Crones Disease
Posted by: 3lions
7th Apr 2016 09:30pm
Hi Everyone,
Just wondering if anyone on here suffers from Crones Disease?
I was diagnosed back in November 2016 and have just finished a 15 week course of Prednisolone Steroid Medication, which had horrible side effects :( excessive sweating to a point wear I had to have cold showers all the time especially after doing some shopping, my face was like a beetroot. also the weight gain I have gained 15kg and I am so down at the moment it's not funny, I don't want to go out, since I have stopped the medication, I basically feel the way I did before starting it, so fatigued, bloated I only feel half decent if I don't eat anything. I am waiting to see a Gastroenterologist as the one who put me on all the medication, was quite patronising and blamed my depression when he put me on another drug an immunosuppressant, which made me feel awful, but he would have none of it he said everyone takes it and they don't have the side effects you talking about. I left his office in tears and have not been back, so I'm just plodding along at the moment.
Just wondering if anyone else has the same problem or suggestions,
Thank you for taking the time to read this
Regards,
Lise
Just wondering if anyone on here suffers from Crones Disease?
I was diagnosed back in November 2016 and have just finished a 15 week course of Prednisolone Steroid Medication, which had horrible side effects :( excessive sweating to a point wear I had to have cold showers all the time especially after doing some shopping, my face was like a beetroot. also the weight gain I have gained 15kg and I am so down at the moment it's not funny, I don't want to go out, since I have stopped the medication, I basically feel the way I did before starting it, so fatigued, bloated I only feel half decent if I don't eat anything. I am waiting to see a Gastroenterologist as the one who put me on all the medication, was quite patronising and blamed my depression when he put me on another drug an immunosuppressant, which made me feel awful, but he would have none of it he said everyone takes it and they don't have the side effects you talking about. I left his office in tears and have not been back, so I'm just plodding along at the moment.
Just wondering if anyone else has the same problem or suggestions,
Thank you for taking the time to read this
Regards,
Lise
You must be a member to reply to this chat topic. Click here to sign in.
Help Caféstudy members by responding to their questions, or ask your own in Café Chat, and you will get the chance of earning extra rewards. Caféstudy will match these and donate equally to our two chosen Australian charities.
Australian Marine Conservation Society are an independent charity, staffed by a committed group of scientists, educators and passionate advocates who have defended Australia’s oceans for over 50 years.
ReachOut is the most accessed online mental health service for young people and their parents in Australia. Their trusted self-help information, peer-support program and referral tools save lives by helping young people be well and stay well. The information they offer parents makes it easier for them to help their teenagers, too.
Comments 9
Leonardus
Do not know anyone
frannymanny
I am so sorry you are suffering in this way. Are you aware that there are Chrones Disease support groups. There are a few on-line groups and it can be very helpful to communicate with people who understand and may have useful tips.
Good Luck
3lions
Hi frannymanny,
Thankyou so much for your kind words, I have not had the best week.
and no I wasn't a wear of support groups, so thankyou very much for you reply and
tips, I really do appreciate it. It's very kind of you Thank you.
I finally have an appointment with a Gastroenterologist on the 8th June, so am hoping things will be
much better, as the last month has not been very good.
Thanks again for your kind words & tips about the support groups,
Hope you have a good week.
Cheers,
Lisa
pauline50
Hi Lise ,
I also have crohns disease and was diagnosed in 2003 had a bowel resection and was tried on different drugs till they found the right one for me i am currently taking Mezzal 3 times a day which seems to keep mine stable . I had a colonoscopy only yesterday after 10 years as i kept putting it off but i think it came back as good . I still have to go to the toilet up to 3 times a day and get really tired , some days i feel bloated and my weight also goes up and down, i also get depressed and sometimes do not want to even get out of bed . I also have Alopecha total hair loss before i got diagnosed with crohns which is also an inflammatory disease i am now 48 years old and lost my hair when i was 21 and got crohns at 26 . i really hope they find the right medication for you it took me ages till they got it right and thought i was going crazy no point in stressing that makes crohns worse as you probably already know , i get plenty of sunshine and go for 30 minute walks a couple of times a week i don't stick to any diet as food just goes straight through me any way i cant over do exercise either as i get really sore joints as crohns also attacks them and makes my crohns worse .
Good luck and hope my input helps Take care .
it is crohns awareness week on the 19th may maybe one day their will be a cure
From Pauline W.A . :)
3lions
Hi Pauline,
Thank you so very much for sharing your personal story with me, bless you :)
My heart goes out to you and I have tear rolling down my face, and I can certainly relate
to what you're experiencing. What a horrible disease it is, Also can I ask do you have any genetic problems with inflammation, its call HBL 27+
which make me anyway have a higher inflammation count, the range is 0-5, mine was 48, so after taking the 12 week course of cortisone
Prednisolone it actually went down to 3, but it puts on weight, and gee I couldn't believe the difference I felt, it was then I realised just how bad I was, but since I have come of that its starting to rise again, and thank god I have just received an appointment to see a Gastroenterologist on 8 June, as I have had no treatment since January. I know the bloating, I defo know the tiredness, I spend most days in bed, You're exactly right stress does play a part in the condition, I do stress a lot, and I have trouble sleeping too.
I am always tired, its just a nightmare, I will make a note of the tablets you are taking as in January they gave me an immunosuppressant called Azapin, 50mg they made me feel so ill, but the Gastroenterologist, basically said that the symptoms I was having don't happen with that drug, he was so patronizing, I left his office in tears, he was the one who did the colonoscopy, so I am now finally seeing someone in the public system, as I am hoping they can give me something to keep my inflammation levels down.
Please keep in touch Pauline to let me know how you're getting on, but my heart does go out to you, I think unless you have experienced anything like this it is hard to understand, as I am too at the point if I have to go out for an appointment, I don't eat anything at all before I go or, well you know what happens.
I will let you know how I get on after seeing he specialist, fingers crossed he can do something, as I cannot lay in bed all day every day, but you know what that's like.
Please take care & thank you again for replying to my topic is has helped me. I will be thinking of you and sending hugs xx Look after yourself
until next time we speak
Kind regards,
Lisa xx
duanne
chrones
3lions
It's Crones, sorry....No H
Mrs carbis
hi there, i do not have this terrible desiese but my brother in law has suffered for a number of years, he has had half of his stomoch removed. and is always sick.
3lions
Hi chooky,
Thanks for your reply,
I really feel awful now,
cheers