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.

Are we getting there?

I've been a bit late in posting this unfortunately, as I had very little time.

So I'm almost at my 10th week of mesalazine 4g a day. This week I've seen mucus only once in my stools, so I felt quite adventurous and ate half a slice of cream and chocolate cake. Result: no mucus and no blood the day after (today), so I'm assuming there won't be any even tomorrow.. However this week I've noticed that some of the extra intestinal symptoms are coming back, like mouth ulcers, and that's not a good sign I don't think. Also - and that has happens once only - my joints begun to hurt: I just hope this doesn't mean it's flaring up again. I occasionally still feel tired, although it seems more frequent the day after the gym (I know somebody might think that it's normal, and it is, but it's not the kind of tiredness you usually feel after the gym, it's that strange feeling in my legs and sometimes in arms as well) so no much change in that respect. My stools are still greasy though, so no change there either.

I'm on my 8th day of VSL#3 by the way, and even if I know it is still too early to say, I don't think I've seen any sign of improvements due to the probiotics. I occasionally feel bloated though, that's all I can say, and it almost feel that my GERD doesn't like those priobiotics. I'll keep taking though, and I'll probably order another few boxes.

This week I have to prepare a sheet with all the changes in the last two months as I'm seeing the consultant next week: I really need to clarify with him whether I'm on remission or not, as I'm not capable of determining this on my own and what will be the future strategy to follow (should I come off mesalazine or not?)

That's it for this week, sorry only a brief update. And I don't feel I'm really getting anywhere.

New hopes

So this week is my 8th week of mesalazine, 4g a day and it seems like it is getting a little better. For three days this week I've seen no visible mucus in my stools and no blood. I kind of feel like it's time to summarize what I have been doing so far that seemed it has helped (it may be that it's not the conbination of those though, who knows!):

• tons of mesalazine;
• reduced fibers in my diet (less fruit and fiber-containing products);
• take fish oil capsules;

As far as diet is concerned I have removed the below from my diet:

• raw vegetables;
• all nuts;
• chocolate;
• coffee;

I have no idea if this is a good diet, but I don't think I will reintroduce any of the above unless my symptoms completely disappear.

As for the extra gastrointestinal symptoms, no significant change: every now and then - like this morning - I feel tired, lethargic and that kind of strange feeling in my legs of course, but these days it doesn't last that long.

The VSL#3 probiotic has arrived by the way, and today is my second day, (only one bag a day though, as the thing is really darn expensive!) So far, no bloating which is apparently pretty common.

My stools are still really greasy, and that's every single day, with no exception and they look pretty sticky too, which makes me think that I haven't yet achieve remission.

Another week

Not many significant changes to report for the past week. The mucus-blood-pus combination has been on and off - more on than off I'm afraid - and it seems to me that even red meat might not agree that much with my intestine (I had a rib eye steak on Friday and Saturday I noticed some visible yellowish mucus in my stools). But today, for the second time in this week I had no visible mucus or blood in my stools, yay! Let's see how long that lasts.

The small, hard, pea-size swollen gland just below the jaw line is shrinking, but I have no idea what it is.

The extra intestinal symptoms are pretty much the same as last week, in the sense that they are still noticeable every now and then - I wouldn't say improving that much as every now and then I still have that funny tingling tired feeling in my legs. Interestingly enough, I noticed that my legs tend to feel strange after a bowel movement. No idea what that means.

On Friday I went to my GP as I was running out of Pentasa and I told him what has happened in the last month with regards to symptoms. He said that he doesn't believe I need enemas (phew!) but he prescribed me another 120 sachets of Pentasa, here they are, ready to be opened:

In fairness I only need 60 sachets till I see the consultant in early July, but it's better to have a spare box for the future, as it looks like I'll be on mesalazine for a very long time.

I also asked him about this VSL#3 probiotic, and I told him what I found about it. He said that yes, there is some limited evidence that it could do something good, but you never know with these thing. Eventually he said that it might be worth trying. Unfortunately I couldn't get it on the NHS, because, my GP said, probiotics aren't medications as such. That said, I'm sure I read somewhere that a few people managed to get a prescription for it: obviously now I can't find where, sorry.

