Author Archives: Belinda

My first race

I was able to enter & complete my first race.

Did the 5km Big Walk in the streets of Cape Town, South Africa in an hour.

I wasn’t sure if I’ll be able to finish or whether it would take me hours, since I haven’t really been able to get fit since my flare landed me in hospital in May.  The Humira treatment I’m on seems to be working since I can’t recall when last I actually felt like I could walk for a bit, nevermind 5km!


 

 

 

 

 

 

 

 

 

Relief & joy for finishing the 5km walk! Thank you to my boyfriend who walked with me (even though he is much fitter and would probably have enjoyed a longer distance).

Hope there will be many more races to help me live a healthier lifestyle.

Bone marrow could help with treating Crohn’s disease

Could it be that Bone marrow holds the secret for treating Crohn’s disease? Research was done which showed that inflammation that wreaks havoc in digestive tract is often mirrored in bone marrow.

Could this mean there is another avenue to treat Crohn’s disease? Perhaps with less complications or side effects?

Michigan State University | News

Humira injections

Humira as treatment for Crohn's

 

 

I injected my first dose of Humira seven weeks ago and am due for another dose today.  Have been doing the minimum activity-wise, as I’m still in survival mode. It takes quite a bit of energy and perseverance to go to work, eat well, don’t stress and get enough rest when you’re not feeling great.  So the end result is that I’ve been scaling back quite a few things in my life that isn’t very crucial at the moment.  I hope the Humira will kick in soon so that I don’t have that flare feeling anymore.

I opted to use the pen to inject instead of the typical needle as I want to think about it as little as possible.  The idea of injecting myself kind of freaks me out a bit if I’m honest.
Humira Injection pen

New Crohn’s treatment for me

I’m starting new treatment this week for my Crohn’s disease called Humira. Hopefully it will put my inflammation flares into remission so that I can stay off cortisone for longer than a few months! Busy looking at all the information about it and getting answers to all my questions from the nurse that assists with the injections.

Biologics like Humira is usually in injection form so I’ll have to inject myself every two weeks. Luckily it is in a pen type contraption which means i need to point, keep still and click a button to inject.  Hopefully it doesn’t burn too much and that I don’t have a weird reaction to it.  Said my prayers and holding thumbs…

Need help with Crohn’s disease

learning to ask for help when you have Crohn's disease

So I ended up in the hospital for 4 days.  My inflammation marker in the blood test showed it was at 124 where 7 is considered ‘normal’.  That gave me the confirmation that I was indeed as sick as I felt. I wasn’t being lazy or exagurating in any way.

I was booked into hospital where the doctor gave me intravenous cortisone.  My veins kept collapsing when they tried to insert the drip and was extremely painful this time.  I’ve found whenever I have been on cortisone for a while prior to when they try to insert a drip, it becomes extremely painful.  This time was the worst yet.  There were 9 attempts to insert the drip, some of them with me trying to bite back screams.  Luckily they managed to keep a drip in me for as long as I needed to take the medication.

What I’ve learned about my doctor this time was that he actually has a typed out ‘protocol’ form that he gives to the nurses and they didn’t follow it.  He was extremely upset and laid a complaint against them.  The protocol states that the nurses may attempt a drip once and if it doesn’t work they are to call him personally to either come put it in himself or let him advice what to do next.  I really appreciated knowing that my doctor realizes that veins for drips could be a potential problem and have placed this protocol in place.  Now I know for next time to demand the nurse stop and call him.  This time round there was a nurse that was extremely rude and forceful and even though I told her that my doctor said we can leave the drip for the night (after 7 attempts) she continued.  She actually scared me with her attitude and made me feel very vulnerable and scared.  Very sad as most nurses are amazing.

I’m back at work and trying to cope emotionally with my body that doesn’t always feel like it’s keeping up.

Treatment wise my doctor feels we should try Humira injections to try get the inflammation under control.  I’ve always felt it’s more of a dramatic or last resort (with surgery being the very last resort), but strangely enough I’ve come to this time earlier than I anticipated.  I somehow don’t feel like I have the capacity to keep going on like this, so I’m giving Humira process a try.  Next step is to wait and hear whether my medical aid will pay for it as it’s extremely expensive.

In the meantime I’m trying my best to not stress, take one day at a time and look after myself as much as I can.

Great Crohn’s Disease Forum

Found a great patient to patient network of Crohn’s & colitis patients who share stories & tips called Crohnology.

If you want access you can contact me for an invite. Since it’s a new system it’s only open via invitation.
Have about 10 invitations available to me.
Email listeningtomygut at gmail dot com.

What I have found so far is that this forum is less negative than others I’ve tried before so I’m positive so far.
You can share treatments, rate how you’re feeling and it’s all secure in the system and wont be indexed by Google.

Very nice idea indeed.

Elusive happiness and Crohn’s

I don’t like to admit it but I don’t feel happy lately.
I know why I feel this way but some how it doesn’t make me feel any better.

Whenever I’ve taken cortisone and/or painkillers it tends to make me very depressed.  It makes me down, sad and impatient with myself.

This time around it feels like the depression is lasting longer and it feels more intense, which I don’t like one bit.  It makes me feel out of control and as a result my motivation sinks to the bottom of the ocean.  Even the thought of getting a puppy (which always lifts my mood) now might make me smile for a few seconds (if that!).

It really sucks and I’m at that point where it doesn’t feel like venting helps but only burdens the listener.

Not sure when and how I’m going to overcome this depression but it’s time for it to go!