Latest hospital appointment

Today I had another check up with my gastro nurse Deborah. It has been a month since my last appointment and a few things have happened since then. I've had a couple of bad spells with picking up illnesses and one morning spent being sick for 6 hours after a chilli (damn tomatoes!) but overall I'm feeling okay. The main problems for me have been the side effects with my steroids which is why I'm relieved that the nurse has agreed I can begin to reduce them again. In the next 3 weeks I should be off them completely and I hope this means I can say bye bye to the moon face, even Deborah said i look 'steroidal!'

It all sounds great but I could see they didn't have much confidence in my ability to be just on the azathioprine so I have been given some information on Humira so I'm prepared in case that is my next option. Humira is an injection i would take every 2 weeks and is also an immunosuppressant and would be taken alongside my azathioprine. The thought of injecting myself with something isn't pleasant but neither is surgery which is the step after that. Today was the first time that surgery actually seemed like a possible option which was scary and has really hit home.

On the advice of my nurse I'm really going to re think my diet (the fact I've put on more weight is also a factor!) I always feel hungry but now I need to look at what I'm eating and change it. I am on a low fibre diet but for me the problem is how much carbohydrate I eat so my focus now is more protein like oily fish and chicken. Fingers crossed this will help me feel better and loose some of the weight I've gained!

Hurdles

Today has been very exhausting, the morning was spent in the hospital at my appointment to see Dr Kahn my gastroenterologist and the rest of the day was spent shopping, spending time with my cousin and packing for cologne. To make things easier I will split these up into separate posts!

The meeting with Dr Kahn was overall quite positive, he started by asking if there was anything I was confused about and I told him I still wasn't completely clear about where my crohns was. He explained that the large and the small bowel are the most commonly affected, the small bowel is named that because it is very thin. This is the part that confused me as it is much longer than the large bowel! He told me my inflammation is all the way round the large bowel and then a small part into the small bowel - normal for someone with crohns. This was reassuring and didn't feel patronising at all which is what I like about him! He also said that despite the shingles, which caused a break in my taking of azathioprine, my blood tests were showing an improvement on inflammation! This means the steroids were still working (I love the way doctors say steroids, like stiroids). However he has upped the dosage again to 4 tablets a day for the next two weeks. Ideally I would like to come off steroids soon but hopefully this big hit of them will mean that I can.

He also explained about surgery in the future and that he would do everything he could to prevent me from having it and explained the next options if the steroids don't work. These come in the form of injections which I have heard some negative things about from other crohns patients so I'm hoping I can stay away from those! The next hurdle is going back to university and fitting in appointments at home with my work. I already face this in the next two weeks where I start university but have a hospital appointment an hour and a half away the next day! These are things to work out as I go along but I hope that it will settle down eventually.

Contraception

I ummed and ahhed a little bit before writing this post as I wasn't sure how much information is TOO much information when it comes to Crohns and how it affects the rest of my life. I also wouldn't want to embarrass anyone (parents, siblings, *cough* anyone else that is affected by my choice of contraception *cough*) but after doing a little bit of research I think its important.

As Crohns is commonly diagnosed from the ages 15-35 it is a time when women are sexually active and most girls I know have used some form of contraception before that isn't a condom. I have been on the same pill since just before I was 16, it was called microgynon now its changed to rigevidon and I have never had a single problem with it. I'm good with pills, its not often I forget to take it and there have been no side effects at all. I take my packets back to back as I HATE periods, they are a waste of time on the pill and I've read a lot about it being beneficial to keep taking them as it means your hormone levels don't peak and dip as much. It did cross my mind that the pill might not be as effective especially when I was being sick after every meal as surely it wasn't being absorbed but now that i'm not being sick its just the toilet stuff to worry about. If the pill isn't given enough time to absorb it will just go straight through and be less/ineffective. My nurse mentioned this to me at my last appointment and tonight I thought I would look it up.

