My Story

:heart:June 2010 and was just finishing up my fourth year in secondary school aged 16. Went to bed one night with a bad cramp in my stomach but fell asleep and thought nothing else of it until it was time for school the next morning. Doubled over in pain my mum decided to keep me at home as I could barely stand up straight with the pain. After several hours my mum decided to bring me to the doctor who said "it may possibly be just constipation!" I thought not! And she reluctantly decided to send me to A&E. Once there I began throwing up as I was in so much pain at this stage. An ultrasound was done and they decided I needed an explorative laporoscopy.

Several hours later I woke up to be told that my appendix had been removed and they questioned diverticulitis. Sent home 2 days later with no antibiotics and a week later I woke to the same excrutiating pain I'd experienced first off. Mum was already in hospital with my youngest brother who had pneumonia so Dad brought me straight back to A&E where I was put on augmentin for 2 days and sent home again.

For the next 3 weeks I was downing several ibuprofen and paracetemol everyday as I had a constant pain in my stomach. My mum was getting seriously fed up at this stage so my GP referred me to a consultant in a hospital further away from home. On first appointment he decided he wanted me into hospital the next week for a CAT scan. This ended up showing a large abscess on my bowel, hours away from bursting. A drain was put in straight away which I had for 5 days as it drained the abscess and was sent home on 3 different antibiotics for a month.

The next year and a half showed me losing a lot of weight and no appetite. I had no issues regarding diarrhoea or constipation, just frequent belly aches. One Saturday in January 2012 after coming home from study in school (studying for my leaving certificate), I had excrutiating pain in my stomach again, vomiting and so weak. 2 days later I was admitted again for more tests. Barium test, ultrasound, CAT scan, and nothing showed up. A new consultant then recommended another exploratory surgery to see what was going on so I agreed, full sure there was something seriously wrong at this stage.

After the surgery the consultant still had no answers but I was in the worst possible pain imaginable, not even able to pee because my body was so cramped up. After 3 days of sweats, chills, pains and no bowel motions they decided I needed another CAT scan. Waiting for the results the nurse came in with a gown and said put this on we need to get you straight through for emergency surgery. Turned out there was another abscess on my bowel and needed to be operated on immediately. This time I was also given an epidural so I wouldn't be in as much pain afterwards.

Several hours later I woke up in ICU hooked up to my epidural, NG tube, catheter, another drain and an array of IV drips. A few days passed where my liver and kidneys began to fail, allergic reactions to morphine, pethadine and antidotes. I honestly at this time believed I wouldn't make it!

I was moved to a single room after a few days and finally told what I had been suffering from for the last 2 years. After removing 42cm of my bowel they discovered it was Crohn's disease!

At this stage I had lost a serious amount of weight, dropping to nearly 6 stone at one point. I was sent home on 3 Ensure shakes a day for 3 weeks, a huge amount of antibiotics and no dignity left!

Today I'm a 20 year old woman still in remission, a third year student nurse and feeling great apart from bursts of fatigue! B12 injections every month are the only medication I see and I feel like my whole experience has definitely added to my love of being a nurse and I can definitely empathise with patients.

I truly believe my journey has shaped me to be the young woman that I am today!

Sorry it's so long!

Hello, Welcome to the forum!

You've certainly had quite a time of it but you seem to have a great attitude which is brilliant.

Am I understanding correctly that you aren't on any medications for your Crohn's at the moment? If so, do you mind me asking why? Its widely accepted that patients have a lower risk of post surgery relapse if they are taking some form of maintenance medication.

Take a look at our young adult support group where you'll find lots of support from people of a similar age. You might also want to have a look at the healthcare workers support group where you'll be able to connect with others who understand the unique challenges of dealing with this condition in a health care role.

As someone who hopes to train as a nurse myself (health is currently not stable enough so occupational health won't allow it) I can tell that you are going to be a great nurse, you have a lovely attitude and yes, you will have a lot of empathy for your patients. It makes a lot of difference when we have compassionate nurses and there's no-one that understands that better than those who are often patients themselves.

My consultant said because the diseased part of my bowel was removed the need for medication right now doesn't need to be an option.

I did suffer a really bad episode of fatique last christmas where my whole mouth was destroyed in ulcers but she felt it was a virus. She has mentioned that she would like to put me on immuno suppressants soon but to be honest I think I'd rather try and control this myself for as long as possible before going down the medication route. Especially with the plans I have for the future I really don't want to become reliant on medication this young into my life.

In saying that I'm sure if I began to flare in the morning I would want to go on meds but for the time being I feel I'm managing fine.

Thank you for your lovely response!

I understand wanting to stay off meds but I urge you to be careful. My previous consultant said the same thing to me after my surgery, he was convinced I didn't need any meds and would be fine. I wasn't so sure, but we trust our doctors.

A year later, I landed myself a two week hospital stay, that was in June and I'm still flaring. I have a new consultant, who says at the very least I should of been offered the choice and monitored better.

I know the meds have a lot of side effects and since you're almost a qualified nurse I'm not going to lecture you but please just be careful. Crohns can be causing damage without us feeling a thing. Surgery to remove the affected area only removes what's already damaged, it doesn't stop the action that damaged it. Crohn's is sneaky and can come out of nowhere, so keep your eye on it.

I would rather take maintenance meds than end up with a full blown flare.

Thank you for such a positive post. I've had a couple of moments where I "believed I wouldn't make it" recently as well. It gives you a different perspective on things. I'm sure you'll make a great nurse!

There is nothing wrong trying to go med free. IBD can be quiescent sometimes for years at a time. The key is you need to monitored like a hawk. Routine visits, exams, blood work, maybe even a baseline, off meds look via scope or at least imaging to see where things stand.