Hey Crohnies and Lucky Coiners,
I get asked a lot of questions quite a lot… from questions about my personal life to Crohn’s to starting a business so young to having an ileostomy (bag) so young to embryo freezing to going to uni so I thought I’d take the opportunity to answer some of them here!
What is Crohn’s Disease?
Crohn’s is an incurable autoimmune disease which mainly affects the intestines and digestive system, your immune system starts attacking your organs causing inflammation (Crohn’s is a type of IBD – inflammatory bowel disease) because it can’t tell healthy cells from bad cells with varying degrees of severity.
When were you diagnosed?
I was 13 when I was diagnosed but I had severe symptoms for about a year before and some symptoms I’d had all my life and basically don’t remember a time before I had pains in my tummy.
What treatments have you tried?
All available medicines on the NHS I had tried, my main meds over the years were Azathioprine, Methotrexate, Inflixumab, Humira and trial drug Andante which Pfizer withdrew from trial in 2014. During this time I also had 8 years worth of steroid treatment (both iv and oral).
What is an ileostomy?
An ileostomy is similar to a colostomy and it is an opening in your abdomen in which your small intestine is brought to the skin and folded back on itself to create what is known as a stoma. From this you poop into a bag which basically sticks over the stoma to collect your poop which continuously comes out. It is given normally when you either have a temporary ileostomy in which you have part of your large intestines removed and needs a chance to recover before being reconnected or a permenant ileostomy and have no large intestines.
This is what my stoma looks like!
Will I ever get a reversal surgery and get rid of my ileostomy?
Sadly for myself I have a Bag for Life which means I have no large intestines to reconnect and I’m awaiting surgery to remove my rectal stump and anus which will leave me with nothing to reconnect as my intestines were in a really bad condition.
How severe is your Crohn’s?
I was discribed my my pediatric IBD nurse as being one of the worst cases in Scotland and it has only been proven time and time again. I have basically every complication they warn me about before they start a treatment.
Why are you getting your anus removed?
I am getting it removed because at this point in time I am bleeding from it constantly. If I don’t pass the blood it tends to flood out in awkward times leading to embarrassment and also keeping me anaemic which will lead to needing at least 1 blood transfusion during/after surgery. My rectal stump was also falling apart after my ileostomy surgery, this meant that he staples used to close that ripped out and travelled through my abdomen and led to 4 of them poking out my stoma! After that a leak of intestinal mucous and blood pooled in my abdomen and led to me developing sepsis.
What will your bum look like after surgery?
It’ll look completely normal from the outside, my cheeks aren’t going anywhere, I’ll just have my bum hole stitched up and it’ll be what I like to describe as a massive gooch! Haha!
What’s it like having a stoma?
It has been tough I won’t lie. I hated my stoma for the longest time and still don’t feel completely comfortable with it (for example id never feel comfortable leaving my bag off for a shower). I am however learning to deal with it mentally and it doesn’t freak me out anymore!
It is strange because even though it has no nerves and the stoma has no feeling I am always very protective of it and I am always hyper aware of anyone being near it. It isn’t painful when food comes out unless I have a blockage or am dehydrated and the poop is really formed as this tends to give me a really sore tummy. My skin isn’t great now under my bag, that’s the red bit around my skin in the picture above but I have a system that every night I change it, clean it and let it dry with steroid cream for an hour and that is helping so much!
The bag is easy to deal with when it comes to emptying as they have a Velcro opening that can be unfolded to empty the bag and emptied into the toilet between my legs and the folded away once I’m done. It is also ridiculously easy to hide under clothes, it is really flat most of the time and is so discreet no one has ever guessed I have a bag unless they were told.
What does the bag look like?
This is my little bag yesterday. It looks kind of big here but this is the midi size. There are also bigger ones for after surgeries or at night when I’m ill and there are also tiny ones for under dresses and for swimming etc.
Was your boyfriend not put off by it?
I can’t speak for Stuart myself but from what he’s told me, my Crohn’s and ileostomy have never been a problem for him. He doesn’t think about them as negatives of being with me, they are just part of me that can’t be changed. I did ask Stuart once if he stayed with me from obligation and he told me he definitely wouldn’t be with me if he didn’t want to be! (1,2,3 … Awwwww! ❤️)
How did you and Stuart meet if you can’t get out much?
Basically I met Stuart 3/4 months before I got my surgery to get my ileostomy and I didn’t get out much and really meeting someone wasn’t high on my priority life but I had been recommended Plenty of Fish the dating site as a way to chat to new people and see what happened… a lot of weird questions later Stuart pops up in my chat and says hi and after talking for a few weeks I met him rather dangerously on a Friday night outside the Cathouse Nightclub as he was on a night out and I was on my way home from a friends… I just felt I had to meet him and ever since we haven’t been separated and we just celebrated our second anniversary!
How have your parents been since they discovered they have a crohnically sick child?
I know they struggle a lot with it. They have always said they wish they could take my pain away and take it themselves which I find really sad. It was a huge learning curve when I was younger and I had to have my mum organise my medicines for me up to 8 times a day, my mum and dad had to prepare my milk because I was tube fed for a few months and having to learn how to store injections alongside watching me suffer a lot.
I can’t even count the number of days they’ve spent at the hospital with me, basically their lives revolved around my Crohn’s for the longest time and to an extent it still does. They’re still heavily involved in my day to day care since I live at home but I know that after surgery I’ll be completely dependant on them and Stuart and I know that they find that hard to watch although they do everything they can to get me better.
