Only diagnosed this week

[Bren52]

I was told yesterday that I have Crohns disease and today was told I also have Ulcerative Colitis. Didn't expect to be told any of this. Can someone give me any advice as I have spent tonight worrying and realised that I am scared of what's ahead. Six years ago I had blood tests for coeliac and the results came back negative but it came back that I had pernicious anaemia. My doctor said usually coeliac and pernicious anaemia go together. 2 years ago I started to lose weight very quickly and everything I ate caused me to be in the bathroom for ages. 8 months ago I was feeling so run down and I'll with frequent bathroom visits and sickness I went to see a different doctor at the same surgery. She looked at me as I walked in ans said she was sending me to hospital because the weight loss was shocking. I first went to hospital in September,and the long variety of tests began. Today was the final test of X-rays and scans and now I know what's wrong but don't know how to deal with it. I see the consultant on 26th march but I can't worry myself sick for the next 4 weeks. Thanks in advance

 

[Franceshop]

Hey Bren, i dont have a diagnoses yet, still having tests! but you have come to the right place for advice and support. I have been told its probably crohns i have so i got here to find out some stuff about it, so i have a heads up. How are you feeling at the moment? did they give you medicine? hope now you know whats wrong you can get the treatment you need. xxhugs xx

 

[Bren52]

Hi. Yes I got medication but I don't know the name of it as I left the prescription into the pharmacy and have to collect it in the morning. I know it has a very long name. I have to take it for 3 months with month 2 a lesser dose than month 1 and month 3 a lesser dose than month 2. I also got drink sachets that I have to drink twice a day but don't know yet how long for. I was in shock as being told Crohns is one thing but during the camera test yesterday I was told there were ulcers but ulcerative colitis was diagnosed today. I don't know anyone with either so spent time tonight searching the Internet for a forum. Are you in the process of tests? I lost 56lbs in 10 months and although I was impressed with weight loss at the start I then panicked at the speed of it. I can't eat at all if I know I have to go out. I only eat when I know I'll be at home all day which I know isn't good. Going out for family birthday meals is a nightmare and Christmas was horrible. How far on are you with the tests?

 

[Jim (POPS)]

Hi Bren, Welcome to the forum. I was also worryed when they told me that had crohns, that comes with it and we all here felt that way. The good thing is that you came to the right place. The best thing to do is learn about crohns as much as you can. I find that this helped me alot. The people in this forum are GREAT. What I find is that the chatroom is a very good place to go to ask questions. Don't freak out about crohns. You will be ok and get well
Hope to see ya in the chatroom.
Jim

 

[Franceshop]

hope the meds help x i am waiting on colon studies and mri of small bowel and they are doing another endoscopy booked for 26 march i go on holiday 3 april and im worried that i'll be well enough to go! x
i have heard some people have a crohns nurse they can speak to when ever they need, did they offer you that service?

 

[Bren52]

Thanks jim. Really grateful for your comment.

I pick my medication up in an hour. I would've had them yesterday except the pharmacies have to order them in. So lucky hey were ordered yesterday for pickup at lunchtime today. No I wasn't offered a Crohns nurse but maybe at my consultant visit they will.

 

[Karajan]

Hi was your med budesonide if it was then this acts specifically on the terminal ileum sometimes depending on the amount of imflamation you may be put on steroids which usually very quickly bring down the imflamation and the pain and the Helps with the amount of trips to the loo. Let us know the names of the drugs you collect. You will get loads of help and advice on this forum. Don't worry too much as this is not good for crohnies.

 

[Bren52]

Yes Karajan,I was prescribed Budesonide 3mg g/r capsules. Went in to collect them and was told they can't get them until next week due to short supply. I then went to endoscopy unit at the hospital this afternoon and doctor said not to worry as I can start them when I get them. I've also been given Pentasa sachets 2mg and have to take 2 per day. I've had 1 so far.

 

[Karajan]

Budesonide is a steroid but doesn't have the same side effects as prednisolone you may get headaches but this does get better. It works directly on the terminal ileum I have had it several times and it works well but has to be taken regularly and the course finished. Sorry I have no experience with pentesa someone on here will get back to you as many people are on this drug. Try having a look at the NACC website it's got lots of info. Do plenty research and get to listening to you body in terms of symptoms or food intake. The more you know and understand the more you can advocate on your own behalf. Good luck in the next few weeks.

 

[Bren52]

Finally picked up my medication. Until today I had only started the Pentasa and already can feel a difference. :dance: I've to see the consultant on 26th so hopefully with the steroids and Pentasa there'll be more of a change by then. I've not been given any literature on CD/UC but I hope there's something available. Thanks to everyone for their replies.

 

[JennyT]

Hi and welcome to the forum, Im new here too but have learnt more reading here in one year than 30 years going to the Dr! Crohns is a journey and everyome is so diferent but Ive found reading one life story Ill think - yeah that was me, and then part of another persons story - cripes thats just what crohns did here as well! This place doesnt let you feel alone and everyone is so supportive and they UNDERSTAND. I wish you well for the months ahead, lets hope the journey will be an easy one, and if not at times your mates are here to talk to, question and lean on. Its normal to get worried and scared and even a bit blue from time to tome - as my Doc told me - Jenny you have a disease that can be very serious at times - its normal to feel that way! And as my late husband always told me - the sun ALWAYS comes up in the morning And so it does - wishing you many many sunny days!

 

[Karen]

I am sure that you will HAVE a GREAT time here with us and you will ALSO get lots of GOOD HELPS & MAKE LOTS of GOOD FRIENDS !!!