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.