Another new story

[Goldfish]

Hi there. Delighted to find this forum. I have just been diagnosed with Crohns disease last week and as most people at my stage am trying to learn more about it. I was just short of my 35th birthday when I found out and had been suffering from abdominal pain and diarrhoea for 8 weeks and my poor bowels were on over drive. I seem to have been lucky though as I hear that some people had it for several months before diagnosis. I may have had it last year without knowing it but that's another story. I have been on pentasa since yesterday (4 times a day) and presumed that I would be on it for a short while but have a repeat prescription for a year. Wonder if others have it long term and could I be on it for life or can I come off it if in remission. I realise that you may not have this answer and that's ok. Bowels seemed to have calmed down now (phew!) and am staying away from spicy food, caffeine and sweets at the moment and have started a food diary. My main problem is the fatigue. It's killing me. I had glandular fever 15 years ago and the tiredness is similar (but not quite as bad). I am taking fish oils, DGL Liqorice extract and pro-biotic 3 billion to help from the heath store. The only other medication I have is colofac to help the cramps and the dash to the loo. It does help.

Thanks for listening!

 

[Dexky]

Welcome Goldfish! Most people are on stronger maintenance meds along with the Pentasa. When do you see your GI next? You may be surprised by more prescriptions. Good luck!

 

[xJillx]

Hi and welcome! Yes, you will need to remain on a maintenance drug for life. Some people tend to stop taking their meds when they feel better, but often regret it later. Maintenance meds are meant to keep you well and to prevent flare ups. And as Mark said, Pentasa is a very mild drug. If it gets and keeps you well, I would most certainly stick with it! I highly suggest doing your homework in the Treatment forum to learn about all the different treatment options.

Also, good idea to watch that diet! Unfortunately, we are all different when it comes to what we can and can't eat. So think about keeping a food diary to record what you eat and any symptoms you may experience. You'll eventually be able to figure out what needs to be eliminated from your diet. Good luck!

 

[littlefreebird]

hi there, and welcome to the forum!!!
now that you're diagnosed, you will always be on some form of medication.
pentasa is used long-term, it's one of the safer medication used to treat inflammation and is usually the first medication a crohns sufferer is put on. i'd say that once your in remission you will remain on pentasa to help prevent a flare up from occuring as it is pretty much unheard of for a crohns sufferer to be on no prescribed medication at all (unless they've had surgery to treat the crohn's).
its great your keeping a food diary, many people find foods very high in fibre to be more problematic, some also avoid dairy. i've never found dairy, sweets or caffeine to be a problem but everyones different.
you may want to reasearch B12 injections, some crohnies suffer from fatigue, vitamin B12 can be measured by a blood test, if you're low on it you may need them, they really seem to help!
all the best, and welcome again. hannah.

 

[Goldfish]

Thank you everyone for your prompt welcome and replys. Welcome to pentasa then Ha! Never mind, as you say xjillx if it works I'll be happy to stay on it. Will check the treatment section after this. Thank you little free bird for the tip on the B12. My mother has to take it (doesn't suffer from crohns) and so I am slightly familiar with it. I will be glad to take it if it helps and the doctor did take bloods to check my fatigue as I told him that I am unable to do alot.
Hi Dexky. I go back to my consultant on Aug 10th. I am trying to get things under control before the school term as I am going to college this year. Lucky really to be doing this now as I know that I would have had to take time off work or college under normal circumstances. At least this way I am able to rest, or dash to the loo or whatever without having to worry. The consultant did say something about Limuran? (unsure,) for the fatigue but I think he wants to see my progress on the pentasa until the 10th.
Thank you all again so much its great to have people in the know to talk with.

 

[Dexky]

Was it Imuran? If so, it is another maintenance med. It's in the Azathioprine family of meds. You can read about it in the forum Wiki. Good luck!

 

[Goldfish]

Sorry Dexky. Didn't see your question til now. yes It was Imuran you are right.
I wonder if you can help me with another question or 2. I feel really good these past few days and am delighted of course. However I have been reading as much as I can of the threads.

Does the Imuran help with fatigue?

Am I most likely to progress onto other problems (fistulas and the like).

