Hi all,

After almost three years of feeling terribly ill, I was diagnosed with Crohn's two weeks ago. It kicked off with what I thought was a holiday bug from which I didn't recover. I lost two stone, had diarrhoea and dreadful pain and have felt so exhausted that I've been unable to do much at times. I've been to A and E/casualty ten times over this period and have been told that I have constipation, 'overflow diarrhoea, depression, anxiety and irritable bowel syndrome. I've known all along that there was something badly wrong and it's been terrifying not knowing why I felt so bad. Tests-wise I've had bloods, stool tests, 2 colonoscopies, gastroscopy, 2 CT scans and umpteen X-rays. None of these revealed anything except a couple of blood tests which showed anaemia. Eventually in October one of the doctors had the sense to send me for a capsule endoscopy which found the Crohn's in the small intestine.
My main reason for seeking support is that I'm traumatised from being so ill for so long whilst being told at times that I was getting things out of proportion! I have felt so lonely, unwell and frightened for so long now that I can't remember who I once was. Now everyone is saying how good it is that I'm diagnosed but I'm having difficulty thinking that I will ever feel well again in the future (and also worried that I'll never feel happy or normal again). I suppose I've lost confidence. My consultant has just put me on Prednisolone for a month which I've been taking a week now.  I feel much better physically but I know they're just to get me into complete remission. Then he wants me to go on Azathioprine if my blood tests come back okay. I've had a look for info on Crohn's on the web but they're not helping me cope as I keep reading about horrible experiences and surgery and so on. I guess I just need someone to help me know that there is a future with this disease, that I will have some quality of life with treatment and so on.
I'm so sorry to moan here. I used to be known for my cheeky sense of humour but it's all but disappeared! It's difficult to be open with family as I don't want to burden them so I'd be so grateful for anyone who can help me understand what it's like to live with Crohn's.
Many thanks to you all.
Gail

Hi gail, my heart goes out to you, dont frett, hunni, has you will see from reading other posts on this forum, that we all have simular stories, im not 100% diagnosed yet, all my test come back showing nothing, but like you i lost weight, nearly three stone, so like you im very worried, i get real , down hearted when they find nothing, has like you im in constant pain, and continually have the runs, i have an MRI scan booked for the 24th so hopefully that will give me some answers, i also have a bloated stomach, and every time i eat my tummy goes like im pregnant, the pain goes worse, and then hey presto the runs, i went to my inlaws on saturday for a 3 course meal, (and they cook every thing i can normally eat, there very good ) but after every course i spent 20 or so mins on the loo, As my in laws know and are very understanding they totally expect this to be normal, lol normal, thats a thing i dont think ill ever be again, And also gail, i was put on anti depressants last week, because ive finally cracked under the strain of not knowing my diagnosis. so gail your story is so like mine, and i know you feelin down and depressed, but the truth is youve helped me alot today, has i now know that im not alone, hope you can get some comfort out of knowing even though your poorly some good has come out of it, i know that wont make you feel or get better, but surely its a start, Thank you gail for your post keep us updated on your journey, i for one would love to keep in touch with you.

TC XXXSUEXXX

Welcome Gail and try not to fret about Crohn's. Now you're diagnosed there are a lot more things that can be done for you. Although you'll hear a lot of us moaning about this drug or that drug not working or some side-effect or other, most people with Crohn's are able to be put into remission for years by one treatment or another. You should expect to have most or all of your symptoms under control soon. Then things should return to some sort of normality for you.

It's a scary time when you're first diagnosed as they've basically told you this is an illness that you'll probably have for life (barring a real medical breakthrough) but it is also good news as they will now be using the correct treatment for you rather then stabbing around in the dark! We all know the worders of Prednisalone but as you say it is really just a kind of "reset button" so that they can start trying the regular Crohn's treatments on you. The fact that the Pred is working is a good sign and hopefully whatever they put you on first will do the trick! Whatever happens, we're here for you so welcome to our little community.

Nigel xx

Hi Sue,
Thanks for your lovely message of support. Yes, it's better to feel you're not alone with this. When things go on so long without any hard evidence from tests you think you're going mad! At times, I actually believed that perhaps the doctors were right, that I had had a nervous breakdown which was affecting my guts. I'm so mad that I let myself believe this at times because it also made my family doubt my sanity too. This made me feel very lonely because you can't take the symptoms and give them to another person so they can understand how bad it is.  I'm 44 and have always been small so losing two stone made me look skeletal - and still it seemed that people were thinking it must be related to stress and anxiety. I had to consciously make myself keep in my tears and distress at times so that people would take me seriously but of course, then they think things are better! So I understand what you're going through. It's dreadful being physically ill and without a diagnosis. I really want to encourage you to ask about the capsule endoscopy. That's the test where you swallow a small camera in a pill. It goes all the way through your small intestine recording images and misses nothing. I think it's expensive so they will probably only want do it after all other tests have been done. But you have suffered enough and I think you should push them for this now if you can. I wish they'd done it earlier and I might be in a different place right now.
I hope the MRI sheds some light on things. IN the meantime, I've found giving up my (much loved) white wine, coffee and anything fibre-rich has helped a lot. I think I might also investigate the use of elemental liquid diets to help with bad spells.
Good luck with it Sue and keep on at them. You know when your body is not right. The antidepressants have helped me a little but don't let them think your problems are psychological!

