Problems again

So unfortunately things aren’t going that well and it seems like I’m in the middle of another flare-up. But let’s proceed with order.

The trip to Morocco went quite well. I tried to stay away from spicy food, and things that I wasn’t sure how my stomach would react to, but evidently I didn’t do enough. Looking back now, I don’t think there was any specific occasion I can link to this new flare-up, sure every now and then tI had the occasional dish with a little too much pepper in it, but when that was the case I’d eat very very little.Anyway, the first day I came back from Morocco I had diarrhoea. I thought to myself “wait and be pragmatic, it could be something dodgy you ate”, so I didn’t pay too much attention to it, although I did notice some mucus in it. The second day, same thing again with the addition that the other usual extra-intestinal symptoms of the colitis appeared: feeling really tired, that uncomfortable feeling in my lower back on the left side and at the back of my eyes, warm joints, and the feeling that my legs had become extremely heavy. So what, you might think? Well, no, these are the exact symptoms that I seem to get when the colitis is active. So, I thought, I wouldn’t want to take no chances, and I took the executive decision to bring my maintenance dose of mesalazine, 2g per day, to 4g per day, that on 6th November.

The diarrhoea disappeared straightaway (which makes me think that the mesalazine had absolutely NO effect on it, it must have been caused by something dodgy I ate) and the symptoms got very slowly better, to the point that after a week I thought I’d go back to 2g. But, it couldn’t be that simple anyway, could it? The symptoms came back again (this time no diarrhoea just extra-intestinal symptoms, as discussed above), and therefore I kept the same dose of medication.

Seen that things didn’t improve, two weeks into 4g mesalazine (23 November), I saw the consultant. He was OK with my decision to go to double the dose, he said that based on my symptoms there was definitely something, an inflammation ongoing but that it wasn’t that bad, and said to keep doing that for another 2 weeks, just to see how things went as the symptoms might clear. If not we’d see the best course of action.

So I did that, and now 2 weeks after the consultation I have to say that the symptoms are a little better but they haven’t gone.

It is frustrating yes, but, unfortunately there isn’t much I can do. Will now see what the consultant wants to do.

As a side note, I’m still taking the probiotics, eating turmeric every now and then, and about a month ago I’ve introduced dates in my diet. Whether all this helps, I have no idea.

End of summer break

So, in case you're wondering if I had survived the summer, yes I have! I missed my regular update unfortunately, but here we are now.

So let's start where we left off, in August. When I was on holiday I had a few problems. I was doing fine up until I ate a good bowl of berries, blackberries, mulberries and red currant. The same day, when I went to the lou I passed blood. I thought it was just the red juice from the berries, but the day after it became clear that it was blood as there was even more than the previous day even thought I had much less berries. The funny thing was that I was feeling fine, I didn't really have any of the usual symptoms, just the bleeding, and it was quite a bit: to put things into perspective, it was like cutting your arm and look at the blood dripping. Anyway it took 3 days for the bleeding to stop completely, and obviously when I came back I went straight to my GP but we're not too clear what had happened. He wasn't particularly keen to treat this as a flair up, more like an incident. The trouble is that, I can't be 100% sure that it was in fact the berries causing that, I would have to try eating them again and see what happens...but, needless to say, I'm not too keen to do that, so I think I'll avoid them for now.

Aside from that, things seem to be OK for the time being. I'm still taking my daily 2g of mesalazine and began to take some different probiotics, it's called probio7, sold in boots, here are a few screenshots.

I don't know how good it is, considering it doesn't need to be in the fridge and it's essentially capsules with powder inside. It'll do it for now, then I might take a different one.

I 'm also eating a bit of everything now, like chocolate biscuits, and other things that I wouldn't have eaten a few months ago. I tried a few glasses of wine as well, and it wasn't too bad I have to say, the day after I was fine except for a little bit of mucus in my stools, but that couldn't have been because of the cheese I had that day, so I will have to try again and drink some more wine, just to make sure that it's OK. I've also decided that, providing things don't get worse, I might reduce the blog updates to once a month, so the less I post, the better I am, which makes sense since this blog is about I bad I feel.