I don’t know how they do it because they are so strong for me all the time but I know it breaks their hearts whenever I have another set back which is pretty much all the time.
What are your day to day symptoms?
Every day I have pain. It is basically my life as I have been told now that it is not about getting rid of my pain, rather than making it not hurt enough so I can get on with my day and not get depressed about being in pain so I’d say every day I’m about a 4 on the pain scale. This is due to having scar tissue and inflammation in my abdomen and also my bones hurt due to the long term steroid use that caused my bones to become crumbly at the joints.
I also have a lot of nausea because most of the medicines I take for my Crohn’s irritate my stomach. This can lead to heartburn or me being sick a lot which drives me crazy because the only antisickness medicine that works for me can counteract with my sleeping tablets and painkillers to slow my heart rate and cause me to need to go to hospital!
I also have ostomy bag leaks a lot, I usually leak about 5 times a day but now I have my routine I’ve only leaked 2 times in 3 days!
One of the strangest Crohn’s things I have is that I am really susceptible to abscesses and I have a really bad recurring one at my groin which I’ve had removed multiple times but it keeps coming back so I’m either in pain from the abscess or I’m feeling sick from the antibiotics to try and help the abscess! I can’t win!
I’m also permanently exhausted. My body works much harder than an average persons so I tend to be constantly tired no matter how much rest I get because my body is struggling with all its extra problems.
The last few months I have also developed asthma and hypoglycaemia meaning I am struggling to breath often and get very faint from not being able to get enough oxygen in the time it takes my inhaler to work and I also have to monitor my blood sugars as they are very low a lot of the time. This is probably due to me not absorbing the sugar from my diet very well due to the scar tissue in my intestines and basically I’m probably not getting enough in my diet anyway.
Have you seen this article about how marijuana cures Crohn’s?
The fact this is illegal means it could seriously jeopardise my care and leave me in a position of mistrust with my team of consultants, surgeons and nurses. Thank you for caring but my health is too important to me to risk it on something illegal that would jeopardise that relationship with my caregivers. If over time it becomes legal here and I am told by my own team it is of benefit to me I would gladly take it but I personally won’t be interested in taking part in any more drug trials at the moment.
Following from that, why would I not be interested in being part of a drug trial?
Most of you who have followed my journey for the last few years will know I was in a year long trial of the drug Andante that Pfizer (the pharmaceutical company who produced the trial) withdrew from trial and compassionate extension and took me from feeling better than I have in about 7 years to then getting my ileostomy which was really scary for myself. My experiences with the trial totally changed the way that my consultant deals with trials because he will no longer accept trials for patients that would not allow them to stay on the drug long term if it works for them. So I really just don’t want to get involved just now because it was a hard time for me previously going through it. However, if the right trail drug came along I wouldn’t ever say I’m definitely not going to try it just because at the moment I’m not ready to go through it again and deal with potentially receiving a placebo for a few months.
What are your hospital essentials?
Okay well let’s include the obvious stuff like stoma supplies, meds and pjs and undies but then add in daytime clothes if I’m feeling fancy and not in pain I’d normally have jeans and t shirts, also leggings, joggies, hoodies and lots of hair ties.
Then I’d have my phone, laptop, chargers, notebooks, uni work (unless it’s summer). I also need snacks and stuff like sweets, crisps and bagels. I also have to get my dinner brought up every night because hospital food is so bad it makes me sick. Every. Single. Time.
What’s the hardest part about being sick?
For me it’s hard to talk about it but mainly it’s so hard to watch everyone else my age get to live a full life that isn’t in hospital constantly and they’re moving on but I’m still stuck in this weird 2007 life changing bubble.
I really just hate how the world keeps turning but I still stay the same old Jen.
What’s actually happening with the first line of CrohnieClothing?
Currently I’ve been designing all the clothes I want and their adaptations. It’s hard to try and get manufacturers to take you seriously when you’re a young person. They definitely don’t expect me to have a clothing line and think I’m just taking the piss out of them so I get a lot of non responses after meetings or phone calls (I’m talking to you glasgow based manufacturer who never called me back when I was ready to place an order…)
So yeah just now with going through fertility treatment, being ill, having uni and surgery coming up, it means that the business in the sense of proper manufacturing isn’t my top priority. However I promise that when the clothes are available they will be completely worth it and I’m going to be proud of it.
What would you say to describe Crohn’s to someone who doesn’t have it?
… I’ll give you a big clue. The gut busters from Alien were based on Crohn’s pain.
It does literally feel like you’re being ripped apart from the inside.
Why are you going through embryo freezing?
Because my surgeon believes there’s a chance of damaging not only me Fallopian tubes but also my egg sac’s but not damage my womb since my surgeon is going to do everything he can to make sure I can carry a child.
I basically think it’s really important to myself and Stuart to have a child that is genetically ours If we’re able to and preserving my fertility is one way to do that.
Can you get embryo freezing on the NHS for your condition?
Apparently we could get embryo freezing on the NHS if either of us had cancer. However due to myself not having that we have had to pay £3,500 for embryo freezing.
How can you afford that?
Basically myself and Stuart’s student loans are paying for it but I was able to get discretionary funded for £3000 of the money for living costs.
I think this should be enough for now! Thanks for putting up with these questions so far, check out part 2, coming out soon!
So guys I won’t bore you anymore, any further questions you have please get in touch and I’ll be more than happy to answer them!