thanks ddd45 I hope you are rightup about it clearing . I don't self catheterise I had it put in and it was awful, I am still sore now and worry if they take it out It will be hell to get another...
Hi all, I'm about 4 weeks after having my colon removed and don't feel too bad however I do have a problem, when they took my catheter out in hospital I had to pee a couple of times and all was well...
I take capsules but not everyday, not really sure if they help, maybe if I increased my dosage it would....
I started with UP 5 cm in 09, the next year it was colitis 44cm, this year its all Colon, Pancolitis, however having good treatment and doing well at the moment....
Hopefully if you are one of the lucky ones things will improve. 8 months treatment is nothing with this illness in my opinion, so don't lose hope. I was bad for two years before they found a great...
I understand, but these symptoms were far far less than with some drugs I have taken that you feel you would rather be dead. Hair thinning Vitamin B6 brings it back in weeks, and it's quite possible...
Yes I do, I think its Brilliant. I have been two years suffering bleeding and D and pains. I have had Prednisone, azathioprine, and they made me so ill and did little for my symptoms. I told the...
What the heck is Kale? Never heard of it....
Hi Christine1946, thanks for that, I am worried a little whats going on My BP is up to 160 ish again today a few days ago it was in the 120's. I am in Spain, 1st class treatment here, It's just I...
I believe that floating is due to fat, not sure about the tablets but It has happened occasionally to me with some meds....
I have been off all steroids for over a month now and off Pred for about 4 months. One thing worries me, when I was in hospital I had lots of infusions and when I came home I had one vein in my arm...
In Spain the food was absolutely world class, (for hospitals) me thinks. It came up marked as a colitis diet? I am not a fish eater but I was shocked to find just how wonderful it is here. I have...
I've mentioned before that after all these powerful drugs (some which I tried for only a week or so and could not tolerate) is what I blame for my high blood pressure (190/110 and 95 beat) and some...
I have been with this illness a couple of years now, at one time I was close to death through lack of blood and my own stupidity. Up until the last few months I have only gotten worse but this last...
Hair loss, My doc told me to buy Vitamin Magna B6, it worked for me, I was also told of something else it turned out to be Regain and quite expensive, never tried it so can't comment on that one. try...
Hope you catch her. I don't think that you would have to be on this drug for years, in my experience it has just been until it did it's job and if it didn't bring any relief they tried another until...
Hi Newbie002, sorry I have not read all your replies but I will tell you that my story is similar to yours. I used the loo up to 40 ties a day at one stage and just had blood.I was diagnosed with...
Dr told me to take Magna B6 when my hair thinned due to the drugs.....It was cheap and it worked :yeah:...
Yes I can confirm PENTASA PROLONGED RELEASE GRANULES. are easy to take and available in most parts of Europe that I have been. I have used them but find the one I am on now work better for me, they...
I have tried this drug twice, once last year in Hungary and again in Spain this year, I can not tolerate it at all. It gives me a real fever and just about every other side effect you can imagine, I...
I went for my check up last week at hospital and they said I still have a tiny bit of inflammation and if I am still bad in 5 months they will try Remicade. I am a little worried as I have been...
I have had this for months and it's hell, it's almost cleared up now I have come off the steroids so it could be them, it's really horrible waking up wet and needing to change jamas in the cold...
Well I would say bleeding only on paper could mean it's very low down, I am not sure but fiber may make it worse try only soluble fiber for a day or two to see if that stops it, I get this quite...
Well, stopped taking Clipper 5g overnight, I did ask Doc if it would be ok after 3 or 4 months and she said yes. I have been having this last week the worst headaches I have ever had also chest...
I have been on BP tablets 12 years or so. I recently went into hospital and I stopped taking medication for it two weeks before, every time they took my BP it was Normal 135/80 ish. Now I am home and...
