for IBD and fatigue is bad for paying my bills!). I also manage my fatigue through letting others in my life know when my spoons are running a bit low. Even though I (like most people) do not always like asking for help, I also know that asking for help allows me to live my best life. When I alone do not have to manage it all by myself life becomes better.

Chocolate is Breakfast

“All you need is love. But a little chocolate now and then doesn’t hurt.” -Charles M. Schulz

Mom had a new aide who I happened to call one morning because I needed to let mom know, something. The new aide was wondering about EVERYTHING. Having never been to the house before he had not worked with Mom prior, and at this point, mom was beginning to struggle with communications. The aide was a bit perplexed. He was said, “I offered your mom breakfast, but she didn’t seem to want any, but she ate chocolate.” My reply was, “chocolate is breakfast.” And it was.

Every morning since her diagnosis, Mom has chocolate with her coffee. In recent months, as the swallowing has gotten worse and as her ability to use her body has changed we have to help her more and more but, for years chocolate was breakfast, and I had been fairly certain that Chocolate would be breakfast until she died.

Chocolate for breakfast has also been a guiding post. As Mom has progressed, her morning (and Chocolate routine) have constantly been revised. In the first year of PSP, Mom would sit in the kitchen with her coffee and chocolates. These times I would visit with her, update her about the week and as she progressed from walker to wheelchair and decreased vision and verbal communication I would read her snippets from the mail or news. In the second year of PSP, I would always say to her, “I gotta’ peel your chocolate for you.” So, when she was still at home, in the morning after we came out of the bathroom, I put her coffee in her mug and stirred in the thickener, and then I added the correct amount of cream. During those days, I would bring her coffee and a handful of peeled chocolates to the living room. As she began to work on her coffee, I would peel a handful of Hersey’s kisses and place them on the lid where she could reach them.

In the nursing home, I became obsessed with peeling chocolates for mom. I put five in a small cup and make small “single serve” cups of peeled chocolates. I make her these cups of peeled chocolate whenever my hands need something to do. So, by the time I left for the day I had created a row of soldier cups holding their five peeled kisses waiting for my mom. Then Mom started having aspiration, and it was just not safe for her to eat alone.

So, now, when I am there after lunch, I open her nightstand drawer and locate the Chocolate kisses I know she has there, and I peel a few. Two for mom, one for me. Chocolate is no longer breakfast, but, when I open the drawer and pull out the kisses Mom’s eyebrows raise in her new happy look. I place a tissue on her table, and I place the peeled chocolate on it.

I am not sure what the next chocolate routine will be. I am sure that as it changes, I will look back and miss the old ones (as I always do). But, I also know that as long as she is able to swallow, Mom will always have some form of Chocolate at some point during the day- even if we have to puree it. Chocolate for breakfast (or after lunch) is one small pleasure that Mom gets and it is not one that one of us would ever deny her.

kiss

And They Lived Happily Ever After

“’So what’s the point, then, if we can’t be happy? Why are we doing any of this?’ ‘Oh, there’s definitely happiness,’ Jack said, turning his back on the ocean and looking at her. ‘But it’s just about moments, not ever-afters.” He grinned. “Like when you’re right in the middle of the ocean with your friends, with no one trying to kill you in any kind of horrifying way. You have to appreciate these moments when they happen, ’cause obviously we don’t get many of them.’” -James Riley

I recently had the opportunity to reflect on the idea of “happy ever after” as it applies to my families’ future. At times during this experience, it has been easy to get lost in the hopeless, living one crisis to another. In my reflection on this I wrote, “For months, I had been in a state of survival. Living one crisis to the next and waiting for the damn phone to ring for the next one. From medication reactions to aides getting lost and Mom having to be trapped for hours without any assistance to falls that brought Kate and I to the ER…from suctioning food out of mom’s throat after a really bad choking incident to learning how to humbly with grace help my mom to use the toilet…watching someone die of this horrendously cruel illness has been the single most hardest thing that we have ever done.” In all of this suffering, it can be hard to find time to breath let alone hope or optimism for the future.

Crisis

As I reflected further on the past several years of crisis, I found myself writing, “Every step of this journey, has been one thing after another and those things have been huge, time-consuming, painful, and have resulted in all of us having memories which we would prefer not to. But, in all of this suffering, there is joy. After almost losing Mom last weekend, I saw her on Wednesday and she spoke seven words in a row to me- something I did not think that I would ever hear from her again. That was a good day. This entire process has taught me valuable life lessons- for example, to be there for Mom I have given up a significant portion of my income. I would rather be living paycheck to paycheck and be there for Mom than have all the wealth in the world. But, anyway when that notice came as a family we were trying to figure out how to continue providing care for Mom with my illness getting worse, Dad’s financial situation which we all knew was not good, my brother’s grief related poor choices which were leading him down the wrong life path, plus our usual life stuff- Kate being the mom of a toddler, Emily living in NYC and dealing with guilt of not being closer, etc. That notice changed everything for me- I stopped surviving and starting focusing on other things.” From this low point in the journey, I made a conscious choice to prioritize. I found myself with two mantras which have served me well: 1. Not my monkey and 2. This is a marathon, not a sprint.

