New to UC and this forum

Hi all.  I have just found this site and am doing lots of interesting reading of your posts. I was diagnosed this year with UC after a year of sympoms and despair.  I sound so dramatic!!

 

I was totally fine, ate a McDonalds take-out for dinner as I was rushing to meet my husband for some last minute shopping one evening after work, 30 mins after eating it, standing in the queue at the checkout I suddenly had to drop my shopping and RUN to the bathroom.  I only just made it and had really bad bloody diarrhea which after 4 weeks of non-stop, led me to seek medical advice from my GP.  He guessed food poisioning from the mcDonalds and gave the usual instructions.  A month later it was no better and I was going to the bathroom around 15 times a day.  After several visits to the doctos, I was finally referred to the hospital and given a sigmoidoscopy.  This was repeated in feb this year and Pentasa tablets perscribed then.  I initially had to take 2 a day but this was increased to 6 a day a few months ago.  These things are HUGE and I have to break them in half to swallow them but they do help a little. 

 

Since the increased doseage, I have noticed a difference.  I still go to the toilet about 7-8 times a day but there is less blood/mucus then before but still not right.  The biggest problem for me is the urgency with which it happens.  One minute I do not even need the bathroom and then withing 10 seconds I HAVE to go and once that happens, I cannot wait.  If I don't go to the toilet, I have an accident which, needless to say, is horrid.  It seems worst in the morning, as soon as I wake up, I have to go and always have to go three times before I leave the house.  In that sense, it is good because I just do not leave until I have had my three trips.  Otehrwise I get halfway to work and have to turn the car around and come home again.

 

This disease has made me lose my self confidence.  I used to be so self assure and outgoing.  Now I hate going to other peoples homes as I know I will need to go to their bathroom multiple times and worry what they think of me, and that they can hear me!!!!  I can't travel anymore as I panic.  several times this year I have been sat at the boading gate at the airport crying hysterically because I am worried I will need the toilet when I can't use it, during take off and landing or turbulence.  It was bad enough having the 'breakdown' in front of my husband but in front of my boss and colleagues it is even worse.  Meetings with clients and car trips to see family are a nightmare and I can't work out if my head is making the problem worse.  I think I am worrying that it is going to be a problem and that is making it worse.   I have read that stress makes it worse. I have a stressful job but I have always had that and I can deal with it but this UC is driving me insane.  I cry all the time, about everthing now, I refuse friends invites, I miss family get togethers, I avoid work trips.  This week I had to get my doctor to write to the courts as I was supposed to be on jury service but I got into such a state that I knew I could not sit on a jury.  I feel pathetic.  I am 28 and feel 108 years old. 

 

I am sorry this is so long, and graphic and gross and miserable.................... but I am so beyond fed up of this.  The only info I really have is from wikipedia.  My consultant at the hospital was nice the first couple of times I saw him and gave me a 'pack' with a few details about UC in it but nothing major.  My appointments with him are every 10-12 weeks and last 5 mins and they don't deal with the psychological (spelling????) aspects of it.  I am sure a big chunk of my problem is in my head and that is maing the symptoms worse but I do not know how to deal with that.  My poor husband is at the end of his tether, he really does not know how to help and is struggling to cope with a wife who has suddenly, literlaly overnight turned from being a competent, outgoing, cope with anything kinda girl to a crying, weeping, bathroom hogging, tired, haggard looking witch!  I don't even reconse me anymore.

 

Oh I do sound sorry for myself don't I.

 

I just wanted to vent a little, get it all off my chest.  It's hardly the kind of thing you can talk about over lunch with your friends.  Plus five minutes afte rlunch, I'll disappear to the bathroom anyway!  Does anyone have suggestions?  Will I end up with a bag?  Am I going to get liver failure (see wikipedia) and die?  Is it EVER going to go into remission?  Becuase as yet, it hasn't and it will be 2 years in Jan since it started and I seriously do not think I can cope much longer like this.

Hi Fruitgirl, thanks for the speedy reply.

I am indeed in the UK and had never even heard of UC until February this year.

My next appointment with the consultant is the week after next so I am going to research as much as I can between now and then and go 'armed' with knowledge and ask real questions instead of answering the three questions he asks and then leaving as frustrated as when I arrived.

I feel better just for typing all the blurb in my initial post.  Which, incidentally,  had to edit becuase my spelling and typing were dreadful!

Thanks again.

Welcome Sofedup28! This is a wonderful place and you'll learn so much. I was diagnosed in July 2007 and finally went into remission about mid November of that year only after being on Prednisone for the entire time. I stayed in remission until about 2 1/2 months ago. I am working on getting myself back to what a UCer might call "normal." Good luck and remember there is never a dumb question or comment!!! I was faithful about checking the community boards when I was really sick. I got better and slacked off, but as you see now I am back faithfully checking in!

sofedup...vent away as it's good to get all that stuff out of your system, and all of us can relate to what you're going through.

And I've done the whole waiting at a boarding gate and wondering how I'm going to get through a flight. In the end worrying about it doesn't help, so just do the best you can, and then let it be.

Definitely do as much research as you can so that you can work with your doctors and better understand whatever treatment options you decide on.

Some of the doctors I've consulted with have made changes to their initial recommendations for dosages and medication after I've had a thorough discussion with them, as your treatment does need to be tailored to your specific situation.

Hope you're fine soon.

I am so sorry that you are feeling so bad and have not been able to get this under control. Please know that your current situation likely can be greatly improved with the right medical treatment...your current state should not be permanent. As others have stated I would ask your doctor for different medications. I highly recommend some type of rectal medication (maybe cort enemas) and as fruitgirl stated you might need a course of prednisone to kick this flare into remission. It is a strong drug but for many (including me) once you are in as serious of a flare as you are in, pred is the only thing that will shock your system into remission...you will likely feel much better within a week of taking pred. After you get this under control you should still take something to maintain remission. I usually take Lialda (anywhere from 2-4 a day) and Canasa (rectal suppository) to maintain remission. I have been taken off of the Lialda because I am trying to get pregnant. I am right now tapering off of prednisone and taking Canasa daily. Again, I am so sorry for your situation! Do not settle for this, most of us can get much better and have a good quality of life. You are not doomed to live as you are right now, push your doctor to get you on the right medications ASAP!