Tuesday, 19 May 2015

World IBD Day: Reflecting on Me and My Belly

Today is World IBD Day 2015. This is the first time this has come around since I started my blog, and last month was also the anniversary of my first diagnosis, so I would like to use this as an opportunity to reflect.

A lot has changed since that day in April eight years ago, when a urinary tract infection caused my first ever major flare up, and led to my diagnosis with Ulcerative Colitis (UC). Six and a half years later, I also found out that I had developed fructose malabsorption (FM). It hasn't been easy to deal with, but starting this blog has helped me learn more about my conditions, and about both IBD and IBS in general. It has also helped me understand my belly, and slowly accept that it is part of me.

There have been many parts to this process. Firstly, I have come to accept that since the diagnoses, my life has changed significantly, and will continue to change. With the help of the research I have been doing for my blog, I am starting to understand that UC in particular is a chronic disease, and that means that this body is what I have to live with. While I am still determined to contribute as much as possible to the fight for a cure, I also know that I need to be realistic about how I need to live my life. I need to do what is necessary to feel better – even though this may take extra time and effort, and cost more money. I have had to accept that taking prescription medication every day, going to regular doctor appointments (such as the dreaded colonoscopies!), and being careful of what I eat, have become part of my new routine. And although all of this can be frustrating, it is worth it to avoid the alternative – pain and discomfort. On the other hand, this has also given me the opportunity to cook interesting things for myself, and generally have a healthier diet.

Another thing I have come to realise is that these conditions did not just suddenly develop. I think that I have had UC and FM for most of my life, but had not realised what the symptoms represented previously. Now that I have a better understanding of the full range of possible symptoms, as well as the potential associated health problems, I am becoming more convinced that I have had belly problems since I was a young child. I have memories of stomach aches after meals, and severe reflux episodes that would last for several hours, or even a few days. I have also always had problems with mouth ulcers, which seem to be linked to IBD, and I was born with dermatitis, which I believe can also be common in people with bowel conditions. I have also found out that auto-immune diseases in some form seem to run in my family, on both sides, and that they seem to have developed in severity through the generations. This has also helped me accept that there was nothing I could have done differently to prevent developing UC and FM, and that it was not my fault.

I am also learning to accept that my body will likely never be completely healthy, and therefore my symptoms may be unpredictable and difficult to manage. I know that I may also be prone to other health problems, and have to be extra careful. Most of the time I have quite good days, and I can go to work or spend time with loved ones without any problems at all. However, I have bad days, and even very bad days. There are days when I feel bloated and have painful cramps and/or on and off all day, or for several days in a row, and the only way to treat it is to give my belly time to recover, which often involves several trips to the toilet. The worst days are when I have to force myself to get out of bed in the morning after only having a few hours’ sleep, because I have had a bad stomach ache during the night. If this happens a few nights in a row, I will then inevitably catch a cold or something similar, which of course makes me feel worse. Sometimes, all I can do is lie down in bed with a heat pack on my belly, and try to rest.

In retrospect, these experiences have made me realise that I am stronger than I originally expected. Even if a flare slows me down for a while, I take pride and comfort in the fact that I have always been able to get through it. My favourite quote is, “That which does not kill us, makes us stronger,” by Friedrich Nietzsche, and I find that this helps motivate me during the bad days. I am learning to understand my belly and how it responds to certain things, and I am getting more used to feeling when a flare is coming on, so I can brace myself when it hits. I can feel when things are moving in my belly, and I am starting to work out what the different feelings mean. Although the gurgles and hiccups sometimes alarm those around me, I am also learning to hear and feel what they mean – almost like how a mother can hear the differences in her child’s cries (if that makes any sense!). And because I am learning to understand my body and how to manage my symptoms, I am becoming even more determined not to let these conditions define me, or ruin my life.

I believe that this inner strength has helped me overcome other frustrations. I am starting to appreciate that although they may try, no one else can really understand what I am going through, and that is okay. Some people might make jokes or comments that are inappropriate and can be irritating, but I know that it just shows their ignorance. This is the result of a lack of awareness of IBD and IBS in society, and starting my blog is one way that I am helping to rectify that. My family, partner and friends do their best to help me with managing my diet and my symptoms, but they can still forget which are my worst trigger foods, and I often have to remind them. I now understand that it is not worth getting upset about this - sometimes I even have trouble remembering the whole list, so it is unfair to expect it of them. First and foremost, it is my responsibility to take care of myself and my belly, and any help and support from others is a bonus. It is also my responsibility if I have a weak moment with food. However, I also understand that if something does go wrong, this can have an impact on others too, and potentially ruin their plans, so I need to avoid this when possible.

Finally, I am also becoming more and more aware of the fact that I am actually luckier than most with my situation. Yes, I have two bowel conditions and that sucks, but both are relatively mild and under control. With the help of my medication, my UC has been in remission for several years – in fact, I have not had severe bleeding since that first major flare up prior to my diagnosis. Also, although FM is probably the most difficult food intolerance to manage, it is getting easier to work out my diet, and keep my belly settled. The stories I have read about other bloggers, celebrities, and other people in Facebook groups, have definitely put things into perspective for me. I am constantly reminding myself that it could be much, much worse. I also know that I am still quite young, and that the general pattern with these conditions is for the symptoms to worsen over time. While I hope that it will never be necessary, I know that there is a chance I may need surgery one day, so I will do what I can to prepare myself for this possibility.

To finish, I would like to give some advice to anyone reading this and reflecting on their own situation: learn everything you can, and listen to your belly. I feel that this is the best way to really understand and accept what is happening to your body, so you can get on with your life!

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