Is Crohns generally something that gets worse as time goes on?
Sorry if I sound ignorant but..well I am really. It seems strange when I feel so good right now. I dont want to scare myself or look for the worst to happen but trying to prep for what might come to pass and be ready for it. You did say in your post that I would be surprised with more prescriptions and you would be right.
Final unrelated Crohns question. If I want to start a thread who do I ask to set up that button. Thank you

 

[Gwen pippy]

Hey Goldfish

Welcome, you have def come to the right place, everyone here amazing and only to happy to answer questions, give support and have you cry with laughter with their experiences, i'd be lost without them. If Pentasa is working for you stick to it, as the guys said its probably the mildest of the meds used, but don't fret if it doesn't work or if your GI suggests other meds, they are only trying to find a balance to keep you well. As for the chance of developing other problems/ becoming worse, we are all different, some go on to develop problems but many do not.
Please remember your GI is there to help you and you should ask as many questions as you need to on your visits.
Daily diaries are very beneficial at this stage, fill in food/drink/poo/activities/stress, this will all help to give you a personal insight into things that might be affecting you.
Crohns unfortunately is unpredictable so the most important advice I can give you is rest when you can, watch what you eat, keep stress to a minimum, vent when you need to and Stay Positive.
I have been on both Pentasa and Imuran and found both to be effective.
We are all here to listen, good to hear that you are feeling well, keep it up.

Gwen xxx

 

[archie]

Hi Goldfish glad you joined. I can relate to exactly how your feeling as I too was diagnosed last yr in my mid 30's after only a short period of symptoms. I too was started on pentasa.

Everyone's prognosis is different as crohn's is such a diverse disease. Many people have had it for years since childhood and then others are diagnosed later on in life. Some people have all the symptoms yet no comfirmed diagnosis and then others have mild symptoms and are diagnosed quickly. The course of crohn's is totally individual and you will not suffer all the symptoms that someone else does. The main similarities is it tends to have periods of flaring and periods of remission and it doesn't necessarily get worse as you get older. Some drugs work for some people and not for others. It really is a trial and error thing but one thing is you'll get great advice here from people who are very similar to yourself.

Try not to read everything on the internet as you'll just get yourself into a tiz. Feel free to ask loads of questions that's how I learned and i'm still a novice.. Hope you stay well for a long time

 

[Dexky]

Hey Goldfish, I don't think I could answer better than Gwen and Archie! As far as posting new threads, maybe there is a restriction until you get so many posts...I don't remember to be honest. Go to the games section and have a little fun to build up your post count then you should be able to do anything. Good luck!!

 

[DougUte]

Hi Goldfish, and :welcome: to the forum. People here understand and are more than ready to help. Crohn's is a life long condition and will require life long meds. Even surgery does not cure it. But it is not a death sentence!

Your doctors will help you find the combination of meds to put you in remission. If Pentasa works for you, count your lucky stars and stay with it. Pentasa is a very mild maintenance med. I have advanced all the way to Humira (a biologic) because of the severity of my crohns.

Just :hang: things will work out.

 

[Goldfish]

Thank you all so much. Perhaps I had best stop reading sooo much as I may start looking for things that are not there at present. It really is a blessing to find this site and I do already feel so much better for chatting with you and hearing your feed back. You certainly know how to make a goldfish welcome
Dexky I shall "let the games begin" (off she trotts to find game section.....)

 

[Goldfish]

mini update I supose

Not sure where to put this and dont want to start up another thread as its just something small I wanted to add- kind of a mini update really. I went for my check up again today and both the GP and I were really pleased. Huge improvement, not perfect maybe but perfect enough for us. I asked him if he thought whether I would go onto more meds over time and he thought that was more than likely although of course no one can say for definite. I dont mind, in the sense that I'd rather be aware of it. No extra meds yet though so Yipee!:thumleft:
Anyway what I really wanted to say was that I have been so lucky to find a great GP really quickly and many people on here seem to have so much trouble with GP's and getting messed around so I wanted to pass on some words of encouragement that If you are in any doubt that your GP is clueless, cant be bothered, or just isn't interested enough then please go on a search asap for a new one. It was just so nice to talk to him today and have no Bull**** and I did think of many of you out there who are being driven crazy by ignorant, annoying people who have Dr. before their name undeservedly.:angry-banghead: There are really helpful doctors out there and I hope if you havent found yours yet that you do really soon. Best of luck everyone.:sun: