Hi
Im Gemma im 30 and i have a little boy who is 2 and a half i was diagnosed with crohns years ago after a colonoscopy i started with the consultant at my local hospital he placed me on steriods and asacol which i took although i was ill the whole time with constant vomiting i finished my corse of steriods and the consultant though the vomiting would stop but it continued getting steadly worse i spoke to my gp and he thought i should stop with the asacol and go back to hospital which i did but the consultant told me asacol was the only thing he was prepared to prescibe to me i found this odd and upsetting but my gp just refered me to the next closes hospital. where i was put on pentasa and told its not out of the ordinary to have such a reaction but i have struggled with pentasa still getting bouts of extreme sickness and they only reduce my bowel movements im still in a great deal of pain a lot of the time and as i said i know have a little boy and i feel his life is being affected so much my mum has been a god send but she has just been diagnosed with bowel cancer and i cant keep being ill like this does anyone have any suggestions on how to speak to my consultant about this as i have always felt very fobbed off by them
Thank you Gemma

Hi Gemma,

Hope you are feeling better? I was reading your message and would advise you do what I did and make a list of all your concerns and questions for your consultant, take them with you...I know you might think it strange to do that - its not a very nice illness and you must ask the questions and try to get all the help you can.

Speak again to your Gp and ask  him/her about any help or assistance you could be given. When I spoke to my consultant I found it difficult to have enough time to talk, so its not easy is it?

Hope you get more help.

Hi Gemma,

I agree with Peanut, writing down your concerns is a good start. I would also recommend using your gastroenerology nurse specialist as an advocate, if you have one. The other option ,if you really are getting nowhere is to get advice from the PALS, Patient Advisory Liaison Service . Hope you feel a bit better and that this helps a bit.

Take Care,

Mary.

Hi
Thanks everyone for your replies
Isaw my consultant friday and when he saw my weight loss he agreed that pentasa was not the drug for me he has taken me off that and has written to my doctor asking them to put me on steriods for a 6 week course and then we see what happens then although i dont have another appointment until the 13th of november
Gemma x

Hi Germaide, welcome..

Hi Gemma!  Very interested in your post.  I have been on pentasa granules for two weeks and at first I thought they made the Crohn's neither better nor worse.  However last few days I've been suffering terribly from diarreah mostly mornings, until it calms down throughout the afternoon and evenings.  My weight loss is ridiculous now, and that's the thing that worries me most.  At very best I weigh 8 stone and was horrified this weekend when I got on the scales and saw I was 7 stone 5!  Yesterday I was 7 stone 8 but again today I've had the diarreah six times in three hours.
I'm very interested in steroids as they seem to be the best "treatment" and might also make me put on some weight.
Will you let me know how you get on with the steroids?  
Also, my appointment with my consultant is not until 13th July, I can't last that long if it stays like this, can I request to see her sooner or do I have to wait until July (NHS this is).

Hello peeps,

Sorry for jumping on this thread, but I have a word of warning about Prednisilone.  I took this for two years and a first I thought it was a wonder drug, I even felt like superman.  As time went on I started to have all manner of health problems, it started with my eyes which was dreadful pain (steriod induced glaucoma) skin problems, weight gain (moon face), constant nose bleeds, and worst of all my personallity changed.  I have also discoverd they affect your hormones over time.  I decided to stop taking them last August and yes I have bad days and the odd good day with Crohn's, but I would sooner live with the Crohn's than the side effects of the steroids.  

If you do take them and they work for you, Fantastic! but please be aware of your health and any problems unrelated to your Crohn's consider the steriods as the cause and you will not be far wrong.

