My Crohns Story - Part 2

By 22 I was back in Birmingham, newly single, working at a local pub and living with some friends, I was really enjoying my time. And I was planning a month long trip to visit my brother in Australia who I hadn’t seen in a couple of years. It was about a week before I went to Oz that I started to feel ill I thought nothing of it and powered through, I went to Oz and I struggled, I struggled to eat to keep up with all the things that my brother had planned but I did it because I was so excited to be in a new place and to see him. When I came back I continued to struggle with pain and exhaustion, I continued to work because I had bills to pay. The hospital was changing my medication but nothing was working, it wasn’t until a couple of months later, it took my boss to send me home from work and he told me not to come back until I was better. The next day I took myself to A&E and they admitted my then and there. I was mortified I didn’t want to be admitted I just wanted something to for the pain, I was supposed to go away that weekend to Blackpool for my sister in laws hen do, I would of still gone as well for fear of letting her down,

I still believe this is the worst my health has ever been to date. I lost nearly two stone in weight (I was down to 6 stone) I was so malnourished that they had to give me food gradually in fear that too much food would shock the system. During this two week stay they ran some of the usual tests and realised three sections of my intestines that was cause for concern, they were ulcerated and inflamed. They had a plan, the main section that caused concern was where I had on surgery several years previous one this section they performed a balloon dilation (which is very similar to a stent in the heart) They inserted a balloon into my intestines and used a balloon to stretch out this section. We had also agreed to try some previous treatment again (the infusions where I initially had the allergic reaction) as the formula has changed slightly and they were confident that this would now work. Which it did, for about a 18 months..

This February I was once again in hospital, again I was well for quiet sometime but the passing of my grandad and seeing my nan become ill was clearly too much for me to handle. I was starting to notice a pattern every time I went into hospital there was some stress or trauma beforehand. When I was 13 it was school, when I was 17 my parents had separated, when I was 22 I has spilt up with my long term boyfriend (which initially I coped with really well until I was drunk one night at an engagement party and was scrolling through facebook to see he now had a new girlfriend, a girl who I was suspicious of while we were together, yeah I didn’t deal with that well) and now a grandparent passing.

This time when I went into hospital I was a lot worse than I thought, I only went for a general appointment but the doctors where so concerned they admitted me. This was the first time I recall being on a drip for vitamins and minerals due to malnourishment, I felt better quiet quickly as another change in treatment was issued I was changed from one infusion to another as it turns out my body built up antibodies to fight the drugs.

Which brings us to now..The same thing is happening again, my body is building up antibodies to fight the treatment, not work with it. Good going aye. And as of yesterday it has been confirmed that a second surgery is now needed. There are two section that are inflamed one in my small intestine and one where the join is from the small intestine to the large (this is where I had my previous surgery). The plan is to remove both of these and the bit in between as they are quiet close together and re-join the healthy bowel together. All that’s left now is to meet the surgeons, who I already know from my previous procedures, and set a date which will be in the next 3 months. So now I just got to wait and stay as healthy as I can so that I’m strong enough for surgery. Which may be difficult but I’ll definitely try and although the idea of surgery sounds daunting I’m quite happy with this plan, the fact is there is a plan and I feel I’ve needed surgery for a while now I was kinda just waiting on the doctors to say when. And I’m very optimistic for after. After my last surgery I was the healthiest I’ve ever been for a good 18 months. I’m excited to feel that way again.

In a weird way I’m grateful for what I’ve gone through, this illness has taught me so much about my body and myself which I would not have no known. I am a lot stronger then I give myself credit for, I am much more understanding and compassionate and I work a lot harder for what I want and although whatever I want will take me a hell of a lot longer than most to get there if I’m determined enough I will get there.

This blog is for all of those who think Crohns and Colitis are just stomach problems. For those who have loved ones that suffer with these illness’s be sympathetic, there’s a lot more going on than you realise, they are putting on a brave face for you. And of course this is for those with Crohns and Colitis who have suffered/are currently suffering to let you know, you are not alone! We can get through this together and we will xxx

Side Notes

Between 18 – Present I realised that Crohns causes a lot more complications then just with your stomach. As it’s classed as autoimmune disease meaning the immune system attacks and destroys the healthy tissue in the body. This has led to a lot more complications than just what you see e.g cysts on my eyes, tonsillitis, shingles, erythema nodosum, problems with my joints, my hands, my back, anaemia, fatigue and weak bones in general.

List of medications (Not in any particular order) – Pentasa, Azathioprine, Mercaptopurine, Budesonide, Vitamin B12 Injections, Methotrexate Injections, Humira Injections, Infliximab Infusions, Vedolizamab Infusions and of course the infamous Prednisolone (Countless times)

Links to Crohns Websites (For those of you wanting to learn more or want official explanations) –

https://www.crohnsandcolitis.org.uk/

http://www.crohns.org.uk/

http://www.nhs.uk/conditions/Crohns-disease/Pages/Introduction.aspx

My Crohns Story - Part 1

My explanation of Crohns. This is the description I give to me when they ask me what my illness is. I say that it doesn’t usually affect my on a day to day basis (a little white lie). But when I get ill, a number of things can happen mainly I can have ulcers throughout my digestive system or my intestines become inflamed and swell up. A hell of a lot of symptoms occur with this but this is the easiest way I can describe it, I understand this isn’t very informative but it’s the basics.