So, I ordered it from here http://www.vsl3.co.uk/, two boxes of 10 sachets each for a total of £38 (yes I know it's a lot of money but I really want to give this a go and I will probably buy another 2 boxes in a few weeks time.) They should arrive in the next few days and we'll see what happens.

That's it for this week.

Strange developments

I have begun to feel a little better this week, but it's a funny business. My legs are feeling better, I don't feel that tired and lethargic, but quite the opposite in fact, the itchiness is much better (I'm glad I didn't stop taking the medication), and even the swollen gland just under the jaw line seems less swollen. This for the extra-intestinal symptoms. But as far as my guts are concerned, I could still see mucus and blood, every now and then, but not in great quantities. All good till Wednesday (3/06) when I noticed again big blobs of mucus, blood and pus, the usual thing again. It seems it all came back again, so, very frustrated, I thought hard what could have caused that, like new food I have tried this week and so on, but I can't think of anything too strange: roasted potatoes;

• a bit of fruit (I used to be a fruit-obsessed person, eating an awful lot of it every day, but since my diagnosis I've cut down on fruit significantly);
• I had some oat milk, everyday for a bout 4 days, as I was fed up with rice milk, but maybe I should switch back to rice milk instead;
• I had some multigrain flat breads, and that could be another thing that my guts didn't appreciated, who knows

I'm also trying to compile a list of food that I think it doesn't do me any good, but it is an incredibly complicated task. So far I have only a few things on it, which seem to be giving problems:

• Kale (and probably cabbage in general)
• Spinach
• Mushrooms

Then there're the usual irritant, coffee, chocolate, tea cream, fatty meat, alcohol: with these I didn't even try their effect on my guts as I cut them out completely assuming they're bad: a bit drastic? Maybe, but hey, better safe than sound.

So, to sum it up, this week is the opposite of the previous one: intestinal symptoms are back, extra-intestinal, are much better. I'm not sure what it means, and whether it's a good thing or a bad one. I'll have to ask my GP.

In general, eating out is becoming harder and harder as you invariably end up trying things that you think you'd rather avoid. Not only that, even at home, the range of the food I can cook is shrinking, and that's not the most annoying thing, surely not as much as not knowing whether what I'm doing is good or not. Incidentally, my supply of Pentasa is finishing, I think I have another week or so to go, then, hopefully my GP will know what to do.

Going backwards

In the last week, things have gone bad again. Curiously, I've been feeling crap most of the days: it's kind of OKish in the morning but as the day goes along if feel progressively worse: really tired, headache, my glands feel somewhat uncomfortable and the blood and mucus in my stools are coming back. I even skipped the gym, which doesn't happen that often, as I just felt I wouldn't be able to do anything. Some days you feel worse than others though: some days you feel particularly ill, others a little better, but still bad. The mesalazine seemed to have been doing OK for gastrointestinal symptoms but not much for the extra-intestinal ones, so much so that I have the feeling they're getting worse. It is kind of difficult to be able to discern between medication side effects and the symptoms of the illness sometimes as you don't know what is causing what: like, what is it that's making me feel ill? Is the colitis, or the mesalazine? No idea.

Anyway, this week I tried some greek yoghurt: apparently dairy products could be problematic for the colitis and on the top of that I have gastro oesophageal reflux and dairy products don't really help but still, I wanted to give it a go, as at the end of the day it's all trial and error. This yoghurt, Total has L. Bulgaricus, S. Thermophilus, L. Acidophilus, Bifidus, L. Casei and I read somewhere that probiotics seem to be doing something good to your guts if you have colitis. You could argue that the amount of bacteria contained in the yoghurt though, aren't enough, and who knows if they'll make it all the way to the intestine alive: I know, in fact I may need something a bit stronger than that: I noticed a few people talk about this probiotic called VSL#3, but it isn't quite clear whether it is available in the UK with or without prescription. Also, there are apparently some side effects to go with it too, because it allegedly has an awful lot of bacteria in it and not everybody can well tolerate that many bacteria. Ah, about the greek yoghurt, I ditched it after the first day. Not sure why, maybe I got scared as the mucus and blood appeared again in my stools: I don't think it's the yoghurt's fault though: I ate out a few days ago and the day after I notice a little mucus, so it may be that. Then a few days later I had salmon with potatoes and a lot of kale, and it looks like kale is something I shouldn't have anymore as the same evening I noticed quite a bit of mucus in my stools and unfortunately some blood.. quite a bit unfortunately. What I don't understand though, is the fact that I'm still on a 4g a day of mesalazine...so how's that possible that I get again mucus and blood?

