Life Update June 2018

Hey Crohnies!

Long time no blog… I’m sorry! I’ve had a crazy year so far after my January surgery where I ended up being on bed rest for 3 months then panicking to finish the semester of uni because I had to teach myself and it was so stressful! I’ve actually ended up spending the last month trying to recover from all the stress and now I’m feeling much more like myself I thought it was about time I told you all what the last 6 months have had in store for me.

I think it’s probably best to start off where my last blog ended and tell you about my surgery in January. I had to get surgery on my previous wound where my rectum was as I had 3 pilonidal sinuses. This in itself is normally an easy thing to remove but because of all my previous surgeries and the complexity of my case meant I couldn’t sit for 2 months at all then for the second two months I could only sit for little periods so I didn’t hurt more and in total I spent about 15 weeks on bed rest. Sadly the surgery didn’t work as I had more problems with wound healing and now st least 1 more pilonidal sinus has formed which isn’t ideal! They also sent some samples to pathology which came back showing I have a new diagnosis of Endometriosis. This means the lining of my womb grows in my abdominal cavity, like scar tissue, which means I’m in a fair bit of pain between that and my regular Crohn’s pain.

As you can see I looked pretty rough and I spent so much time lying down that I basically lived in bed for 4 months!

While all of this has been going on, I haven’t kept too well in terms of my Crohn’s too as I’ve had problems with blockages behind my ostomy when I eat quite a lot of foods and we’re unsure if there’s intestinal narrowing or if my small bowel is in a flare up so I have been on the waiting list for a pelvic and small bowel MRI… but to get a small bowel MRI you need to drink bowel prep which my body doesn’t tolerate at all so I will also be getting an NJ tube placed before the MRI so they can get the test done properly. I’ve been waiting since the beginning of April to get the MRIs done but I require a specialist radiologist and we want it to be done at my usual hospital in case of any problems with bleeding after the tube has been placed so it’s a long waiting list where I can’t seem to get an appointment yet on!

As I’ve detailed here many times before I have really bad issues with dermatitis under my ostomy bag base plate but as of the last few months, it has spread all over my face, shoulders and back which is pretty painful and it has all started since I developed an abscess on my face at the start of May. It wasn’t a fun experience so I’m incredibly happy that I can hide it under makeup… I don’t deal well without makeup these days! I’ve been to dermatologists and tried everything the recommend which has been so many different creams, lotions, ointments and meds but none have worked so my next step is looking like long term immunosuppressants are the next step. I’m so desperate to get it sorted that I’m definitely considering it!

This is what my abscess looked like… it was so painful!

The last thing I’ve been struggling with is that I keep have had really bad spells of feeling dizzy and faint, alongside having to sleep a solid 12 hours a day which is awful as I’m not able to get through the day without a nap or two so I’m being checked for heart problems and diabetes which could be caused by how much stress my body has been under for the last decade. I won’t like that part terrified me because I’ve already got 2 chronic illnesses and the last thing I want to do is add to that list. I’m just hoping that these issues are caused by my Crohn’s and they’ll clear up as I get treatment after all my tests are completed and I get to meet with my whole team including Gastro, surgical and gynaecology and get a treatment plan in place!

Having all of this going on over the last 6 months has been pretty scary since there’s so many things going wrong but they said that it would probably be all connected and once one reason behind me being so unwell is fixed, the others should follow suit! Now I’m only a week away from my next surgical appointment, fingers crossed we’ll get the MRIs chased up there and a bit of a plan in place.

As usual, my dermatitis is acting up but I’m at least getting used to it now!

In other non health related news… I managed to work from home all semester in uni and for some crazy reason I managed to teach myself my modules and now I officially have my degree and I got some pretty amazing results! I’ve now been offered a place for my honours year and I’m excited to say I’ll be getting my joint honours in Marketing and Entrepreneurship by this time next year. My uni experience has been nothing like I’ve expected it to ever be. I never thought I’d be 22 by the time I started my degree, or that I’d have my first day exactly 3 weeks after my brother passed away, or that I’d have an ostomy for the rest of my life while studying, or that I’d spend the equivalent of a year studying from home because I had two surgeries that didn’t go to plan. It’s insane. You literally couldn’t make any of this up and sometimes think I’m in some weird reality tv show or a made for TV movie at times and even though there have been some mental things that have happened, my life is actually incredibly boring! I am however, so happy that I have got to this point and looking back I’ve no idea how I did it because it’s been really hard trying to work on a LOT of painkillers and I’ve had some incredibly creative essays written on morphine that I’m sure only passed because my lecturers felt sorry for me!

The picture on the right was taken right after my most recent surgery, the one on the life was taken 5 minutes after I received the news I had a degree in mid June this year.

So now it’s summer I’ve been working on a really special project, and that is that I’m writing a young adult novel about a young girl called Winter who is going through the diagnosis of Crohn’s and the need for a permanent ostomy in a short period of time while trying to follow all the usual twists and turns of teenage life including falling in love! There’s a write up in my local newspaper the Clydebank Post and you can read it HERE! I’m really hoping to get it ready to read by the first day of winter but I’m actually hoping to get it published professionally so I’ll be sending off copies when it’s finished to publicists to see what they think. The whole point of writing this book is to give myself a steady income to help me be able to support myself fully through my writing alongside being able to help fund the adaptable clothing line because it is so expensive creating a clothing brand.

So as you can see there’s a lot of stuff going on but I do love to be busy as it keeps my mind off everything although I know that it’s important to take a break in between work so I’m really excited for September as myself and Stuart are having a couple of holidays including a trip to Ireland then Tenerife to stay at the Hard Rock Hotel! We’re so excited to have a month of fun especially as there is an insanely special event happening that is going to change the lives of our entire family…

…My amazing sister in law, Caroline has taken the amazing step to go through IVF and is having my brother, Duncan’s baby! I’m so thankful we have something to celebrate again and I’m absolutely delighted to be an auntie again! This is one special baby and we’re all going to make sure that for the rest of their life they know how much they were wanted and how amazing their mummy and daddy are!

I think I’ve finally caught you all up on everything that’s happening now… I think! I’m so excited to be at a point where I’m able to blog and make videos again, I’ve missed it so much!

I knew I’d forget to mention something… I dyed my hair pink in March and I’ve loved it!

Speak you guys soon,

Jen x

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