Very best regards

Ken

HI GEMMA, sorry your not feeling very well, have you not been offered anti-sickness tablets from the consultant? should maybe help in the short term, the other threads mention steroids, these are in no way a wonder drug, and should only be taken when and if really required, im testament to that, as i have become resistant to steroids over a period of ten years, things will improve gradually over time, just  make sure you believe it! im sorry to hear about mum, i hope you both pull together  and beat off these terrible diseases, for you and your wee boy, i have a 12 year old girl and 18 month twins, they help me, so in return i think of whats best for all of us not just me, also start doing a bit of research into CD if you haven't already , the more you learn the more you'll ask questions from your Gp and consultants, its your body, you'll know whats best for it, dont give them a minutes peace, ill stop blabing now, am supposed to be decorating, be well Gemma,
later cha

diagnosed CD and collitis sep 98

Hi Gemma,

Let me introduce myself first of all. I'm Sarah and I'm 21, recently diagnosed with Crohn's. It is good that you have been taken off the drug and your GP agress that this is the best course of action. However, the consultant should be more accommodating and consider other drugs that may suit you better. Have you explained to him/her about your concerns for your son and your mother? You could go back to the consultant and explain all of this and they might consider other things. I was on anti-sickness tablets for about a month, which did help but I decided to come off them as I knew there needed to be a point where I shouldn't be relying on medication to stop me vomiting all the time. But if they work for you then you should take them.

Also maybe looking into Crohn's a little more might help you to come up with ways to control it. I find that peppermint tea works wonders for stomach cramps and abdominal pain. There is a good support group called NACC, here is the website if you are interested in joining : www.nacc.org.uk. Even if you didn't want to join it still has some useful articles and information on there that could help you.

In the meantime, take care of yourself. Hope this helps.

Sarah

Hello Gemma.  I'm new here too.  I've noticed that you've not replied in a while and I hope you're better with your symptoms.
I've had Crohn's for 30+ years, and I've been through a lot of pain, misery, and suffering.   I would suggest that you follow the advise of your care providers as sometimes it takes a while for your symptoms to subside.  I am a firm believer that whatever works the best to get you under control the fastest, may be the best for you now.  
I've read postings about Prednisone and the awful side effects.  Please don't let that scare you.  Predisone is a wonderful drug if it helps you gain control of your symptoms.  I have been taking Prednisone ever since I was first diagnosed 30+ years ago.  I have taken many dosages, but I think the maxium was around 30mg a day.  I found that my body responded well to 10-15 mgs, and I was able to taper after that.  I currently take 1mg a day to control joint pain. A type of sudo-arthiritis in my joints.  Different people react differently to all types of medicines, you and your care provider will just have to have a trial and error for the best for you.
Hang in there.  

Crohnsproof

hi gemma just read your thread again and have had an idea , do you have problems with dairy ie cheese milk do they make your tum bloat even if not all makes of pred is full of lactose which can make u womit and stuff i cant go on them for that reason as im intolerant to lactose even smallish amounts can set me off. i used to have them to dry up my chest as have bronchial asthama, check food stuff as well they put it in all sorts of stuff smokey bacon crisps but not roast chicken odd eh! so as i said just a thought sorry to bother u

hi all, ive recently been told, i may have colitis, or crohns, as ive been hospitalized  with stomach pain, the runs, abdo pain back pain, pain in my shoulder, pain in my shins you name it i get pains in it, when i get the runs once ive been i get some relive, until the next episode which is usually an hour apart, if i dont have the runs im i terrible pain in my lower abdo, i also get a funny drawing pain in my bottom has if its trapped wind there, can any body tell me is any of these signs are symptoms of crohns im at my wits end at the moment waiting for the camera to go up, but in the mean time im on tramadol for the pain, somebody please help me make sense of all this thank you sue

jeany, call the hospital, ask to speak to your consultants ssecretary. ask her to please move the appoinment forward, they useually do.

tattyted,   when you have your colonscope, do NOT Leave the hospital until you have had a good fart. may sound strange, but they fill you up with air so they can see better. i didnt realise this and was farting on the bus all the way home!!!! lol
sharon

Hi merry ive had the colonoscopy and know exactly what you mean, im actually goin to see my gastro tinite and im in flare up mode not sure yet how i will make the 20 min journey, to the hospital, omg the thought of it is worrying me stupid, extra pair of pants baby wipes ,and porta potty me thinks lol, I let you know how i get on XXXSUEXXX