A few things shocked me when doing some research, the first being a lot of people on the Crohns forums didn't know that the pill is less effective if your using the toilet more. I was made aware of that way before Crohns came into my life which is why it surprised and also worried me. Should there not be a lot more babies wondering around because of that?! The second thing was the research that the contraceptive pill can make you 3 times more likely to develop Crohns if you have been on it for 5 years or more. This was the part that caught my attention as when I first started to get symptoms it was 3 1/2 years since I had started the pill.

'ORAL contraceptives have been associated with the risk of developing Crohn’s disease (CD), while a link between the pill and ulcerative colitis (UC) is confined to people with a history of smoking, according to a US study.

In a prospective cohort study of 232,452 women, 315 cases of CD and 392 cases of UC were recorded. 

Compared to women who never used the pill, current users had nearly a three-fold increased risk, and past users had a 39% increased risk, of CD. A higher but not statistically significant risk of developing UC was also recorded.'

This is a quote from http://www.medicalobserver.com.au/news/oral-contraceptive-pill-linked-to-increased-risk-of-crohns-disease.
Another website I also found interesting was  http://health.usnews.com/health-news/news/articles/2012/05/21/birth-control-pills-hrt-tied-to-digestive-ills

This has really made me consider whether it is time to come off the pill now and find a different form of contraception. Clearly its too late to stop me developing Crohns (if the evidence is right and there is a link) but could it play a part in reducing my symptoms? Its a shame that I found one that worked well for me pre-Crohns but now its another thing that I will have to adjust. I'm hoping that the next option maybe be the injection and that the hormonal side effects of that outweigh the ineffectiveness of the pill!

How do you manage contraception? Had anyone else ever heard of this study?!

MRI Scan...

Today was my last hospital appointment until after Christmas and I spent it in the radiology department having an MRI Scan. I wasnt that nervous about this one as I thought it would just be laying down in a tunnel for a little while.  The only part that scared me was the unknown injection of dye that I knew I would be getting. When it comes to injections I am fine getting a cannula, they hurt a little but I can get over that and I'm happy knowing I dont have to keep having needles, but for this i wasn't sure if a cannula was an option.  For anyone who is having an MRI and is hoping I will say something good about it like 'it was fine!' stop reading now! I would hate to put fear into someone like I have had done on some Crohns blogs but honestly, I thought the whole thing was awful. 
It started with a half 8 appointment which I couldn't eat or drink anything for 6 hours before, that part was fine as I wasn't hungry anyway. When we arrived the nurses were lovely, I was allowed to keep all my clothes on as they didn't have any metal or zips (so wear leggings if you can instead of jeans and try to wear a jumper). Then it got unpleasant. I was given a big jug of liquid to drink which was a warm thick consistency and was told to drink it In 45 mins. The first cup was fine but after that it became undrinkable and I found myself heaving back into cup. I only managed half and although the nurses were unsure that it was enough the MRI went ahead fine anyway. I was taken into a room where they went through a list of questions which could prevent me from going any further like have you had heart surgery etc. I answered no to all except one which was about intimate piercings. I have my belly done and I did have a ring in my ear which were fine to take out, however I also have had my nipple pierced since march and still can't get it out. It is very much stuck. They warned me about the chances of it heating up and even said they had a belly bar burn someone before but I didn't really have a choice but to go in anyway. 
The machine is smaller than I thought but still very intimating and not comfy to lay on. They did some test scans first to see where the liquid was but saw it wasn't down enough so I had to go to the toilet and walk around for abit. When I went back the test began. Although they give you headphones the noise is extremely loud and pulsing and very scary when you are in a small space. The space really is tiny, the roof of the scanner is right infront of your eyes. All I could think about was the injection and the piercing which made me upset and the whole process a lot worse. After a few tests they took me out and inserted a cannula (massive relief!) which calmed me down, I could also lay on my front which meant I couldn't see the ceiling. I was given some dye injections and a muscle relaxant and told it might make my eyes bit funny after which sure enough it did, I couldn't see infront of me! After the cannula was removed I was allowed to leave but it has been a bad day and I've felt unwell for most of it. I hope this hasn't scare anyone and looking back I could have had worse things done but if I had to choose I would have a colonoscopy any day!