Be strong honey and fight for the support you need and deserve! Gail xx

Hi Nigel,
Many thanks for your post. I do need to hear from those living with Crohn's that things will get better. I can live with some episodes of ill-health as long as I know that there will be some normal times to look forward to too. I think my experience of the last three years has made me lose all confidence...after that amount of time you think, 'well, this must be how it's gonna be now'. And yes, the idea of it being a life-long illness is very depressing. I have thought that I'd rather have something life-threatening but which, if you got over it, there'd be a future life ahead. Isn't it terrible what thoughts you can have when times are tough! This is one reason why I think the forum is great. The need to talk with others in the same boat is very strong. It's reassuring to know there is some treatment that will help most people too. I'm looking forward to the day when I get some stability and I can enjoy some normal things like going on holiday and going out with friends without worrying about being ill all the time.
Your smile in your photo is reassuring too! I tried uploading a photo but I cocked it up. May have a go another time.
Many thanks again and I hope you're feeling well at the moment.
Gail xx

Hi Gail

Welcome to the forum.

Like all serious illnesses you only ever hear about the worst cases so it's not surprising you're terrified about it all. The lack of definitive information also doesn't help.

Crohns is a bit of funny disease in that if affects different people in different ways. What you mustn't do however is to ever think your degree of illness isn't as bad as someone elses. We're all in the same boat and you must demand proper support from Doctors, friends and family.

Some people with Crohns go on to live very normal lives with the right course of medication. Its all about trial and error with each drug. Eventually you'll find on that works for you and with a bit of luck you may even find you don't notice the illness much at all.

Reading some of the stories on here can be frightening but if there is a silver lining in each of our tales its that we've all managed to cope in our own little way. Your inner strength in these times of pain may well end up surprising you. I've been through the wars but I can promise you this illness is only ever as debilitating as you want it to be.  

Keep us all posted on developments and rest assured we're all here for you to lean on anytime you feel the need.

Oli x

Hi Gail, sorry you are having a hard time right now.  The Pred you are taking will help get things on track and the Azathioprine will, hopefully, be a longer term answer.  Everyone is different and will have different reactions to drugs and  different complications etc so try not be too down hearted by the stories you may read here and other places on the net.  Just because others have had a bad time and many surgeries it dosen't mean that will happen to you.  I have found there is always someone worse off and if you have a good day enjoy it.    I understand about the confidence thing and it is very hard to talk about how you feel to people who don't really know how it feels, thats why this is a good place to get things off you chest.  Hope today is a better day for you. x

Hi Oli,

Your words of reassurance mean so much! Thanks for taking the time to post. I'm feeling a little less anxious today. Mind you, that could be the Prednisilone working - my God, I feel like the bionic woman! My guts have settled completely, and the fatigue, joint pain and malaise that's hung over me for three years has gone. Now I remember what health feels like.
Thanks for the tip too about not assuming others are worse off. I'm already annoyed at myself because of the way I've carried on the last three years putting on a front, trying to keep working, smiling etc...then collapsing as soon as nobody's looking. I'm afraid I'm not used to demanding care so I will keep your advice close to my heart.
Thanks again Oli; I will keep you posted on my progress.

Gail
xx

Hi Linney,

Thanks lots for your post. I'm really grateful for the support from others going through the same thing. I think I'm panicking that there won't be anything to help me....I suppose after three years of reassurances from people that things will get better when they didn't.....makes you a tad pessimistic! But as you say, there are a variety of drugs out there for me to try. I'm learning a bit about these too and the shock of having to be drug dependent is getting less.
Anyway, many thanks again, and I'll keep you posted on my progress.

