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 five 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.

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