Series | How my Ulcerative Colitis impacted my physical activity
This is part of a series about how my ulcerative colitis impacted different parts of my life. This is not my usual type of post. There are no tips, learnings, or useful bits of IBD information.
These are simply the raw and honest thoughts that I have when I’m feeling a bit annoyed with my life. Times when the fatigue gets too much, I’m stuck indoors, or I’m laid awake at night. I’m sharing this with you simply because I want you to know that you are not alone.
What would my life be like without UC?
I can’t help but wonder what my life might have been like if I didn’t have ulcerative colitis. I think about all of the things that would have been different, and then I wonder how much different, or better my life would be now.
I always took my health for granted, as I guess most people do. That is until it’s suddenly not reliable anymore! I’d never had more than a cold before UC turned up. Suddenly, I was unable to leave the house because of the constant, urgent need to use the toilet. A few days later and I was completely bed-bound.
All I was doing was sleeping, waking in pain to go to the bathroom, passing blood and mucous, and then going back to bed to lay in front of the fan because the episode made me feel feverish and faint. I was so weak, that when a doctor came out to see me, I really struggled to even get down the stairs to open the door.
Most know by now that this was promptly followed by a trip to the emergency department, a diagnosis of UC, and surgery to remove my colon and to give me an ileostomy a few days later. Post-op complications made that hospital stay a long one. I had sepsis, another surgery, post-op-ileus, and C-diff. I was just in and out of sleep the majority of the time.
Needing significant help after surgery
I will always remember two physiotherapists arriving at my bedside, and telling me that they’d come to help me get up and about again. I honestly thought that they had come to the wrong bed, but, they’d said my name? I was confused. Why would I need help? I was 19 years old; fit and healthy! I figured I would just show them!
They helped me to the edge of the bed because my abdomen was still very sore. They each took one of my arms, and I stood. Only I didn’t. I couldn’t. My legs would not support me. There was no muscle left in them! This realization mortified me!
Feeling weak throughout a slow recovery
It hadn’t occurred to me that I’d not actually got out of bed for the last few weeks. I had a catheter in, the nurses had emptied my bag (when my stoma finally started working) during ward rounds, and I’d had been given a bowl to wash in every morning... I felt embarrassed by my weakness, which made me more determined to fix it.
A few weeks later, when I finally left the hospital, I was still very weak. I could barely do the stairs at home, and I couldn’t even open doors by myself. That recovery was so slow, but it made me grateful for every tiny achievement.
I’d always expected to go back to normal after the surgery, so I soon forgot about being grateful for the little things. I returned to work, walking there and back, and apart from the fatigue, I did feel pretty normal health-wise.
Then, I began getting flares of UC in my rectum before I had my j-pouch created, and flares of pouchitis following it. When I was flaring, I was often beaten into submission. I would need a lot more rest, and I would get out of breath quickly.
Trying to live a normal life after surgery
But, when I was well again, I immediately went back to living life as normally as I could. I went to festivals and on nights out; I’d dance for hours on end and only ever have sore feet to deal with after.
I had a couple more surgeries after my j-pouch had been connected due to a twisted intestine and an abscess, which led to needing a temporary ileostomy again for a while. After it was reconnected, I only had a brief period of feeling well.
Then came my longest flare to date. Because I’d had my pouch revised when it was disconnected, my team wanted me to re-try the treatments that had previously not helped. Cue a very lengthy period of waiting for remission. That flare had knocked me on my arse, and I was finding it impossible to pick myself back up.
Dealing with overwhelming fatigue
The fatigue was worse than any fatigue I’d experienced before. I had started getting lifts to work because I didn’t have the energy to walk. I barely managed to cook for myself anymore, and having a bath or shower was the most exhausting thing that I actually managed to force myself to do.
I finally had surgery and began feeling better in myself. Recovery involved a lot of lying down. I’d had my rectum removed, and I couldn’t sit on my bum. I made sure I got up every day and started increasing my walking distance around where I live. I thought that was enough. In the past, I’d just gradually got back to my normal life...
Daily tasks were painful
I didn’t go back to the same job. I got a shiny new one, which let me work from home 2 days a week. That simple factor of less walking had an impact on my physical recovery. Avoiding using my abdominal muscles because of pain near my belly button also impacted my recovery. I assume that my 18 months of forced rest due to being so unwell prior to surgery also took its toll!
12 months after surgery I had to see a Physiotherapist. He couldn’t believe how weak I was, and to be honest, neither could I. I’d expected to bounce back, just like I had after the previous surgeries and periods of flare, but I hadn’t. I was finding normal, daily tasks exhausting and painful.
Still working on my strength and stamina after surgery
You don’t realize how physically active you are on a daily basis, just going about your life until you can’t do it. I’ve never been into exercise. It was never something I consciously did, but my life kept me active enough. Now, I have to make time every day to do exercise. The struggle is real, but I am keeping at it!
I freelance from home now, so I plan my exercise every day. I’m 26 months post-surgery and still having to work on my strength and stamina. I have also been diagnosed with Fibromyalgia, thought to have been triggered by the latest surgery, so I guess that explains a lot. I am nowhere near what my normal used to be, and it often feels like I will never get there.
So, at the moment, I am trying to practice being grateful for what I have, and what I can do. But, I am still annoyed that my life has been so heavily impacted by UC and the surgeries.
Does exercising regularly help in the management of your symptoms?