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Mild but Stubborn Colitis, What’s Really Going On?

Intro:

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.

Symptoms:

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.

Sarah’s Story:

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

Medications:

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







13 Responses to Mild but Stubborn Colitis, What’s Really Going On?

  1. Adam
    Adam October 5, 2015 at 1:13 pm #

    Hi Sarah,

    Thank you again for sharing, and I think you have some excellent questions.

    You are correct in that all of us have varying degrees of the symptoms, and although your symptoms might seem mild compared to others, they still effect your life, and so there’s still room for improvement.

    I think it is great that you have tried many treatment ideas so far. For sure you’ve also learned alot on the way, which is also great.

    I myself had a bad experience with Asacol, it is hard for anyone to say if certain medications make your symptoms worse or not, but definitely after my diagnosis, the Asacol did not get me into remission, nor did the other 5-ASA meds I tried. Maybe bringing up with your doctor your current results, and a request to investigate other medications is one option. Alternatively, you might find some benefits with a few different allergy tests to see if there are foods which are possibly difficult for your body to handle (or other things). There have been several folks here who have benefited greatly from simple allergy testing.

    I hope some others have some ideas or thoughts for you. Best of luck in the coming months and years!! and good luck back at the job!
    -Adam

  2. noelgallagirl October 5, 2015 at 1:54 pm #

    Hi Sarah,

    First, no one is ever ‘lucky’ after being diagnosed with UC, or any other so called bowel ‘disease” (I hate the word DISEASE). It matters not whether your symptoms are mild or severe, having this trouble is quite simply, not good.

    Second, yes, the meds CAN make everything worse, and often will and does.

    I was on Asacol for 15 years (!) and it did nothing except make the symptoms of UC worse. So bad, in fact, that I finally put two and two together, and got off all meds completely. I wonder sometimes, if it is almost overkill to even treat this condition with meds.

    I now take my trusty ULTIMATE FLORA CRITICAL CARE probiotic daily, upon waking, at least a half hour before any food or drink other than water, and L-glutamine. Again, daily, about an hour before lunch. I have been in remission for almost 7 years, although it took some months, even up to a year for any blood to completely disappear. I can and do eat whatever I want.

    I never drink alcohol, never take pain relievers other than tylenol (these things for GI tract bleeding), and don’t get immunizations any more (because, for me at least, the flu shot seemed to trigger flares…haven’t had the flu shot for years, haven’t had that flare every Fall / Winter)

    What you are doing regarding your diet is probably good. Possibly just ‘babying’ your colon that way for awhile until it ‘heals’ could be of benefit. It takes time for healing. Just remember that. You can treat this without meds, no matter what the doctors tell you. Remember, you are the boss of your body…nobody else.

    Cheers:)

  3. tammy shippy October 5, 2015 at 6:15 pm #

    Actually, your symptoms/story is similar to mine. I was diagnosed in 2011. I had bloody stools for 2 years before I ever had a “traditional flare.” I’ve had 3 “traditional flares” which consist of MANY (as many as 25 times daily) trips to the toilet with bloody diarrhea. I have no pain. I have been SCD/Paleo since April 2014 and my symptoms have been well controlled. My colonoscopy in June showed a lot of improvement, so my doc reduced my Apriso to only 4 daily and 1 Canasa suppository daily. It is my belief that without your dietary changes, your disease could be much worse. At least this is what I tell myself. I also take my probiotics religiously. Best of luck to you. I think you are on a good path.

  4. Rhonda Dearlove October 6, 2015 at 12:15 am #

    Hi Sarah,

    Thanks for sharing your story. How frustrating this must be for you especially as you are such an active person. All I can say to you is when my meds were changed to Asacol within 1 day my symptoms became markedly worse. multiple attacks of charging to the loo and blood and mucos, I immediately phone the gastric nurse and she said stop the Asacol immediately and go back to pentasa 4mg daily. She said there must be something in it that I am allergic too. I did loads of research and started taking probiotics( capsules) I think 3 billion, L glutamine, Alcoa Vera, and turmeric and after a couple of weeks I feel normal again. In fact I haven’t been better in the 28 years of having UC. I am even going to enquire to see if I can start reducing the pentasa.

