March 2016

March, boy have you been dreary.

I’ve had the delightful experience of my colonoscopy this month and its outcomes have yet to be discussed with me between my two doctors – my consultant and the surgeon. That is happening in the next couple of weeks before I go away on holiday for my birthday with the boyfriend. I’m hoping for some clarification on what is going to be happening and when.

My scope did show a almost 100% clear colon with only really bad disease located in the terminal ileum and small bowel – which was expected to a degree but shocking because of no disease in the colon; where it has always been since day one. So clarification in what was shown on my last MRI and this new scope need to be explained to me. The surgeon did write and tell me that he would want to now do a limited resection seen as my rectum and colon were clear. So surgery is still going ahead as planned. 

I’ve come off my steroids completely and had little to no fall out from them. In fact, since the scope I was feeling quite well, with minimal pain and problems. That all change a couple days ago when the pain returned along side a lower appetite and very painful and frequent BMs. They have rendered me fatigued and in desperate need of a surgery date so I can get back to feeling better. I’ve had almost two months of waiting and sitting around unable to work because of my illness and I’m getting abit impatient. 

So March has passed in a blur – as it always does when you have little to focus on – and I am hoping April I am able to get booked in to get my section of diseased insides removed and enjoy my holiday in Cornwall. It might be the last break / treat I have for a long while. 

  • I return to my consultant on the 5th for an update on all accounts. 
  • The following week, the morning we are due to travel down to Cornwall, I see the surgeon to discuss the “limited resection” and what that would mean, I am hoping once this is all sorted he can give me a date. Probably a long shot – more Junior doctor strikes are planned and will mess up the surgical schedule – but I need something to look forward to! Morbid, I know, forgive me, but I’m reaching the end of my tether. 
  • Cornwall! The sea! A spa! For seven whole days away. 
  • Crohn’s group meetings and sorting that all out for when I am out of action. Uffft.

new-signature

 

February 2016

February, boy has it been a turbulent one, on the health front. For the past couple of bleary months, I’d been expecting my treatment plan to fail. I was looking at a last chance saloon with Vedolizumab as soon as I started it way back in October, but to have it official fail on February 5th was abit of a shock. It meant I had to kick my butt into gear and get something else sorted. Which had to be something I had yet to try, something outside the realms of conventional medical therapy. I should have known it would […]

Continue Reading

January 2016

The beginning of the year is always difficult. I have, for the years I’ve been diagnosed with Crohn’s Disease, been able to avoid any major problems at the festive period; even when I was first diagnosed and just having started Humira without a clue how amazing it would be. So I came into January unsure; of what this whole year would bring me, how quickly I would find a new treatment plan and how rubbish I would have to feel to get to that point. On NYE I got my appointment to see a surgeon to discuss – very briefly […]

Continue Reading

Hello 2016..?

I started 2016 in pain, surprise surprise! I slept through all the new year celebrations, awaking groggily in the morning, trying to find some strength. Why would I need to find strength knowing it was a Bank Holiday weekend, I hear you ask? Well, I’d received a letter the day before; a consultation with a new doctor at my hospital, a surgeon I found out once I’d Googled him (something I don’t like doing but curiosity was killing me) and I was going into over drive as to why and boggled by the short notice. Was something wrong? Was I […]

Continue Reading

2013 in review

This blog turned one year old on the final day of 2013. Those sort of moments tend to allow one to reflected on the past twelve months. When I consider how long and short ago January 2013 was, so much has happened! Here are my highlights. The big achievement for me was not getting admitted into hospital. When I was taken off my Humira injections and left with medication options that didn’t work for me, I seriously wondered over the summer how long I could last without admission. It had been a rough spring for me, I had to cut […]

Continue Reading

25

Today, April 16th, is my 25th birthday. Now, more than ever in my life, I get told I do not look my age. Currently, many people think I am hovering around the 20 mark. This has provided my parents with much glee, as they get told they are not old enough to have a 25-year-old daughter. I guess that makes up for all the times when they were always told they were not “old enough” nor “prepared enough” to have a very sick daughter. I can’t help but feel wistful today. Mostly because there isn’t a day that goes by […]

Continue Reading

“… The best you can”

I find myself relating this more and more. In the start of Crohn’s and this “adventure”, I thought I was going to be one of those patients / sufferers that was always honest about everything. But I soon learned a very important personal lesson. It is simply exhasuting doing that. Put simply, life gets in the way of being honest. Not everyone wants to know the details of your life, be it whether or not you’re in pain. Constantly being asked if you’re okay is frustrating and very irritating. So you start to just say that dreaded word “fine” and […]

Continue Reading

Hi my name is Louise

And I have Crohns Disease. But you probably already knew that. Crohns disease affects my life every single day. If its not my awfully cranky guts or my sore butt, its my joints and my fatigue. Its an ongoing battle and maintaining my remission is often draining – both physically and emotional. I am often fraught with frustration and anger, because nothing about CD is fair. It is utterly life changing and feels like a problem child. Despite this, I’ve learnt so much about myself this past year. I’m stronger because of my condition. I’ve changed and I think its […]