Let’s start at the very beginning. My diagnoses. In all honesty I don’t remember a lot about this. I was diagnosed with Crohns around my 8th birthday. I think I was suffering for a few months before diagnoses. I have a couple of very specific memories of feeling ill the first is of myself at dinner with the family and my mom had cooked spaghetti Bolognese I remember having just one bite and it caused pain so I spent the rest of the meal just pushing the food around my plate to make it look like I had eaten much more. I also recall Christmas day. I was lying on the settee in excruciating pain, I couldn’t move and my brothers had to pass me my presents and help me open them.

The main symptoms I recall was stomach pains, from the smallest bite of food, even from drinking water, I was being sick a lot, I was extremely tired and had no energy and my hair was falling out (which I didn’t know at the time as I was still at the stage of my mom doing my hair). So after a few months of extensive tests including endoscopies, colonoscopies, biopsies, bariums, X-rays, Ultrasounds, EUA’s (Examination Under Anaesthetic), White Blood cell scans, Blood tests, Urine tests, MRI scans and MRE scans I was diagnosed with Crohns Disease. I had no idea what this meant. I was way too young to understand this. All I knew was that it was painful to eat so I didn’t want to eat. Simple. Be careful what you wish for..after I was diagnosed I didn’t eat for 2-3 months. I was given a NG (nasogastric) tube, which is a feeding tube, it is inserted through the nose and goes down the throat into the stomach. I had to have this tube in constantly and for 22 hours a day I would be hooked up to a machine which would pump through a feed made up of all the vitamins, minerals and healthy calories my body needed in order to recover and become healthy again. This along with some strong medication did indeed do the trick and I remained well and virtually symptom free until I turned 13.

As if being 13 years old isn’t hard enough, with school, puberty and boys, I also had to start worrying about my health. By this time my medication had changed a couple of times into a slightly stronger tablets, but from what I recall my symptoms came on pretty drastically. As in within a couple of weeks I went from being as healthy as someone could be to my mom driving me up to the hospital in the middle of the night because I was in so much pain I couldn’t walk, I couldn’t keep any food down, it even got to the point where I was bringing up my own stomach lining because there was physically nothing else to come up.

A week or so later I was due for surgery. I was in the theatre for over 4 hours. The operation itself was called a laparotomy, during this operation I had about 20 inches of my intestines removed as they had become so ulcerated and inflamed they had actually collapsed on themselves and far beyond the point the point of medication doing anything. The part of my intestine that had been removed was the terminal ileum, which the connection joining the small bowel to the large bowel

It was at this point I started to realise the severity of my illness and that I was going to have to learn how to look after myself. I had 3 months off school to recover from this operation, I had another change of medication and went back to having the NG tube but by this point the feed that went through the tube had been modified so that you could actually drink it in little 300ml ‘milkshakes’. So I would have 6-8 of these a day along with the NG tube at night (by this point I had learned to pass this myself). When I went back to school after the April half term I remained well again for at least 18 months, and I mean extremely well.

For a few years after I still struggled with what me and my family would call blips. Where I would have a few weeks of being bad but then it would resolve itself by either my liquid diet or change in medication, the medication was getting stronger as I was getting older, I started having to give myself injections (A list of medications will be supplied at the end). This was the worst of it until I turned 17 I when I ended up back in hospital. Twice.

I was in for ten days was out for a month back in for another ten days because I hadn’t recovered properly the first time. We believe this was caused by stress ‘at the time my parents had split up a couple of weeks before’. I didn’t cope with it too well, this was my body’s way of telling me I need to deal with things and voice myself, cry, whatever so that I don’t bottle thing up and cause this damage to myself. Another change in medication occurred I was now given infusions (I would be on a drip for a day) administered by the hospital. To this day I think this was the most dramatic turnaround I have ever experienced, after my first treatment I got home had a 20 hour sleep, woke up and felt incredible. Unfortunately although the feeling remained I was only on the treatment for about 6 months as I had an allergic reaction where my temperature rose dramatically after that I taken off this treatment.

I was now due to change hospitals. I was 17 and had been looked after by the Birminghams Childrens Hospital for nearly ten years. I was incredibly lucky to have this kind of care on my door step. I was now being transferred care between two hospitals to Derriford Hospital in Plymouth (I was due to go to uni in Plymouth) and Queen Elizabeth back in Birmingham for when I needed treatment during the university breaks. During the ages of 18-21 (my time at uni) again I suffered with blips and other side effects of Crohns but nothing that a quick medication change for my liquid diet couldn’t fix.