    Every one is different, but I hope this helps.

    Regards

    Rhonda

  5. Sarah J October 6, 2015 at 7:59 am #

    Thanks so much for reading my story and for your replies. It’s a real boost to connect with people who understand!

    I’m due to see my gastro at the end of October and I intend to raise the issue of Asacol and whether these mesalazine drugs are doing more harm than good. I am also going to get back on the L Glutamine when I’ve stopped breastfeeding. Possibly try aloe vera too. And, Tammy, yes, I too have considered that my disciplined eating habits might be helping me stay at the milder end of the scale. I’ve had blood/antibody testing – which is what showed up the sensitivity to bananas (was eating loads on SCD before I found this out!!), blueberries, grains – but cutting these things out doesn’t seem to have made a difference. Is there a consensus as to what is the most reliable form of allergy testing?

    Thanks again for taking the time to share your thoughts.

    Sarah

  6. Jeff October 6, 2015 at 8:13 am #

    I would get back on the L Glutamine as soon as I could.

    • Sarah J October 6, 2015 at 8:25 am #

      Oops. Just seen how to reply directly. Will do that in future.

  7. Sarah J October 6, 2015 at 8:24 am #

    Thanks Jeff,

    I’m planning to – just as soon as my little girl turns one, which is in 3 weeks, so not long.

    Sarah

  8. Graham from England
    Graham October 6, 2015 at 10:57 pm #

    Hi Sarah,

    Looks like you hve tried quite a few things now. You can try extra virgin olive oil, it has been amazing and not just for me. It is super healthy, anti inflammatory and definitely won’t make you fat! There is a great oil in the UK which I have had tested. From M&S, Italian “fruity with a peppery finish”. 1 tablespoon before breakfast, lunch and lastly before bed. Give it two weeks minimum and best of luck!

    • Sarah J October 6, 2015 at 11:53 pm #

      Thanks, Graham.

      I have tried quite a few things. I think the probiotic thing maybe doesn’t work for me because, when I had my gut bacteria tested, it was absolutely fine. In fact, the nutritionist was surprised by how healthy it was considering my issues. So that has always perplexed me. I still take a probiotic though, just because it seems like a good idea! Will look into that olive oil at my local M&S! Good to know that I should wait 2 weeks for any results.

      I also meant to say to Noelgallagirl – I hate the word ‘disease’ too; I always refer to it as a ‘condition’ because I can’t bring myself to say it!

      Sarah

  9. Graham from England
    Graham October 7, 2015 at 12:06 am #

    Unfortunately probiotics never helped me either. The oil is usually noticeably working within a few days. Here is my EVOO link http://www.ihaveuc.com/evoo-2/

  10. Jesse October 19, 2015 at 2:27 pm #

    I would stop taking the asacol it made me feel awful. There is a small percentage of people that asacol makes the symptoms worse. I to am in the same boat. Never a horrible flare but it’s always there and I never feel 100%. I do have bleeding though off and on. If you find something that helps please share. I’m always looking for something that will help.

  11. Fred S
    Fred November 4, 2015 at 8:11 am #

    I have been battling UC for more than 2 years. At one point, it was 18+ trips a day to the bathroom and so much blood loss, that I could barely walk. After a lot of trial and error, things are going really well now.

    SCD has really helped, along with Sulfasalazine 2x a day. The medication doesn’t do it alone though. The key is to eat protein and vegetables but avoid too much carbohydrates. Most food these days have a ton of added sugar, which is not good and we are really aren’t meant to eat a lot of grains, despite what nutritionists and doctors say.

    If you haven’t already done so, try homemade yogurt. It’s one of the best foods for the digestive system. Start out slowly eating a small amount each day then work up to a normal serving to allow the body to adjust.

    Hope that helps.

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