Continue Reading

23.59 00.00 00.01

The whole philosphy of everything must or will change once the clock strikes tweleve and one day – and here, one year – ends and another begins.. This blog is primarily for my Crohns journey and will continue this way into 2013, but I want to be ambitious enough to add new features and posts to my usual blog content. I hope that my health will allow me to take advantage of the time I have to make this happen. But as I’ve learnt this year, my crohns can’t be tammed in an instant. Nor can it be “fine” every […]

Continue Reading

2012, a recap

We’re here, the final day of 2012, and I am sat realising that this past year has flown by yet again. That feeling doesn’t surprise me, but the lack of fear I have about the year coming up does. I started 2012 extremely unprepared. I had just finished a couple of weeks stint in the hospital, had just started Humira – yes, its been a whole 12 months of needles in my thigh and monthly blood tests – and was extremly cautious but keen to start 2012 without any further admissions. I kept my promise, I’ve had no mishaps that […]

Continue Reading

NYE – New YOU Entirely

In true Louise fashion, the dawn of the new year had brought up all the emotions regarding my review in three weeks with my gastroenterologist. I spent last winter in and out of the hospital because without fail, my guts decide it wouldn’t be too horrible for me to go without some sort of hospital visit; be it a day in for a procedure or a check up, bloods or a short stay. This year, I’ve remained healthy, and for the most part that is due to my care into maintaining my remission. It is the combination of taking care […]

Continue Reading

You can quite definitely tell that Autumn is upon us here in the UK. I am currently on my holiday week off from work, with very little energy to want to go out in this cold weather and destroy all that hard work I’ve done to build up my immune system. It’s also giving me plenty of time to reflect, for September, especially the dates of this week, are poignant. A year ago, give or take a couple days, I was back in the hospital for my second flare up of Crohn’s. It is also the birth of this very […]

Continue Reading

“Remission”

In Crohn’s literature, remission is a term not vastly used, unless talking about the predictability of it when a patient is taking a certain medication. It is defined as ” the state of absence of disease activity in patients with a chronic illness” and then adds; ”with the possibility of return of disease activity”. I, for one, have servere Crohn’s Disease and take bi weekly Humira injections at 40mg to keep my symptoms at bay. For me, remission means not pooping more than twice a day and a pain free belly. I could also add in no achy joints, but that makes it […]

Continue Reading

Happy Birthday dearest Bernie..

I have just come to the end of a full week’s worth of work, so apologies for the lateness of this post. Friday was my Crohniversary! I sadly spent it doing what I only wished I was doing a year ago; being at work. September 7th 2011 will always stick in my head. It was the day they shoved a camera up my backside and told me I had Crohn’s. It was shocking and scary, my experiences of Crohn’s up until that point was through my disastrous ex boyfriend, who spent lots of time before and during our relationship denying […]

Continue Reading

June 2012

This month, alot like the others, has flown past. It’s now July, the seventh month of the year.. and I can’t quite believe it. It’s been a busy month. Been at work almost all month without incident or pain. One day caused me to leave work early, but par that, I’ve been symptom free again this month, just a little bloating and uncomfortable moments, but they soon pass. I visited the Day Hospital at Good Hope on the 12th and received my first Iron Infusion, which went well. It took almost two weeks to kick in and give me the […]

Continue Reading

It was December 15th and I finally felt good. I was a month out of hospital and just had a Humira injection – one of the first amazing few – and was home alone. I came upstairs into my room and got my make up out. It had been months and months since I had even opened the bag and felt any inclination to feel ‘pretty’. I took out my mascara and my favourite eye shadow and began. I then found my new dress – the one I had brought the only day I had shopped in all the time off I’d […]

Continue Reading

May 2012

Considering how much I fear May in last months post, it wasn’t as scary as I once thought. I have been symptom free from my Crohn’s all of May. I’ve taken no time off work for any problems related to my Crohn’s, excepted my already allotted days for hospital appointments. I visited Good Hope twice in May. The first on the 15th for my clinic appointment. Found out I need an iron infusion to help remedy my anemia and that I need a full colonoscopy this summer. Looking forward to that one..! My second visit was a week later on […]

Continue Reading

April 2012

I ended last months post looking scarily forward to April. It did not disappoint. This month only had two days when I was ill – April 27 and 28. A mini flare up on my days off from work (bloody typical) lots of gut ache, no probable cause to it and it settled down in a 36 hr period. PHEW. Started my counselling at the practice. Was, well is, challenging. Its very easy for me to talk but its not so easy for me to be brutely honest about everything. It is slightly frustrating, because it feels like a catch […]

Continue Reading

23

It is the final part of my 23rd year. I would say, on reflection, it has been a weird year. I started it in good fashion – drunk and in Norwich, my favourite watering hole. I was still enjoying my full time job. Things were good at home. I was enjoying being single. I got half way through my year and things changed, drastically and dramatically. I spent alot of my time contending with new challenges: Hospitals. Tests. Scans. Blood. Injections. Heartache. Depression. Lost friendships. Red hot anger and rage. Tomorrow shall be the first birthday I celebrate as a Crohnie. […]

Continue Reading