Got another holiday coming up soon, will see how my stomach reacts to Moroccan food...

Going back again?

So, since they last post things have gone a little worse.

I had diarrhoea three times in a week, and is seems that there is some mucus in it too, but nothing incredibly obvious. I don’t know whether this is due to something dodgy I ate, (it was surely the case at the beginning of August, but now we are in the second half) or it is the colitis coming back. The thing is, it isn’t just diarrhoea all the way, it starts normal and then towards the end of the bowel movement it goes softer and softer till turning into some mushy mixture or into diarrhoea.

Other symptoms seems to have got a little worse, in that I began to feel a bit more tired and sluggish than usual, plus that weird feeling in my legs – the usual one you know, that sort of tiredness and heaviness - and that happened at the same time as the diarrhoea, which is this week and the one before. At least in two occasions I noticed some foam in my stools too. My stomach also feels, er, different, I’d say uncomfortable at times. Food-wise, not much to say: I did feel a bit more adventurous with my diet, had a few chocolate biscuits, but I don't know whether this has had a negative impact or not, I can't really say. I’m trying to be optimistic, I’m sticking to my 2g of mesalazine still, as I don’t really want to go back to 4g as yet, surely not without talking to my GP. The problem is that I’m off on holiday as of tomorrow, which invariably means a change in diet anyway. All I could say is that I’ll try to be as good as I can, possibly avoiding alcohol altogether as I did for the wedding at the beginning of August, hoping that this diarrhoea goes away completely. I can only wait and see, really, nothing else I can do.

Last week I’ve also updated my bowel habits spreadsheet, adding the mucus-free days per month and the average number of bowel movements per month, and I have to say that was quite an interesting reading. I'm not really in the position to say that this data has medical significance, but I can say that when my colitis was at its peak, in april 2015, I have experienced the highest number of bowel movements, with the average being 2.53 compared to 1.35 in December 2014 (still no mesalazine) and 1.16 in July 2015 after one and a half month of 4g mesalazine. Let’s have a look at this mucus-free and bowel movement stats briefly here:

December 2014:
Average bowel movement: 1.35483871
Mucus-free days: 1

January 2015:
Average bowel movement: 1.35483871
Mucus-free days: 0

February:
Average bowel movement: 2.035714286
Mucus-free days: 0

March:
Average bowel movement: 2.225806452
Mucus-free days: 1

April:
Average bowel movement: 2.533333333
Mucus-free days: 3

May (first month of 4g mesalazine):
Average bowel movement: 1.419354839
Mucus-free days: 0

June (second month of 4g mesalazine):
Average bowel movement: 1.033333333
Mucus-free days: 16

July (third month of 4g mesalazine then down to 2g):
Average bowel movement: 1.161290323
Mucus-free days: 20

Here is a link to the updated spreadsheet.

Holding on

Right, this week I've received the results of the biopsy done the 9th of July and it basically say that there is “no evidence of active IBD”, which is great of course, but there are some changes in my colon I seem to understand. Here it is:

I'm a bit worried about this change, I don't know what that means, and as soon as I see my GP I'll ask, because this wasn't there when I had the colonoscopy.

In any case, this week has been, let's say, somewhat “different”. Of course I'm still taking 2g Mesalazine every day, but I had to change my diet quite a bit as I attended a wedding. Needless to say, mindful of the experience of other people I talked to, I have tried to be a good boy and restrained myself (I haven't drunk a drop of alcohol, and incidentally I haven't drunk since about January), but there was plenty of other delicious things I couldn't possibly resist, like cheese, parma ham, cream cake, sweets, red meat etc. And that's just the wedding day, in the space of about 3 days I've been eating plenty of cheese and meat. So, how did it go? Pretty well I think, I had a few episodes of mucus in my stools, but, all in all, much better than I could have possibly expected, I think it is still pretty good – except for the fact that I've picked up a nasty cold.

Now all this is important I think, because iy means that slowly I can start again enjoying things that I had to give up. Of course I shouldn't be inconsiderate, but I know that I can push a little, so happy days!