Not my Monkey

Managing mom dying has taken considerable resources. We are lucky. There are five of us. For the first year, I wanted to be an active participant with all of it. From applying for benefits to funeral planning every part of it, I wanted to be involved in and helping with. But, we didn’t need five people on all of the tasks. Since my existential crisis and loss of faith, I have separate my monkeys from everyone else’s monkeys. For example, we recently had a situation that needed copious amounts of emails and phone calls. In this situation, there was not much I could offer to it. Rather than calling into conference calls and being an active part, I allowed my sisters to take the lead and had them merely CC me on the emails. In this way, I knew what was going on, but I freed up the time that I would otherwise have had to spend on the phone or participating actively. While they managed that, I spent time with Mom at the nursing home and helped with developing a new plan for eating. In another example, I am the weekday nursing home person. I am available during the week, so I visit on weekdays. On the weekend, I stay home and manage my own life. Sometimes I miss out on seeing extended family or visiting with my brother, but, I am able to have time at home to rest, work, grocery shop, etc. when I otherwise would not.

This is a Marathon Not a Sprint

We have limited time with Mom. In knowing that she is dying, it is tempting to spend every resource and every ounce of energy being with her. But, if I give ALL of my resources right now, I won’t have any for next month or next week. So, I have to prioritize and allow myself the ability to say “no.” Back when Mom was at home, I didn’t have many choices. The times and days I said I would be there she and Dad were counting on me. If I didn’t go then, Dad had to call out of work, or we would have had to deal with the agency and beg them to find someone to step in. Mom’s days were always harder with the agency, and there was enormous pressure to make sure that no matter what I was there. Now, even though Mom has skilled nursing care at the nursing home, I still feel these pressures. When I tell Mom I am going to be there; I show up. No matter what. But, it is on me to manage when I am going to show up and what I tell her. It is also on me to recognize and forgive myself when I can’t. It is a constant readjustment of boundaries, schedules, and knowing that if I have nothing left over, then I am no good to anyone.

Finding Myself

I can’t describe it accurately, but after losing my faith over the summer, I regained it. From that low point, I found a calm core inside of myself which I had thought I had lost- the “everything happens for a reason, and it will all work out” core. I like you try my best to find optimism in these dark places, and I must believe that 1.) everything happens for a reason, and 2.) suffering has meaning (a great life lesson from Viktor Frankl and “Man’s Search for Meaning

I do believe we get a happy ever after- we just have to redefine it. Happy every after in a new chapter without this most recent crisis lingering over our heads. Happy every after to enjoy those seven words in a row. Happy every after to make meaning from all of this. I don’t know yet- my higher power did not consult me and ask me for my permission for any of this, and the universe often provides these lessons in retrospect, so the jury is still out on the exact ending. But, I do think we get a happy ever after just not the one we would choose if we were asked.

For today, Dad can spend time with Mom after work, and they can enjoy each other’s company. For today, I can sit on mom’s bed with her, Red Sox playing in the background, and help her to remove her toenail polish and trim her toenails- lost in the comfort of being with my Mom. Ultimately, all we have is today.

In the words of the Beatles, “and in the end, the love you take is equal to the love you make.” We are blessed, as, despite everything, the one thing I know without a doubt is that love remains.

Research Brief- Stem Cell Therapy for Perianal Fistulas

Fistulas and Crohn’s

Fistulas are sores or ulcers which tunnel through the intestine and into surrounding tissue. For many Crohn’s patient’s fistulas occur around the anus or rectum, but, they can occur throughout the digestive system. In an interview with the Journal of Gastroenterology & Hepatology, Dr. Julian Panes reports that 40% of patients with Crohn’s disease will be affected by fistulas at some point during the course of their disease.

Fistula Symptoms

The symptoms of the fistula depend on its location. In cases of a perianal fistula, swelling and pain are common symptoms. For some patients with a fistula between the bladder and rectum, urinary tract infections can occur. In other cases, waste can leak from the anus or vagina or seep through the abdominal wall.

Traditional Medical Approaches to Treating Fistulas

Unfortunately, fistulas are both painful and difficult to treat. Traditionally, patients with fistulas take antibiotics or immunosuppressants. But, in over 90 percent of patients who are treated with antibiotics, the symptoms recur, and the limited research indicates that immunosuppressants only help 25% of patients. If a patient is not responding to medication, they are referred for a surgical consult. But, surgery can be complicated, and in the case of perianal fistulas, incontinence can be caused due to sphincter muscle involvement.

Stem Cells

Stem cells offer new hope to Crohn’s patients with perianal fistulas. A safer option than surgery, stem cell therapy has been recently approved by the European Commission to treat complex perianal fistulas. For the treatment of fistulas, Alofisel (an allogeneic stem cell therapy) is a huge step forward as it is delivered via injection to the walls of the fistula tract and does not require surgery while at the same time healing the fistula and making remission possible.

Additional Reading