Gail
x

hi Gail

My experiences with Crohns have been very similar to yours, it took five years for me though! Mine started after a trip to Mexico but my symptoms felt more like a stomach ulcer initially.... Although I was constantly on the toilet and lost three stone I had a vile burning gripping like pain in my mid intestine area. My stool samples kept coming back full of fat so I had a year of Pancreas tests and treatment and just got more and more unwell..... during the next four years it was everything from IBS to ME and I spent a lot of time in hospital. Like you it was the capsule that diagnosed me, small bowel quite badly ulcerated, I am on Pred at 40mg and have been for some time because as soon as they lower the dose my symptoms rare up very quickly, I'm also taking Azathioprine but too early yet to see if it is going to help. I wanted to drop you a line because I so understand the devastating effect of waiting so long to be diagnosed and being so unwell makes you feel alone and depressed. I'm not out of the woods yet and the drugs make me feel crap but what I would say is that mentally I feel so much more positive, you are in safe hands with the gastro doctors, it may take time but they will get you as well as can be and always keep an eye on you so try not to worry about the bigger picture and take one day at a time . Good luck and I hope you soon feel better

Hi Chihuahua,
Your experience does sound exactly like mine. I get the same intense ache in my upper stomach area and I also wondered if there was a stomach ulcer at times. But the photos from the capsule endoscopy showed the inflammation, ulceration and scarring is in the small bowel. Having said that, I've also had dreadful pain in my pelvis and in what feels like the colon yet they couldn't see anything there.
Isn't it weird that our problems began after a trip abroad? Makes you wonder if a bug triggered something in the body...
I've been taking 25mg of Pred for two weeks now. It kicked in after four days and I felt loads better for about a week. But yesterday I got the dreaded ache and colicky symptoms back and today has been much the same. I don't have any bad side effects from the drug yet  - in fact, I feel amazing, full of energy and it has cleared up other inflammatory things going on - joint pain, skin rashes, sinus trouble, asthma. I hadn't realised I was so ridden with inflammation until I took the Pred! Makes me wonder if these auto-immune diseases are all interrelated.
How often do you get to see your consultant? If you have relapses, so you ring them to ask for medication or what? It's going to be another two months before I see my consultant again and I don't want to spend yet another spring feeling dreadful.
Has your consultant given you any idea of a long-term prognosis? Do they manage to get people fixed up eventually....or is it just too unpredictable? It's so frustrating not knowing what the future holds....but I think I'm coming to terms with things a little.
Thanks for your reply. It feels good to have someone whose Crohn's is similar, to talk to and exchange notes with.
How is it going with the azathiaprine now? Hope you're having some good days.

Gail, xxx

Hi Gail,
The hardest thing to come to terms with is how your toilet visits change, but once you have some control over this ,you start to feel like you are getting your life back again. But the first thing is getting it into remission  and Prednisolone does the trick, then comes the experiments with the drugs (Questran,Azathioprine,Pentasa,etc)to keep you in remission, not forgetting the Loperamide to control the diahorea.when these are all in place then you can start to feel normal again.
I don`t mean to be a Job`s comforter but I`m speaking from 32years of Crohns with 2 bowel resections and various other drugs, but I`m still here !!  It will slow me down but IT WILL NOT BEAT ME!!!!
Chin up,
Delilah

Hi Delilah,

Wow..32 years! Thanks for a very reassuring post. It feels better to know there is life after Crohn's! It's really good to talk with other Crohnie's too as I've felt very lonely with this illness. I'm so glad the Pentasa is working for you. Is it an immunosuppressant? I rang my doctor yesterday because I was following instructions and tapering the Prednisolone down to 15mgs a day from 25, and the symptoms were returning with a vengeance. He told me to increase back up 25mg, which is a relief. It's the pain and bloating that get to me the most. After three years of hell I just want some relief!
Gail
xx

Gail, hello there. My son is 13 and has been through a year of different drugs, he is now on Aza and it seems to be working, he has been in remission for a month and fingers crossed for many more.

My attitude to all of this has been, any day without pain or diarrhoea, is a GOOD DAY! We learned very much to take one day at a time, and not plan too much or think ahead. Everybody is different and for some, no drug will work, it becomes surgery. Our Consultant upped his game after I threatened an official complaint against him - he was SO nice to me the next time he saw me! LOL Sometimes you have to kick their butts but you never give up.

The NACC website is great for information, read up on everything, know the names of all the drugs and what they do, then you can ask questions the next time you have an appointment. Take control for yourself.

I wish you all the best and hope to hear more of your story as time goes on.

Lynn x

Thanks for your lovely warm reply Lynn. I have found the support on here such a help.

It must be very very hard for you watching your son go through this. I find that I get this great surge of anger when I hear about children with this disease...it's like 'Hurry up and find a cure!!!!' I'm glad to hear the Aza is working for him. That's wonderful. I have heard that this drug can help some enormously. A friend of a friend told of a young girl (1 with Crohn's who's been symptom free on Aza for three years.

I joined the NACC. I think it's great that there's lots of info out there. I've been really pro-active in the last three years,. pushing the doctors all the way, constantlyy ringing up and demanding appointments, paying for tests etc...but still it took three years...I wonder how long it would have taken if I'd waited for them to act at their own pace!  But having knowledge is really empowering I think. It's good to know what the options are and makes you feel less helpless.

Anyway, I'm still ok on the Pred for the mo. I will let you know how I get on....and I'll be keeping everything crossed for your son's progress.

Thanks again for your words of support,

Gail
xx