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

An Introduction to Anticipatory Grief

“He’d lived long enough to know that everyone handled grief in different ways, and little by little, they all seemed to accept their new lives.” -Nicholas Sparks

After Mom was officially diagnosed with PSP, I set about doing what I do- reading and learning everything I could about the topic. While this method works for me, I do not recommend this path to all loved ones who are in the PSP journey. Watching videos of people with late-stage PSP was incredibly hard, I curled up in a ball in my comfy chair, a box of tissues beside me, computer on my lap and tried to wrap my head around what was coming- and it seemed almost impossible. But, those videos haunted me and began to prepare me for the future. They also triggered my anticipatory grief.

What is anticipatory grief?

Anticipatory grief is grieving that begins before someone dies. In my case, the grieving began with the label of PSP and understanding that it is terminal, progressive, and non-curable. The symptoms of anticipatory grief vary from person to person, but, these symptoms are generally the same as those experienced after death. In my case, the feelings of anticipatory grief are complex and interwoven into the grief I feel watching my mom lose various abilities.

What do I need to know about coping with anticipatory grief?

  1. No two people will have the same experiences!  While I have experienced profound anticipatory grief, Medicine Net  points out that not all people have symptoms of anticipatory grief. In other cases, anticipatory grief might have the same symptoms of depression whereas for others the senses of loss might manifest as anger.
  2. Use your support system! I have a diverse and expansive support network of people which have helped me to process Mom’s death. In addition to my friends and family, I found a PSP support group online which has been critical to helping me to both process and learn about PSP. The Cure PSP organization has on online find support tool and Grief.com offers a searchable list of support groups throughout the United States. Finding support can be critical to processing and coping with anticipatory grief.
  3. Be gentle with yourself! When caring for someone with a terminal illness there can be days when it simply does not feel like enough. Between normal life responsibilities, care taking, and grieving it can be easy to slip into destructive behaviors or harmful patterns of negative self-talk. In these moments, learning to recognize the behavior and reminding yourself to stop and breath is critical.
  4. Give yourself the time! It is okay to feel exactly how you are feeling. Take a minute (or longer) and allow yourself to feel. Instead of choking back the tears give yourself the gift of allowing them. If you are feeling angry allow yourself to be angry. Stomp your feet, yell, tell God to “fuck off” if you have to. Then after feeding the feeling for a brief time, get up and get moving! Do something, anything!
  5. Seek professional help if you need to! Anticipatory grief can be overwhelming and can become increasingly complex. Some people find that a professional can best assist them through this time. If you find your grief becoming overwhelming or impairing your ability to function, then it might be helpful for you to see a therapist or join a professional support group.

 

Balance, what Balance?

“No matter how bad your heart is broken, the world doesn’t stop for your grief.” -Faraaz Kazi

On Weds., I went to go see Mom…my usual drive an hour one way and spend time with her…I have been driving an hour or so one way at least once a week for years now since this fall it has been more like 2 or 3 times a week. I get a coffee, find something good on the radio, hit 91 North and depending on the week, the month, or the day I drive and I cry, or I drive and I think, or I drive and try to tune it all out with NPR. Sometimes, my partner drives with me, and we talk, and I am transported back in time…back to before PSP. Sometimes, I am stressed and upset and angry and have zero patience with others on the road. Sometimes, I am in a good mood and can appreciate the beauty of Vermont. Other days, like last Wednesday I was a bit scattered, and before I left, I spent a solid fifteen minutes talking with my partner about balance.

In addition to mom, I have to manage the Crohn’s disease. Over the past two years, I have gotten progressively sicker and yesterday began a fairly intense new medication and more than likely I will have surgery this summer.I also work for myself from the comfort of home- this most days is a blessing. There is no way I would be able to be there for Mom or manage my own health without this freedom. It also means that on a fairly regular basis my phone is pinging away with work and I just want to throw it out a window and tell everyone to F-off cause don’t they get it? My Mom has PSP, and I want my life to stop for a while so I can spend as much time as possible with her. But, life does not stop just because we are going through this. My landlord still wants rent on the 1st of every month (although I will say he has been amazing at letting us pay late here or there when we have had to), my internet bill still needs to be paid, I still need to get to the grocery store, do laundry, attend to my partner (who is often neglected in this insanity that we find ourselves in), and be a participating and functioning member of society.

The question I posed to Ryan (the aforementioned partner) is how? How do I keep doing this? How do I find balance in the insane? How do I continue to maintain this when it is all-consuming? How do I get the time to weave, to knit, to sew, to take a walk, to do anything but work, care for mom, care for my health, etc. He replied to me and said, “you have been doing it for years, and you DO have a balance just right now it has been a little more intense.” I asked him, “do I go less often right now?” He said, “you do what you can live with.”

Wow, what a powerful statement- “You do what you can live with!”

The theme for the past two years has been- “no regrets.” I would rather be broke and have the wolves at the door, but, be present for Mom. I would rather go be with Mom then come home and work until midnight if need me. Then there are the days I just can’t. I just can’t do it, and then the feeling of regret, guilt, and conflict settle in my stomach. She never has ever said “no” to me.

One of my last memories of my mom before the PSP really took hold comes from July of 2015. I was in the hospital- GI obstruction, and I was not very okay. I was laying in bed watching television in my hospital bed with Ryan when my Mom walked into my room. I had not told her my room number or where I was in the hospital- but being my Mom, she figured it out. I was really out of it and ended up falling asleep right after she got there. It was the first real sleep I had. Knowing my mom was sitting next to my bed, standing guard over the scary shit gave me the freedom to sleep. I wish I had been more with it; I wish I could have gathered my energy and told her right then that even at 32 I had really needed my Mommy and I was so happy to see her. I felt bad because she drove all the way down to see me and the entire time I was there I slept. But, she knew that was exactly what I needed.

My mom needs us now in the same way. She needs us to be her voice when she doesn’t have the ability to talk. My mom needs our presence to give her peace and comfort. My mom needs us to be there and be present and just show up. But, I also need to make sure I have clean clothes, that the rent is paid, and that I eat more than a pop tart and coffee (at least sometimes). I also need time away from the pain and suffering. I need to do the things that fill my soul up and give meaning to life. I need balance in an unbalanced situation. So for today, today I will do my best to manage the medication side effects, work, life, and sometime in this day I will finish wrapping my loom and start a new project. I guess Ryan was right- I do have a balance even on the days it feels all consuming.

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