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

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