British documentary producer/director, living in London. Mostly make factual TV, e.g. science and history. Mother to an awesome little girl who is, amazingly, nearly one.
Some more background:
Like to rock climb, horse-ride and run when I’m feeling up to it. Also love movies and good wine. Obsessive researcher of everything – which is great for my job but not so much my life and peace-of-mind! In particular, I am trying to limit the amount of time I spend with Dr Google.
Erratic bowel habits. For example, yesterday two formed stools and today lots of gas and many trips to the loo to pass tiny amounts of soft stool.
So… I have wanted to post on here for ages now but, with a baby, it’s difficult to find the time. Out of the blue I was diagnosed with indeterminate colitis or Crohn’s-colitis in October 2013, after a colonoscopy. I was shocked, and so were my doctors, because we’d all been convinced I was simply suffering with post-infective IBS. 5 months before I had become unwell with diarrhea after eating oysters – as had a few other people in the French village I was visiting – and, although the acute diarrhea had passed, the symptoms were dragging on. They were mainly occasional diarrhea and very rarely a small amount of mucous. I was managing to control the symptoms well by following the low-FODMAP diet, another reason the doctors thought it must be IBS. After the colonoscopy I was prescribed 2G Pentasa daily, which was increased to 4G when I returned to speak with the consultant. They had found colitis in 70% of my bowel, basically it was affecting the middle part – not the rectum or sigmoid and not the other end, where it meets the small bowel. It was this distribution pattern that led to the ‘indeterminate’ label as not characteristic of ulcerative colitis. They found one ulcer too. So, although my symptoms were mild compared to so many stories I’ve read, I was devastated and incredibly anxious about the future. I have always been fit and active and I have a pretty stressful and demanding job; I’m a documentary producer/director. I found that it really changed the way I see myself and my entire identity. What me – an ‘ill’ person?! Coupled with the embarrassing nature of the condition – would my fiancé still want to marry me (he did)? Would the diarrhea get worse and worse? Would I end up with a colostomy bag?? I’m sure everyone who receives a diagnosis of IBD goes through the same thoughts.
So, I followed the SCD for about 6 months. I fell pregnant that December (2014) and towards the end of my pregnancy switched to paleo because I felt I needed more food! I have been paleo ever since. My symptoms have remained mild but never gone away. I have had a solid poo maybe twice since I was diagnosed. I have never had bleeding or pain. A bad day means going to the loo four to seven times but no urgency or copious diarrhea, just soft pieces of stool. Most days I go two to three times. I switched to Asacol last week and I think it’s making me worse – more gas and more trips to the loo for tiny pieces of stool that are hardly worth the bother. I have tried Ultimate Flora Critical Care and a liquid probiotic called Symprove that has been tested for UC in London and found to be helpful. Nothing has changed my up-and-down symptoms. Even pregnancy and a traumatic birth made no difference.
Whilst I am really grateful not to have experienced extreme symptoms I just find my situation difficult to understand. I have two friends diagnosed with UC and they have dramatic flares, take steroids, get back on track and experience no symptoms. I find this constant drip of mild symptoms wearing because – whilst I have never had an actual ‘flare’ in the classic sense – I never feel normal. The doctors always say I am in remission but experiencing functional symptoms – or IBS – as well. My blood tests are always normal.
I am unsure as to how to move forward.
My daughter is nearly one and I should be returning to work soon but I really wanted to be feeling better before I went back. My husband is convinced I got worse after I had the colonoscopy and started taking Pentasa – he thinks I was doing better on the low-FODMAPS diet. Part of me wonders whether I might have been experiencing the aftermath of a horrible intestinal infection when I had the colonoscopy and whether the colitis they saw was a result of this whereas now what I am experiencing is IBS. However, I am cautious about being in denial about the condition. I am wondering whether the drugs are causing more problems than they are solving (I am on max dose of Asacol as I was Pentasa) and whether I should try and reduce them and see what happens… but then I don’t want to make myself sicker if they are the reason my symptoms remain mild. Sometimes I wonder whether I should ask for a short course of Budesonide, to see if it makes any difference. I am also on the point of giving up on paleo, since I would hope for better results in nearly two years of eating this way.
I would really like to know if anyone else experiences IBD as I have described… no blood, pain, just bowels that change on a daily basis, never copious or acute diarrhea, just soft stools, sometimes formed, sometimes fragmented throughout the day. Oh, and a bit of gas, especially (I think) after switching to Asacol. I would love to hear your thoughts and advice.
Finally, I am conscious as I write this that many people here have experienced much, much worse and probably feel I should think myself lucky I haven’t (yet) experienced an extreme case of IBD. I do think myself lucky and my heart goes out to everyone that is in a much more difficult situation. Sorry for such a long, long post and thanks for taking the time to read.
Medication – Asacol – 6 x 800mg tablets per day
Supplements – Fish oil, turmeric, EPO, zinc, vitamin D, multi-vit
Just finished – Symprove. Completed 12 week course and has made no difference.
Diet – paleo
Probiotics – no difference
SCD – no difference, except a bit more constipated
Magnesium, L Glutamine (might have been helpful but had to stop due to pregnancy and then breastfeeding
Paid lots of money to see a functional doctor here in UK. Blood tests revealed sensitivity to bananas, blueberries, grains. Cut them all out for months. Made no difference.
He also gave me various hormones to take. I took for couple of months but wasn’t happy taking them while pregnant.
written by Sarah J
submitted in the colitis venting area