In a bout two weeks I'm seeing my GP, so I'll mention it to him, and I'll ask him if it is a good idea to take probiotics too. Also, last time I saw my consultant, a few weeks ago, he had suggested that, if the slow release sachet of mesalazine I'm taking now don't do much, I should swap to enemas. And, needless to say, I'm not looking forward to that, but I'll ask my GP that too, and see what he recommends. Can't remember if I mentioned or not, but I will be seeing my consultant again in a bout 2 months.

Finally, I started again with the fish oil, high strength, 1000mg a day, 270mg EPA, 180mg DHA: why, some of you might ask? Well, again, I read somewhere that fish oil might help with controlling the inflammation a little, very little in fact you can read a bit about it here. I've been pretty bad with referencing any claim, I know, I promise from now on I will try to make a note of the things I read and reference them accordingly.

The fight goes on

As the days pass by and the box of pentasa slowly gets empty, I have the feeling that whatever I do to get better doesn't work as well as I'd like it to. The consultant suggested that if the mesalazine doesn't work as well as we hope, it will change my medication, but it looks like I have to be patient for a little longer. I booked an appointment for mid July with him, and till then it's still a lot of mesalazine.

My recovery is full of setbacks. In the last few days I've been feeling slightly better, or so I thought at least. I've seen less mucus and no blood in my stool, which is great of course but that feeling of malaise keeps coming back: my legs, my arms often feel weak, tired almost as if I was just about to get the flu. My joints feel funny sometimes too, but it is difficult to describe: they're warmer than usual, almost tingling. And the darn itchiness comes and goes too. I really don't know if it is directly related to the mesalazine, but I can say that - perhaps I'm talking rubbish - it almost feels like the medication is making me more susceptible to food intolerance, if there is such a thing, I don't know. I still see no rushes, which I guess it's a good thing. The gland is still swollen by the way.

Going back to my guts, I noticed also that I don't go to the loo that often, again, I don't know if it's the medication or the fact that I'm eating less fruit and fibres in general. I suppose that if I don't go to the loo that often it's better for my colon, in the sense that it won't work too hard...am I wrong to say that?

Anyways, let's see how it goes and if there is any news I'll post back.

Moving on

I woke up feeling really tired, with headache and my legs feeling tired and heavy. These are the same symptoms I had before starting the treatment with mesalazine, and unfortunately they've never really disappeared completely, they come and go, for no apparent reasons and I haven't been able to link them to any specific food, despite trying to keep track of what I eat.

A few more things to notice. As I entered my 4th week of mesalazine (pentasa) I noticed that I have what looks like a swollen gland, just on the jaw line on the right side of my face: it’s the size of a pea and I seem to be getting more spots here and there, especially on my face. Also, I began to feel itchy a bit everywhere, but I haven’t noticed any rash anywhere. I have no idea if this is related to the medication or not. A quick search on the internet seems to include those among the side effects of mesalazine. I will continue to take it anyway and see how it goes. Today I've seen again a little bit of mucus in my stools after a few days with no mucus at all

It's a long way out

The first consultant I saw, referred me to the gastroenterologist whom I saw today.

He looked at the test results and confirmed the diagnosis, Ulcerative Colitis.

I asked him whether it was worth following any kind of diet, but he said that it wasn't necessary and that I should eat everything. Still, it feels odd to be able to eat everything, there's gotta be something that could make things worse. I'm taking it easy, and avoiding the food that could cause irritation, like coffee, fatty food, chocolate etc. And then he gave me an extra two months on mesalazine, 4g per day, because apparently it takes some time on this drug before you can see any results. In fairness, I've been taking mesalazine for exactly 3 weeks today, and I have to say, things are a lot better.