Ha ha yes the food in Hungary was inedible, just salt water and green slushy stuff with some kind of sausage in int, luckily I had my own private room with fridge and microwave so I made my own food....
Just thought I'd share this just to show you how confusing this illness is to me. My first stint in hospital was in Hungary, I had been bleeding for so long I was very weak and stupidly kept saying I...
Yes I do occasionally, I also get severe headaches from the back of head for short periods, maybe three days. 1g paracetamol clears it. I get the odd stabbings pains too, dunno what they are. Another...
Thanks for the link.....interesting. Poor mice........ Lets hope they get some Tabs knocked out quickly, I doubt it though it will probably take years, and will it work on every one I wonder?....
I have had very low iron for almost two years, I do take Iron tabs every day, it's still low though. I was going to ask if this would ever end. I have been bleeding badly at times which hospitalized...
Quote Quincy.., speaking of thinking...there's a cool Nature of Things on the 22nd...about "thinking plants"...just in case you're interested, but you probably know all that because of the PH and all...
Hi, Just seen this, I'm from Manchester uk, but lived in N.Wales all my life retired young to Spain and diagnosed with proctitus, moved to Hungary for a couple of years, Proctitus changed to Colitis...
I have similar circumstances, I get up in the morning and need the loo, not much, after standing and a few daily chores ie/cup of tea and a hoover up etc etc, I need to go again. but this time...
I think some steroids stop you getting a good nights sleep, I'm just coming back to being ok now after about a year of being up around 5 am every morning and that after going to bed at about 2am. My...
Hi, I have been feeling great for two months now with my new drugs clipper and Salofalk enemas, I just wondered if anyone has any ideas as what might be causing my new symptoms. I have been on...
Well I had them (3 a day) for a couple of weeks last year in Hungary Imuran and it made me so poorly. Doctors in Spain tried Imural on me (same thing) again but this time only 1 a day, made me so ill...
I had the liquid one for a week 60mil and 4g, bleeding stopped first nights use, now on foams only 1g daily best b4 bed, it gets me up early tho and stinks of sulpher when I go, not nice lol but it...
Hello and thanks...
Yep I got all those symptoms and many more on Imural/Imuran that was with only one a day, they had wanted me to increase to three a day after 4 weeks. I had fever like symptoms, always tired, feeling...
Every thing seems fine again now yippeeeeeeeee, and I got plenty of Brandy and red wine too :tongue: Maybe I should include the in my sig. :smhair:...
I do so hope you are right, I am on a bit of a downer now. I just had a full month not a drop of blood for the first time in the best part of two years. In my experience It usually only gets worse....
Hmmm I agree, since this disease takes over your life, it's hard not to talk about it, but no one seems to understand just what it's like. On here it's so different. I hate to say it but in a way I'm...
I can't make these out, I bought some but seem to have blood if I take them, not sure whether to keep them up or not (I'm on and off with them). I do hate this bloomin illness...
This disease is incredible, it can affect parts you didn't even know you had, I find if it aint the illness it's the medication, you just can't win...
I didn't know you had to taper off Salofalk enemas? I use it every night at the moment for the last month, today in hospital he wants me to keep the same treatment, my next visit is end of march,...
Full bottle of white wine :smhair: Never drink that but was desperate, was out of brandy lol. I also have like sciatica in my left hip and lower back sharp pain too, I've been normal for a month it's...
Get a toilet like they have all over Italy and France like a shower tray on the floor with place for feet either side, you can do it all ways then and have some real fun lol tongue...
After a month of being well, this morning back pains and blood, went to Hospital today too, keeping me on Clipper5mg and Salofalk enemas 1g, they are pleased with my progress.: I feel good except for...
From my experience, I would say yes, they often have for me, mind you I have been in almost continual flare since I was diagnosed....
I had an iron infusion every day for about 10 days whilst in hospital in August, (Red liquid) didn't do anything I could notice. I take Iron tabs every day now, I wish they would make me high :tongue:...