Stopping Steroids: Drugs and Drama

I’ve been on a low dose of steroids for many months now. It’s a special one for Crohn’s called Budesonide aka Entrocort that’s supposed to work directly on the terminal ileum where my Crohn’s is, and so it’s much better than taking stronger steroids, like Prednisolone, which have worse side effects. The funny thing is, I seem to have all the usual bad side effects of steroids while I am on the lowest possible dose of Budesonide ie 3mgs. I have a hypersensitivity to many medications, in fact, except maybe anaesthesia… my dental work requires maximum jabs as does my colonoscopy sedation… I have woken up before and asked weird questions in the middle of procedures…. But I digress…

The side effects of Budesonide, as experienced by me, include bloatedness, weight gain (the kind that makes you look like you have a beer belly or are constantly 7 months pregnant!) mood swings, headaches, and nausea. I have never liked being on steroids of any kind, but sometimes I have had no choice. It’s very frustrating not to have a choice, but life is full of choice-less moments when one has to just do the necessary or needful.

The tricky thing about steroids of any kind is weaning off them. You cannot stop taking them suddenly because the body will go into adrenal insufficiency. Basically, the steroids have been providing the body with cortisols that the adrenal glands usually provide, and since the body is receiving them from another external source the glands stop producing the cortisol altogether. Stopping steroids then places the body in the dangerous position of not manufacturing cortisol, and not receiving any either, and this leads to adrenal insufficiency which can be fatal.

I once tried going off Budesonide cold turkey. I was going to Bali for a wedding, and I felt so bloated, and fat and I just wanted to get off the steroids and feel and look better (yes, I was being mega vain!) so I stopped taking it, just like that. I felt great the first 2-3 days, and my tummy went down. Then I began to feel joint and bone pain and muscle aches and my lower back hurt so badly it was an agony to move. I felt feverish and had chills at night. I lost all apetite and was even throwing up. I couldn’t get out of bed to go see my doctor even but after 2 days of feeling like this I dragged myself off for blood tests and to see him. We finally pinned all the symptoms down to my stopping steroids suddenly. If I had been on high doses and had stopped like that I could have put myself in severe danger of falling into a coma, and eventual death, especially if anything stressful were to happen to my body, like surgery or an accident. Cortisols help us react and cope with stressful events and without them we simply cannot function.

I went back on the Budesonide with the agreement that I would wean off it properly rather than stop cold turkey. Weaning off slowly allows the adrenal glands time to kick back in and produce cortisol again. It has resulted in some measure of side effects but not as severe as when stopping completely. I look forward to being off it altogether, but I do hope the Crohn’s can stay under control without it. If it does flare up badly then I may have to go back on Budesonide and live with my strange body shape for a lot longer. Boo! :(

I would like to lose that swollen belly, I would like to have fewer headaches and less photo-sensitivity, and I would like to be on as few drugs as possible. This is the dance I do with my doctor all the time. I try to get away with as few medications as possible and he worries that I may flare up. We go back and forth trying to find the right balance for that moment in time and hoping it will keep me well for the longest possible time.

I am grateful for my doctor who is a good friend and a genuinely caring person. I just hope he can put up and keep up with my dramas… he says it keeps him on his toes, I say somebody has to be drama queen, and so we get along. :)

Thanks for reading,

Pav

Countless Weddings and Several Funerals

Somehow as one grows older one seems to have so many more weddings to attend and almost as many funerals to go to as well. While one is a happy occasion the other is an overwhelmingly sad one. Occasionally in between these life events would be the most joyous time of all… the birth of a baby into the family or to a friend. Almost as if God gives, God takes away, but then He gives some more… and the cycle of life continues.

In my younger days I found it easier to attend every wedding I was invited to, be at every funeral I was connected with, visit with every new parent that I knew in my life. I loved the feeling of being a part of something larger than myself. I loved that my kids knew that there were these major events that sometimes involved their attendance, but many times did not, yet they knew the importance of them. Sometimes I reveled in helping out a friend in need. I would cook and deliver a meal, or visit an ill friend in hospital, or sit with someone in mourning… I gave more freely of myself, my time, and my energy… and I enjoyed it all from the depth of my heart.

As I have aged, and continued living with Crohn’s Disease I have found that my energy levels are lower, and I seem to have so much on my plate with 4 kids, my part time work and studies and just managing a household that I no longer enjoy weddings, no longer am able to emotionally manage attending a funeral, no longer reach out to those in need… not entirely because I do not want to, but because I struggle with pain on a daily basis and it makes it very hard for me to do those things. Sometimes I have resorted to selecting the events I will and can attend, and simply declining to attend others, partly to preserve my energy, partly to preserve my sanity.

I am sure I have offended people in the process. People who wanted my company or my presence, hopefully because they really wanted me, and not seat fillers J. People whom I knew but hardly met with in the course of the year would be upset by my lack of attendance at their important life events. I think these people do not know that living with chronic illness drains the very life out of a person every single day… and by nightfall I am a limp rag. I have dragged myself to events… only to find myself suffering from a migraine, or having to be on my best behavior when all I want to do is slump in a chair and sleep… how not to offend people and still be true to yourself and your needs? It’s a very tall order indeed.

I often surround myself with people who understand my needs because I find it less stressful. I find it so good to be on my own when I am in pain or have had a bad night’s sleep that these days I have become quite home bound, entirely by choice. Is this a passing stage in my life? Will I break out of this and rediscover my old self – the one who kept in touch with people and knew their needs, and actually went out of her way to help others?

Part of the problem also lies in dealing with the feeling that haunts me sometimes… the feeling that I reach out to many, but very few seem to reach out in return to me, and sometimes I wonder if this is because I am too naïve, too giving and too easily hurt and not managing my own expectations. The challenge is to keep giving and not expecting anything in return… but it has become harder for me as I have aged. Perhaps it is because I have endured considerable hurt this past year especially with my father’s passing, that I find I do not want to go out on a limb as I once did, but prefer to curl up in a corner with a book, or a movie, or my computer, and often all 3... and let the world go by.

I enjoy snuggling with my younger kids, and making small inroads into the world of teenagers and preteens… and this alone takes up a lot of my time… unbelievable but true! I enjoy quiet moments with my dear husband after a busy day and all the kids are in bed and we watch tv together or talk about our house project, or work, or some issue with the kids. I enjoy watching old classic movies on tv when the kids are at school, with a cup of tea and a slice of something to tide me through the crazy hours when they are all home until they go to bed…

More insular, more introspective, more alone, more with the ones I love the most, and who love me in return… this is what makes me happy, this is what I choose.

Thanks for reading!

Pav