So happy to have found somewhere to learn more!

[soupdragon69]

Hi Folks,

My name is Jan, I am 37 and live in Cambridgeshire UK. I was just told 3 days ago I have Crohns..... I have spent the last 10 years trying to get a diagnosis, mainly because I had other health issues and was told originally I had ME (which I didnt agree with or accept), then I was told I had underactive thyroid (which I do) and also developed allergic asthma around the same time.

All the symptoms I had like muscle and joint pain, abdo pain, the constant running to the loo and extreme exhaustion were just written off as ME. Over the last 5-6yrs things have gotten progressively worse and it got to the stage about 2mths back where I went to my local GP and ended up in floods of tears because I just couldnt cope with the pain and exhaustion any more. Thankfully my current GP and his colleagues have been fantastic and supported me throughout the last 3yrs I have been at that surgery. I saw him this evening and he said it was going to be interesting to see if my asthma stabilised with sorting out the inflammation Crohns wise. I agree with him because every 4-8weeks I end up with a chest infection and for a long time my asthma cons has been adamant I have chronic infection somewhere but couldnt pinpoint where. I did find it very hard though when my asthma cons just roared with laughter at the thought I may have an absorption problem as I am overweight. Will be interesting to see his face in Feb!

I changed jobs recently from 12hr days x3 a week to mon-fri 9-5pm although it is more flexible than that also which has helped me to cope. The 12hr shifts left me literally on my knees and in bed on my days off. My quality of life deteriorated so much. I still am shattered and have taken the rest of the week off as annual leave to allow me time to absorb and research things. I seem to still end up exhausted and in bed every weekend but am hoping over time this will change and I will regain some more of my life back.

Initially it was thought because I am of Irish decent I had Coeliac Disease. All the tests were negative though. Tuesday of this week I had a colonoscopy and the gastro cons told me afterwards my terminal ileum is badly ulcerated and there is a large ulcer there. He wants to see me before Xmas to start treatment. I also am not absorbing my bile salts so I guess he will treat me for that too.

I only came across this site tonight via google and have enjoyed scanning the threads and learning from you all. Just thought I would say "Hi" and that I am looking forward to hearing from you and participating too.

Sorry for the long waffle and also if I get the posting wrong!



Jan

 

[DannyB]

Hye Jan,

Thank you for joining us here on the forums, always happy to welcome another member on board. Sounds like you have been through the mill a bit with all the health problems and that you have been going through.

Look forward to hearing from you and seeing your posts.

Take Care

Danny

 

[Jeff D.]

Welcome to the forum

 

[tonya_n_ky]

Welcome to the forum

 

[Nancy Lee]

Hi Jan and :welcome: to the forum!

I'm sure if you research here you will come up with a lot of answers.

If you still have questions, don't hesitate to ask, as more than likely
there is someone here who has had the same symptoms or meds.

Again...welcome.

Hugs~Nancy

 

[Karen]

Jan ... I am sure that you will have a great time here so jump right in and have some fun and see you around soon !!

 

[soupdragon69]

Thanks so much

Hey Guys,

Thank you so much for the lovely welcome. Originally when diagnosed with the ME my GP in Ireland told me it was all in my head and I was a hypocondriac - I kept going to him every month saying there was something badly wrong and I was 27 and shouldnt be feeling like this but because all the tests came back negative he wasnt interested and decided I was making it up! That is why I never accepted the diagnosis because I felt it was a get out clause for him.

You can guess my confidence was in my boots hence I just got on with it for all these years. Its only been because my current GP practice actually listen to me now that I got the courage up to finally blurt it all out that day....

I knew I was hard to diagnose because my thyroid problem only showed up when my liver function deteriorated not in the usual thyroid blood tests. My gastro cons has been fantastic and when I told him what happened before he said Jan I have no intention of telling you its in your head! He also thinks I may have an endocrine problem that is keeping the weight on me despite all the diahorrea but wants to sort out my gut first.

My diagnosis this week has been a relief in many ways but even though I thought that is what the problem was and was proven right in the end I still feel pretty overwhelmed by it all.

I just want to say thank you so much for a wonderful site and also for all of you here who truly understand what its like to live with this.


Jan

 

[mikeyarmo]

Hello Jan,

Thank you for joining us. I hope we can provide you with more information than you ever wnated to know about this disease . There is a lot of information on here, so feel free to explore all you want.

