It’s A Two Year Update
It’s been two years since I was diagnosed with Ulcerative Colitis and I thought it time for an update. This is everything that has happened in the last year…
Medication
When I last updated, it was February 2015. I now take a new drug called Humira. I administer this with an EpiPen. Over a couple of weeks I learnt to inject it at home.
I have to inject every two weeks and, to be honest, it’s one of the hardest things. I came off some of my medication, which I was a little apprehensive about. And, I was right to be, I ended up going into a flare and back onto them.
Medication isn’t going to mend it like taking antibiotics would for a chest infection. It is hard to have a chronic illness. The side effects of some of these meds are physically, emotionally and mentally exhausting. They include joint pain, headaches, fatigue, itching, sore throat, fever, chills and dizziness.
Over Christmas, I was on my feet for long periods and working in an environment where I had to move a lot. Picking up items, bending to reach lower shelves, I felt those side effects a lot worse than before. Because of the medication. I remember coming home most nights and collapsing on the sofa or on my bed. I didn’t have the energy to eat or even get changed. Just wanting to sleep.
When I got up in the morning, I did it all again. I was determined not to let it get me. But, I ended up breaking because I didn’t take care of myself. Towards the end of 2015, I learnt to say no and realise my health comes first.
Depressive State / Anxiety
When I started to flare again I became housebound. That was for around 10+ weeks. It was very, very hard. I was referred by my GP to have Cognitive Behavioral Therapy, which was a godsend.
I learnt to be calmer and not panic as much when my Ulcerative Colitis played up. Although it didn’t “fix” me, I learnt to be the one in control mentally. I was able to leave my house, start working again and I’m getting back on my feet.
I still have problems driving the car and I do rely on my parents. So, I still have that to tackle, but I’m not pushing myself too much. I learnt to say no through CBT and it was my therapist who showed me what I was doing to myself. How much I was taking on and how that affected my anxiety. I am forever thankful to her.
Dietitian And Weight Gain
I haven’t discussed this in a lot of detail before, but with all of the medication, I have put on weight. Then I lost it. Then I put on even more. It’s upsetting. I hated all the yo-yoing. I started at the gym but when I became housebound, and I was to and from appointments, I stopped going. I’ve started to go again, but recently had to take a little break.
I was referred to see a dietitian as I find it hard to stomach certain foods. It’s almost as if the colitis says “You can eat apples, but only this week. Next week I’ll make sure it’s a trigger food”. It is bizarre.
I was put on the low FODMAP diet. If you’ve never heard of it before, then give it a quick google. There were a lot of foods I had to eliminate and I found it difficult to have a meal. I only lasted two weeks and in that time I ate rice krispies, chicken, potatoes, broccoli, pawn crackers, ready salted crisps and, free from foods. As well as drinking a whole load of fizzy drinks.
Everything I ate and drank was high in fat, salt and sugar. All I was trying to do was satisfy my hunger without breaking the diet. The most frustrating thing? I ended up off work for a week. It played up my ulcerative colitis and I spent the majority of the time running to the bathroom.
The dietician then suggested I drink fortijuice. It has a lot of vitamins and minerals. I’ve only recently started this and spent the past two days throwing up and in the bathroom. For me it is frustrating as I’m trying to get answers. Be able to eat a meal without running to the bathroom half way through it.
Well, here’s another email to the dietitian and probably another route to try. I’ll keep you updated on that.
Age
This is going to be another “heart on the sleeve” moment.
I turn 24 this year and I never imagined being at the point I am at in life. I wanted to live away from home, maybe with a partner and in a full-time career. Ironically, I always said I’d like to be married by 25 (can manage that in a year, right?) and be in my own home.
Realistically, I don’t see that happening in the near future. I am applying for full-time jobs and trying to find a position. It’s hard when daily travel is always an unknown factor. Each day I don’t know how my colitis will act, another reason I’m making diet changes and trying so hard with the medications.
I want it to be stable,so I’m not a constant let down. I don’t feel like an adult. Like most people, I have those little fears and apprehensions of doing certain things on my own. With Ulcerative Colitis, I’m now petrified. I don’t want to be stuck. I watch friends go on holiday and be spontaneous on nights out. Everything I do has to be thought through and planned. Even then, I can wake up one morning and find I’m unable to do anything. It’s like that for the time being and I sometimes feel as if my life isn’t moving and as each birthday comes it does get worse. So fingers crossed.
I really can’t believe it’s been two years. Hopefully, this will be the year I get on track with it. As I mentioned, I only update now and then but there are bloggers who post more often and I wanted to share Daisy’s Blog, http://www.xoxocrohniegirl.com/ as it has helped me a lot. If your going through it too or something similar, it may help 🙂
As always, thanks for reading…