I tried to use a plaster to hold the edges down but it didn’t really work too well; it stuck to the bag fine but didn’t stay stuck to my skin for long due to it’s placement (partly over my naval) as well as the heat. I just changed the bag the next day and the new one seems to be staying put. I hoping it was just a one-off.

Hospital-selfie because I’m trying to stay positive and because I can.

Thank you to @natsufatsu, @thatchronicfeeling, and @sillyriceball for all your kind words and helpful advise. I will be talking to my doctor again tomorrow about starting trials for vedolizumab but I may still request to speak to the surgical team just so I have a better understanding of what they can do and what the risks are. That way, I’ll have all the information and I think I’ll start to feel a lot better about my current health situation.

Thank you @natsufatsu. It is a difficult decision to make and it’s good to hear from you and get others opinions on these things. For now, I have decided I’m going to opt for trialling at least the vedolizumab before making any more permanent decisions. I spoke to my sister, @sillyriceball, about it as well and she has been very helpful for bouncing ideas off of too. She agrees I should try at least this one last drug. I don’t want to skip it in case it does work, and even if it only gives me a few months relief, I think it’s worth it. I’ve been a bit depressed about being in hospital again and just want things to go back to some level of normal.

I think I’m going to book some time off work towards the end of this month. I’ve got a busy couple of weeks coming up so I think my body will appreciate the rest. I’m finding I’m having to reteach myself the meaning of self-care and that time spent recovering is not time wasted. Thanks @natsufatsu for the suggestion; it’s not easy for me to get time off but I’m sure my work will understand.

Wellness Survey for Chronic Illness

Here’s a survey by Terry Wahls, M.D. (I was tagged by @natsufatsu) Thought I’d
tag some of the lovely people I follow. Feel free to share but don’t feel
obligated. @thatchronicfeeling @ibsprince @autistic-edser @spooniestrong

1. How do you feel today? Be specific.

Tired. Worn out,
even though I think I slept better last night. My body is aching, mainly my
legs. I want to do things but I get tired too quickly at the moment.

2. What did you do just for
yourself today?

I’m going to
make banana pancakes just for me. Doesn’t sound like much but I enjoy cooking
and it’s an easy recipe (eggs, mashed banana)

3. What did you eat today? How did it make you feel?

I’ve had a fortisip
so far. I’m really looking forward to the banana pancakes because I’ve never
had much success with pancakes even though I could eat them every day if my gut
allowed it.

4. Did you exercise today? What did you do? How did it feel?

The only exercise I’ve
managed today is taking the bins out. I live in a 1st floor flat,
only accessible by a metal set of stairs, and the bins are located at the other
end of my building. It’s not really that far but given how my legs are at the
moment, I think I’ve done well. I’m planning on going for short walks later
this week to build up my strength in time to return to work.

5. For whom or what are you grateful? What matters most in your
life?

I am eternally
grateful for my fiancé. We’ve been together for almost seven years (engaged for
three), and despite a lot of my own personal issue with intimacy to begin with,
he’s stuck with me and never complained. This last year has proven how amazing
he is; he’s been my rock throughout all my medical emergencies, procedures and
flares from when the symptoms first appeared several years ago, through
diagnosis and beyond. He’s been there for all of my bad days and help me make
the most of all my good days. He’s suffered alongside me through three hospital
stays, having to see me on oxygen more than once, and the endless number of
needles and cannulas I’ve had stuck in me. I’m so grateful he exists and is
still by my side. I have no idea what I’d do if he was no long a part of my
life.

6. Do you have a higher purpose or driving force in your life?
This will change, but think about what it is today. 

What’s driving me
today is the need to get back on my feet. I want to get better, and stay
better, for as long as I can so I can enjoy my life and, hopefully, start a
family of my own one day.

7. How long have you been treated with conventional medicine? How
is it working for your condition?

I first started
on anti-inflammatory prescription medication (mesalazine) in April 2016. This
was just before my official diagnosis but after my first colonoscopy. I have
remained on this specific medication since. They have since added
immunosuppressant drugs (one of which (azathioprine) made me sick after a while
so they changed the type (mercaptopurine)). They tried infusion drugs (infliximab)
but when I proved unresponsive to that, they changed that to humira injection.
I have been on several prednisolone courses which have proven successful (although
the current one is a little slow working), as well as taking a lot of supplements
for calcium and vitamin D.

8. Do you remember the first time you ever had a symptom of your condition?
Tell the story.

It has been
several years since my symptoms first started but I thought nothing of it. I
remember pizza being a trigger so I tried to cut down on that, but I don’t
really remember the first instance. I remember the first time there was blood
though; that terrified me. I was feeling really lousy anyway, going to the
bathroom all day. We had just ordered a take away for dinner and I had gone to
the toilet and discovered blood. I came out and (stupidly) googled it. My fiancé
saw the results and told me to stop reading because at the bottom of the list
of potential reasons was Cancer. I was knelt on the floor crying for about five
minutes asking what was wrong with me. The next day, I got an emergency
appointment with my doctor who immediately asked for bloods to be done as well
as a stool sample from me. From that it was clear it wasn’t an infection so she
referred me to have a colonoscopy because she suspected it was either Crohn’s
or Colitis. The doctor who performed the scope said he suspected UC over CD so
I was referred again to a specialist who assessed me and determined it was UC.

9. What symptoms are most troublesome to you today?

The cramps have
been pretty bad today but nowhere near as bad as last week.

10. Do you blame yourself for things? Like what?

Yes. Even though I’m
trying to eat safe foods, I sometimes slip up and have something I’m not meant
to and that causes me pain, so I blame myself for my symptoms sometimes. I also
blame myself for any illness/stress in my families lives because I know my
parents worry about me a lot. My sister, who lives a long way away, worries too
and I hate that because she’s got enough going on in her life without having to
worry about me. And then there’s my fiancé who struggles to sleep most nights
and I don’t help by having to rush to the bathroom at all hours.

11. How would you describe your stress level today?

My stress is fairly
low today because I know I have time to do the important things (like book
appointments, collect medication from the pharmacy) later.

12. What could you do tomorrow to make it a better day than today?

I think tomorrow
would be better than today if I ate the right stuff, went for a walk, and
actually allowed myself to rest and do nothing for more than a few minutes.