First time in a long time

 It’s been years since I blogged regularly. Five years in fact and it seems crazy that so much time has passed. I would love to say that the reason I’ve not written for so long is because I’ve been fit and healthy and out there living my best life but in fact it’s the exact opposite. My health has deteriorated, gradually to begin with but then like a snowball rolling down a hill it’s picked up pace the last 18 months and gotten to the point now where I’m pretty much bed bound most days. I thought now seemed like a good time to start writing again for a few reasons: firstly it’s always been good for my mental health to get stuff out of my head and onto (virtual) paper and with the world in its current state trying to stay sane seems like a pretty good idea. Secondly because my bowel disease seems to be progressing I thought it would be good to keep track of it all so I can look back and have a record. And people used to tell me that they enjoyed reading my blog and if I can help someone going through something similar to know they’re not alone or even cheer someone up through the blog then that can only be a good thing right?

In the last 5 years there have been a LOT of changes. We moved from Hertfordshire to Nottingham (which is where Hubby and me we born) to be closer to our extended families. At first this was quite hard to deal with because the driving factor for the move was my ill health so it felt like my illness even got to control where in the country we lived. But as the years have passed it’s something that I’ve made peace with and it’s been really positive for the kids to be able to spend so much time with their grandparents, aunts, uncles, cousins and even great grandmas. We bought a house 5 minutes from my parents and the support we have had from them has been amazing. The kids primary school was literally across the road from the house and now they’re both attending the secondary school that I used to go to. It was a little bit weird being back there as a parent but the support the school give the kids has been fantastic so I couldn’t ask for more. 

We had a new addition to our family 3 years ago. No! Not another baby- my body is way too wrecked to manage that! We got Buddy, a red fox labrador who has made our family complete.

 Me getting a dog came as a surprise to some of you cause I was never really what you might call an ‘animal person’ but when we told the kids we were moving to Nottingham in order to sweeten the blow of them moving away from all their friends we told them we would get a dog. Hubby and I talked and talked about whether adding a dog to the family was the right thing to do, could we cope with the extra responsibility, what would happen if I was poorly, who would look after it etc. Neither of us had grown up with dogs so we knew it was a huge decision and not one we could take lightly so we spent a long time researching breeds, talking to friends with dogs and thinking long and hard about whether it was the right thing to do. But after looking after a friends labrador for a weekend and seeing the kids with it we decided to take the plunge. If you ask Hubby he will tell you he wasn’t really as keen as me but both kids were going to be at secondary school soon, he was working long hours and I was lonely in the house on my own for most of the day so I think he went along with it to make me happy. But now the two of them are inseparable and can often be found in the evening on the sofa fast asleep together. 

We found a brilliant Doggy daycare place so on the days I’m too tired to walk him or if I’m in hospital and Hubby doesn’t have enough hours in the day Buddy goes there and plays with all his Doggy mates and gets spoilt at his home away from home. 

So what’s been happening with my health? Where do I start? I’ve had multiple line infections and I think I’m now on Hickman line number 11 or 12. Some people can have the same line for 10 or even 15 years so to have had so many in just 7 years is not good and I’m beginning to have issues with access. Each time a new line gets inserted the scar tissue in the chest wall makes it harder to carry out the procedure and the veins that they use are getting damaged. There may come a time in the future where they can’t get a new line into my chest and then they would have to use the veins in my groin. This happened last year when I was an inpatient with a line infection- they had to take the Hickman line out because of the infection and they couldn’t get a cannula in my hands, arms or feet because my veins are sooooo bad so they had to put one in my jugular in my neck. This ended up with a blood clot so it had to be removed and the only place left to go was into my groin. It was not fun, let me tell you so I’m hoping that this line will last me a couple of years instead of the usual 6-8 months.

