Hiii guys!
So a lot of that follow me on Instagram may be aware of my chronic illness of Ulcerative Colitis. This is a lifelong bowel disease of which there is unfortantely no cure so it’s managed my varies of treatment such as medication, infusions and surgery.
I’ve suffered for a long time with my bowel and it was always passed off as ibs. When the symptoms became unbearable it took 2 years to get the doctors to take me seriously and finally get a diagnosis. I’ve been diagnosed now for 4 and a half years. 3 years ago I took a bad turn and ended up in hospital almost having to have my colon removed and a stoma bag fitted. At the time the pain was SO bad I didn’t care about having a bag I just wanted the pain gone, but it was also extremely scary. Luckily they found another option and decided to try my on inflixamab infusions. These I have had done every 6 weeks for 3-4 hours over the last 3 years.
Usually the treatment makes me feel very weak and drained for a few days afterwards, then a lot of my symptom subside and I feel almost normal for a few weeks till a week before the next ones due. However after my last couple of treatments I’ve been feeling faint for a few days afterwards. I had an infusion 2 weeks ago on Monday 11th, this time I was in agony with my stomach in the evening. The next morning I was sick, collapsed at the top of the stairs and was bed bound for the rest of the day with uncontrollable shaking and agonising stomach pain. I’ve not had pain this bad since before my treatment and it’s rather scary. I was told when I was put on this form of treatment that it was my last option before surgery.
Bad news is, my consultant where I live has taken early retirement, the IBD nurse specialists have both left and all doctors I’ve come across has NO clue on how to deal with colitis so just put me on steroid tablets of which I REALLY don’t want to have to go back on after being on them previously for 5 years. So for the last 2 weeks I’ve been in AGONY, with horrendous stomach swelling to the point I wanted to cry every time I had to move and it hurt so much. I’ve had to take a few days off work, which being a self employed hairdresser hasn’t been good for me finacially which is slightly stressful but where my illness is stress related I’ve been trying my upmost hardest to remain calm.
Fingers crossed I can FINALLY see a doctor within the next few days (it’s literally impossible to get an appointment where I live) and they can refer me to a new consultant who will hopefully give me another option before having to have surgery 🤞🏼
These last couple of weeks have been not on physically draining but massively mentally draining too. This condition affects my mental health so much. It’s so hard to express how much pain you’re in when you physically look ok from the outside. It’s very lonely, depressing and it knocks my condince insane amounts, especially when I’m swollen.
Since opening up more about it on my Instagram I’ve become aware a lot of people don’t know much about IBD so I just wanted to raise a little awareness and keep you all updated on me I guess!
I’m trying my absolute best to stay relaxed, positive and to keep smiling despite the pain I’m in 🙌🏼✌🏼
Do any of you suffer with chronic illnesses or have crohns or colitis? I think it’s good to raise awareness and talk about these issues more so people suffering feel less alone 💜
Much love!
Sammiii
Xo