No news

OK, so last week I went to my GP because my consultant said I need some blood test to check whether it is still OK for me to keep taking mesalazine (I'm on the 18th day of 2g of Mesalazine) and I should have the blood test some time next week.

He said to continue to take it (2g) as indicated by the consultant until I see him again, in about 6 months time.

Things seem to be improving slightly compared to last week. I do feel generally better (although I picked up a very nasty sore throat), I don't recall being tired this week, didn't have that strange feeling at the back of my legs or eyes. My stools are largely OK too, even thought occasionally I can still see the mucus, especially after eating dairy products. Now, about this, I have to say that I eat small amount of parmesan on a regular basis, and that is OK, but when I top it up with extra cheese like mozzarella on the pizza or halloumi cheese, then rest assure that the day after I'll see some mucus. Luckily I haven't seen any blood.

Tomorrow it's my last day of VSL#3: I decided to stop because I have no idea whether it's doing anything positive or not: as said before, maybe it helps, but I have no definitive proof, and to be honest it's costing me quite a lot of money. I was thinking, as before, to replace that with yoghurt but since dairy stuff doesn't seem to agree with me I'm a bit worried.

There is only one thing that is bothering me: occasionally I feel a lightly uncomfortable feeling in my lower back, both sides and sometimes one: now, I doubt it's the colitis because I remember really well the feeling (dull pain on both sides) whereas this feels different, it's not dull, it occurs every now and then. I guess I will know more after the blood test, hopefully it's nothing.

I'm still staying away from really fatty food, cakes and biscuits, but I started to miss them. This weekend I'm going to a wedding, which means eating stuff that I probably haven't eaten for a long time: it will be a good test. I don't think I'll feel brave enough to drink any alcohol though, still too early for that.

Not much change

Today was my 9th day of reduced dose (2g) of mesalazine. Things seem a little better. I don't feel as bad as in my last post although I still have some mild symptoms (maybe it's just because I had a really busy weekend and no time to think about it, hard to say). The uncomfortable feeling at the back of my eyes seems to have subsided and my bones, muscles and joints feel better, but not as good as when I was on 4g a day. I also don't feel as tired, but the stools are still not great, in the sense that they are a little loose and there is some mucus here and there. I'll stick to my plan, see the GP on friday and then will take it from there.

I'm still on VSL#3 by the way, but I still don't know whether it has a good effect on the colitis or not.

Forgot to mention that I'll apparently have to have some blood test to check if kidneys and liver are OK due to the mesalazine therapy.

Setback

So, on Thursday 9th July I saw the gastroenterologist for a check up.

He was happy that I was feeling better and he said that it would be good to try to reduce the dosage of pentasa, from 4g a day to 2 and see what happens. He also performed a sigmoidoscopy (it was one of the most uncomfortable things ever I have to say, but hey) and he said that my colon looks better and that I will get the results in about a week time.

I told him I was taking VSL#3 and he had no objections to it, but when he asked me whether it was helping, I told him that I have absolutely no evidence of that.

So, today is my second day at half dose of mesalazine, and guess what? I've begun to feel bad again. My legs feel again warm and really tired and heavy, (very bad sign as this is exactly how I've been feeling during the flare-up) but most worryingly, the mucus is back (and quite a bit) . My stools are also a bit loose and very very sticky. So, it looks like my remission didn't last that long after all!

I've decided that tomorrow I'll book an appointment with the GP and I'll give this half dose a try anyway for about a week - which is probably the time it will take me to see my GP - and take it from there, rather than starting to take 4g again straightaway (just in case). It's funny how long it takes you to go into remission and how quickly you destroy all the progress you've made. Incredible.

Also, the consultant said (again) that I may need to consider enema - I know I mentioned this before - as this is the best way to deal with UC: so I'll mention this to the GP and see what he thinks. The consultant also said that it might be a good idea to check my liver and kidney functions as I've been taking the maximum dose of mesalazine for about 12 weeks.

So, back to square one then. Great.