The Devil’s Medication- Prednisone and IBD

“Sometimes I say the medication is even tougher than the illness” -Sanya Richards-Ross

I wrote a text to my sister this morning, “while I was showering I determined Crohn’s has turned me into a tired rage-filled hormonal chipmunk with acne.” For us IBD patients, this sentence is all too familiar. One of the more effective medications for IBD, just happens to be Prednisone. Prednisone, the stuff nightmares are made of. When Prednisone is combined with other medications and treatment it can sometimes make us feel like the disease itself is better than the treatment for it.

Throughout the decades I have had Crohn’s, I have been on many expensive “miracle” medications which have all promised to relieve the suffering that I experience. Sadly, for me, the majority of these have failed me. The fact that, for me, these medications have not worked has threatened my in general low-key and often accepting personality. For example, whenever I see an Entyvio commercial I find myself arguing with the tv. “Junk!” I proclaim, all Entyvio did for me is allow fistulas and abscess to form. Of course, my general anger at the TV, is probably due in part to the copious amounts of Prednisone I am currently taking while I, “wait and see” if Stelera (the newest, latest, and greatest “miracle” medication) works. This is not to say that biologics are all bad. In fact, I am so grateful for TNF inhibitors. I often wonder if these had been available to me when I first experienced Crohn’s symptoms, if I would have ever had to have my large intestine removed in the first place. But, like other contemplative processes, the “what ifs” can drive one crazy and in general I am grateful for and have never regretted having a proctocolectomy.

Prednisone

I both love and hate prednisone. In the middle of a flare, under-weight, in pain, and unable to function in daily life, I am always so grateful for the relief that Prednisone provides. In fact, of all of the miracle medications, I have ever been on the only one which has consistently given me relief has been Prednisone. But, with this relief comes a sacrifice and toll on both my body and mind. As I said to my sister, on Prednisone, I become a rage-filled hormonal chipmunk with little sleep, mood swings, and the development of other medical problems which come with their own treatments. For example, at seventeen I was diagnosed with Osteopenia which is a precursor to Osteoporosis.

Dealing with Prednisone Side-Effects

I am the first to admit that I am not always the most graceful at managing the side-effects which come with Prednisone. Recently, I was angry with my partner for an inordinate amount of time for no other reason than I was just angry and he happens to live with me. But, I do the absolute best I can, to not let Prednisone rule my life.

Support

While support alone will not take away the horribleness that can be Prednisone, it can make it easier. Helping my partner to understand how it feels to be on Prednisone and the associated rage/mood swings allow him to be more empathetic as opposed to angry that I am being such a, well for lack of better word, bitch. In addition to my partner, I use my girlfriends and family for comic relief and to check my rationality. It helps immensely that my best friend has also experienced the joys of Prednisone and she helps me to laugh about it often.

Food

One of the more infuriating Prednisone side-effects is a feeling of constant hunger. For those of us who have IBD, food is the enemy and being constantly hungry is not necessarily helpful. Furthermore, the weight gain associated with Prednisone hits hard and fast which can be not so beneficial for those of us who struggle with self-esteem as it is. To combat the constant hungry, I tend to keep foods I know are “safe” but also relatively healthy on hand. Yogurt, crackers, and smoothies become God sends for me. An added benefit of yogurt or other dairy products is the calcium which can help to mitigate the bone density issues related to Prednisone use. In addition to increasing calcium, some experts recommend the limiting of salt as water retention is one of Prednisone’s side-effects.

Self-Talk and Positive Thinking

Ideally, one can develop a way of talking back to the mood swings and other side-effects. When I find myself laying in bed crying because all I want is a turkey sandwich with both lettuce and pickles and know that eating it would cause a bowel obstruction it helps to tell myself that a.) this won’t be forever, b.) I can still have a turkey sandwich just no lettuce and no pickles, but, I can have bacon!, c.) I’m crying because I am on the devil’s medication not because I have real genuine feelings about the sandwich. (Although, I do have real feelings about the turkey sandwich just not ones that would typically result in sobbing, but that is a post for another day…). Reminding myself that this too shall pass and that someday I will taper off this medication and be back to my regular self-does help me to keep it all in perspective.

In the midst of joint pain, or weight gain, or rage it can be so difficult to remain stable and focused. But, for me, those side-effects, in general, outweigh the alternatives and I know that Prednisone is just a temporary situation to hold me over until the some-day that I will be able to taper. With that being said, I feel as if it would be irresponsible of me to release this into the universe without saying this: follow the directions of your doctors. No matter how bad the side-effects are, going off of Prednisone without a taper (especially if you like me have been on it for months or years) can have serious consequences. For more information about the importance of using a taper read “Prednisone Withdrawal: Why Taper Down Slowly” from the Mayo Clinic.

Additional Reading

  1. Prednisone Frequently Asked Questions
  2. IBD Medication Guide- Corticosteroids 
  3. Fact Sheet- Corticosteroids 
  4. Crohn’s and Colitis Foundation- Corticosteroids 

If you have any great tips for managing Prednisone side-effects I would love to hear from you in the comments!

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

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

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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