The line infection wasn’t my only hospital admission of 2020. There were 3 others and all 4 of the stays were in the last 4 months of the year. I experienced my first ever bowel obstruction which is basically when the bowel stops working and everything builds up inside of you to the point where you vomit faeces 🤮💩 This was probably one of the worst things I have ever experienced and I wouldn’t wish it on my worst enemy. I was in hospital for 3 weeks with the obstruction and came close to needing surgery to remove the blockage. Luckily I dodged that particular bullet only to find myself back in hospital 2 weeks later with another obstruction. Thankfully this one wasn’t as serious as the first and I was only in for 2 weeks that time but I was in hospital for my birthday. The nurses on the ward were great and all came into my room first thing singing Happy Birthday; they had even gotten me a card signed by the doctors, nurses and ward staff which was such a lovely gesture. Visiting isn’t allowed in hospitals because of Covid-19 but Hubby and the kids were able to bring cards and presents in for me to open so it wasn’t a totally awful day. 

And just when I thought my bowel had given me enough grief in 2020 when I came home from obstruction no 2 at the end of November instead of getting better I got worse. Things got so bad I wasn’t able to eat without being in pain and I spent all day and night in bed basically trying to survive through to Christmas. The kids were so worried I would end up in hospital over Christmas and I knew that if I was it would be too much for them to cope with on top of everything else the year had already thrown at them. So I grit my teeth, I ordered presents online and counted down the days to Christmas. I know that Covid made Christmas different for everyone this year and we were no exception. Usually we would go to my parents for Christmas dinner but I had spent most of the year shielding and they care for my vulnerable Grandma who had also been shielding so we decided it was too much of a risk to spend Christmas together this year. This meant that I had to cook dinner and looking back now I have no idea how I managed it because I was so, so poorly. I managed to watch the kids open their presents in the morning then I had a lie down for a hour. We popped up to my parents to exchange gifts which we did socially distanced, with masks on for about 15 minutes. During this time I broke down because I felt so unwell and to be honest I probably should have gone to hospital but I was determined to get through the day. I came home, had another lie down for an hour and then with the help of my daughter I made Christmas dinner. The irony of it was that I couldn’t actually eat anything myself so I sat at the table sipping a bottle of lucozade! Once dinner was finished so was I and back to bed I went. I got up on Boxing Day for an hour but was so exhausted and in so much pain I couldn’t even sit so back to bed I went until on the 30th December I admitted defeat and went into hospital. 

Not eating meant I had lost 2 stone in 6 weeks so they started to give me feeds with calories through my Hickman line. But what was actually going on with my bowel and why was I so unwell? I saw two gastro Consulants during my stay and both have different theories as to what the problem is. The first thinks that I may have undiagnosed Crohn’s disease on top of the Ulcerative Colitis I was diagnosed with way back in 2007. Crohns is another inflammatory bowel disease but can occur anywhere from the mouth to the rectum whereas colitis only occurs in the large bowel. Having my large bowel removed should have cured me from colitis but the fact it didn’t makes Consulant number 1 think that I could have crohns and that’s what’s making me so sick at the moment. He started me on IV steroids to try to reduce the inflammation and put me into remission and thinks that a biological treatment like infliximab might be the way forward. 

Initially the steroids didn’t seem to do anything to help and it took over a week before I was able to eat anything but then I started to make small steps forward. Cue Consulant number 2 who had been off over Christmas and New Year. He disagreed with the crohns diagnosis instead thinking that the problem lies with my J-pouch. This is what I have instead of a stoma bag and right from day 1 I’ve had problems with it not functioning properly so it’s possible he could be right. Consulant 2 thinks that my bowel has basically given up and that I need to go back to having a stoma, at least temporarily, to allow the bowel to rest and heal. The thought of having more surgery absolutely terrifies me. The whole reason I ended up with a J-pouch was because my stoma never worked properly and used to block and the bags would leak and it was just a nightmare. So the idea of going back to that is not one I relish. But then if it could give me some quality of life back then it’s something I know I’m going to have to consider should the surgeons want to go down that road. 

I spent 2 weeks in hospital but now I’m home 🥳 I’m still on steroids and still in pain but it’s nowhere near as bad as it was. And I’m exhausted. So exhausted I’m still having to spend most of my time in bed. Having a shower takes so much effort I have to lie down for hours afterwards and last night I cooked dinner for the first time and nearly passed out from the effort it required of me. My aim is to be well enough to walk the dog and to cook dinner each evening for my family. Pretty basic wishes that most people take for granted or even hate doing but for me that’s how low I’ve got to set the bar and shows just how unwell I am. At the moment both seem almost impossible but I know that baby steps forward will get me there eventually.