Crohns and Colitis Awareness Week 2019

crohns and colitis awareness week IBD

So this week has been Crohns and Colitis awareness week (inflammatory bowel disease aka IBD) and our diseases can vary wildly from person to person but some things affect us all. This week over on Instagram I did a post a week with a little snapshot how having ulcerative colitis affected me which I will share in this post.

December 1st – Today marks the start of Crohns and Colitis awareness week! I had to have a rough guess at my medication tally but its definitely around 8! I was diagnosed 2 years after symptoms started. There is the possibility of more surgery but I’m still not sure how I feel about that yet.

moonface from steroids

 

 

 

December 2nd – I don’t have many photos left where I have moon face but this one is definitely one of those times. I am aware my face is pretty rounded anyway but I can certainly see the difference. The photo on the left was about 3 months before my first surgery and I used to drink every day to block out the pain. Due to the steroids I ended up developing an eating disorder and body dysmorphia disorder.

 

 

 

 

surgeries scars

December 3rd – due to my ulcerative colitis I have had 2 surgeries and along with my other conditions mainly hEDS I may need more. The red line indicates the first surgery scar – this scar is about 10

inches long from top to bottom (you cant see the bottom) I had open surgery that lasted the best part of a day. I contracted e.coli and my scar split open twice which are highlighted by the dashes. For a long time someone who was supposed to be close to me made me feel bad about my scar but now you can barely see it.

You can clearly see my ostomy bag on the left of the picture this surgery was done via keyhole and I have three tiny scars plus a drainage scar which you can’t see. My ileostomy changed my life for the better. I wish at the age of 21 I wasn’t so vain as to risk my life by having a jpouch with no temp stoma to allow the bowel to heal.

I am very thankful to my ostomy medical team – my fantastic surgeon Mr Clarke, my stoma care nurses Judith and Mary, the Allerton ward nursing staff and of course my favourite doctor Dr Rashid.

 

My babies December 4th – I want to talk about fertility! There is more known now than when I was diagnosed back 2 decades ago. Certain medications are less than ideal to be on when hoping to conceive and each one is different, nobody told me anything about that when I was younger in fact I wasn’t told about ANY nasty side effects about the IBD meds I was on.

Luckily my partner at the time and I didn’t want kids with each other (we both have kids now) or in my case AT ALL. I was 21 when I had my first surgery and I was told my fertility would drop by around 25% (again not that I was bothered at the time) and if I did fall pregnant I would be allowed to try natural labour for 4hrs before they would operate. I have no idea how they could be that precise but plenty women have natural births with both jpouches and ostomies.

I was 23 when I changed my mind about having kids after about 8 months of being with 00Steve but it would be another 2 years before we fell pregnant with Ra-Ra. I had undiagnosed pouchitis and my pregnancy was not pleasant. Back then everyone just thought surgery is a cure – it isn’t! More on that another day! She was born 17/09/2013 (our 2nd wedding anniversary) 12:52pm weighing 6lbs 6oz at 36w 6d. We were told with how much of a mess my insides were she was a miracle.

We sadly had an early miscarriage with our angel baby Bean. But the positive outcome was we knew we could fall pregnant again as I had only had my permanent ileostomy 5 months prior and nobody can predict it after lots of surgery.

2 months after that we found out we were having our rainbow baby Button who was born 05/06/2017 at 11:26am weighing 6lbs 15oz at 37w 2d. His pregnancy was calmer than his sisters but still painful as there was more scar tissue. I fully believe because my body wasn’t fighting itself anymore it was easier to conceive.

Having IBD doesn’t stop you from having a baby (the meds might ask your consultant they are the expert) but stress and other issues might not help the situation.

December 5th –  but what does a photo of my legs have to do with it? Well that’s because a lot of people have joint issues due to comorbid conditionsthe inflammation caused by their body fighting itself as Inflammatory Bowel Disease is an Auto Immune Disease.

The fact most of us take steroids either long term or short term to reduce inflammation and try and bring about remission from flares doesn’t help either. Sadly my joints from my ankles to my neck are affected and swell up especially in the colder weather not just from the Ulcerative Colitis but from the Hypermobile Elhers Danlos Syndrome I have been diagnosed with in the summer.

I have had both all my life and the EDS runs down my Dads side of the family or at least hypermobility! My IBD only showed up at 10 years old but I’ve always been a bit more flexible. Due to the type of meds I have taken over the years they have increased the hEDS and that means my joints like to lock or attempt to dislocate. I literally sound like I’m going to break when I move!!

Do you have joint issues related to your IBD or like me and The Spoonie Mummy (who has RA) do you have a separate comorbid condition?

Chronic illness and socialisingDecember 6th –  I want to talk a little about how IBD can affect you socially. So being sick from such a young age definitely affected how I interact with people. Many people who grow up with chronic illness often find it is like a double edged blade – you become either too trusting due to holding your faith in adults eg Drs or nurses or you close yourself off. This in turn can affect how you act with people either individuals or groups. I am either very loud or very quiet and I often don’t know when not to be one or the other. This makes life fairly awkward for me.

For instance I get nervous in large groups and prefer to stick to small groups of people. I have had (to quote “High School Never Ends” by Bowling For Soup) the same three friends for 20 years. Then five friends in the last decade. Then I became friends with pretty much all of the mums in Ra-Ra’s year group which was a shock because it’s a large group. I obviously have a small group of my dance moms. Then these crazy cats in the photo from the Velveteen Rabbit Luncheon Club

Not everyone is going to like you and that’s okay. The main thing that matters is you like yourself and for me it took 7 years after getting sick to think “yeah I’m an okay person” and at 23 I decided I wasn’t going to shrink myself for others approval. At the grand old age of 32 chronic illness has taught me many things and the main thing is that good people gravitate to good people and bat shit crazy ones will stick around even when times get tough and they are the best kind of people.

December 7th – for the last day I wanted to talk a little about day to day life with IBD.

• fatigue – this can be absolutely brutal and really ruin your day, your week or even your year!
• lack of energy
• brain fog – the struggle is real with this one!
• comorbid conditions
• not knowing your trigger foods – I didn’t know about trigger foods for way too long as there wasn’t the link there is now
• going to the toilet numerous times a day and passing blood and mucous, either having diarrhoea or constipation
• the crippling pain
• looking well and people not believing you but they certainly would if they saw your insides!
• your mental health can be severely affected

Days out like this can take so much out of you so we honestly treasure them when we have a good health day.