I am sorry to hear it took so long to properly diagnose you. Hopefully though you can see that things are now moving in a better direction. Especially with the job transition, there is no reason not to be optimistic about the future.

 

[skeet]

Aloha Jan and welcome to the forum. It would be nice if finally getting a diagnosis was the end of it, but it's just the beginning of a new phase, as you know. Hopefully you'll get the tretment you need now and begin to feel much, much better!

 

[soupdragon69]

Hi Mikeyarmo,

Yes the info on the site has been invaluable as has the outlook of folks here. I have worked very hard to try and maintain as much of my life as possible and things got so bad concentration wise I had to put a research module on hold last year due to poor concentration and exhaustion.

My new boss wants me to commence a module in teaching that will eventually lead to a masters degree and I got the letter this morning saying I was accepted. I think being able to achieve other things in my life will help me to keep things in perspective if that makes sense? In recent weeks I had decided to pick up the reins of my research module too because I figured things were not going to improve and I just had to get on with it if I wanted to achieve anything for myself as an individual. Now that I can see some possibilities of stability and have a reason for why I have felt so rubbish my thoughts are that I will be able to attain what I want to and enjoy it also as long as I am patient and pace myself!

Skeet,
You are very right it is only the beginning but it makes it so much easier knowing folks here understand and are willing to input into the health, and quality of life of others with their own experience and thoughts. That means alot to me and I value it greatly.

Thank you both for your thoughts and comments and the time to answer me too.

Jan

 

[Kev]

Hey Jan, welcome to the forum.. Please excuse my ignorance, but what exactly is the 'ME' you're referring to? Does it perchance stand for 'Mental Exhaustion'? My 1st GI thought that I was suffering mainly from 'Depression' with a minor case of atypical colitis thrown in... Wasn't until later AFTER another round of diagnostic tests where he discovered my little colitis had spread so far, so fast that I needed an emergency operation did he change his opinion about my status.. Speaking of status, seems to be status quo for us with IBD to have been misdiagnosed, or written off as some form of psychosomatic illnesses, before the real diagnosis is made... I wonder if those doctors really know as much as they try to let on...

 

[ruthymg]

Hi Jan and welcome. Sound like you've had a tough time, thank goodness you now have a diagnosis. I too had tests for coeliacs, my doc was convinced that thats what I had. I have an Irish grandmother but didn't know about the link you mentioned, thats interesting. Unfortunately most peoples stories are similar in the length of time it took to be diagnosed with crohns, It took over 6 years for me. My first diagnosis was coeliacs, then pancreatitis, then an absorption problem, and finally crohns, so I can understand to a certain extent how you feel. Hope you find this site useful, theres so much info here. In the meantime, its omportant to take time for yourself, it is a shock when you are first diagnosed, but its not all bad, theres plenty of help out there. Keep us posted on how you're doing.


Ruth

 

[soupdragon69]

Hi Kev,

Sorry I wasnt very clear in my explanation. By ME I meant along the lines of Chronic Fatigue Syndrome dont ask me for the long version that means ME

You are right in that many seem to have been labelled as hypochondriacs etc. I lost my temper once in my GP surgery in Ireland (not my current one) and said that I was depressed because there was something PHYSICALLY wrong with me NOT showing physical symptoms because I was depressed! She got the message funnily enough. I really dont know what I would have done without my current GP surgery, they have stuck by me through thick and thin these past 3 years. I feel very lucky to have them.

Hi Ruth,

Its interesting about the irish connection with Coeliac isnt it? Apparently its moreso if you are from west/north ireland.

I guess diagnosing is a difficult thing when so many conditions/diseases have similar symptoms. I also am hard to diagnose because my blood tests are very elusive and seem to stay within normal limits unless I am really really sick. Its a bit like you think you have a cold til it develops over the next couple of days and you realise it is actually the flu eh?

The site and those that make it what it is has been a real gemstone for me. Yes the diagnosis can have a big impact and it will sneak up and get me every so often I guess still. But in the long run I know I can do much to help myself and will try. Its a pleasure to learn from such ones like yourself and those above and I look forward to continuing that.

Thank you both very much for your input and thoughts I value them and your welcome very much.

Jan

 

[soupdragon69]

Update on gastro today

Well I saw my cons and he said I definately have Crohn's today. He pushed the biopsies through because of the coming holiday he said and wanted to start treatment today with me.

I have posted on the diets thread as I am to commence an elemental diet tomorrow. I dont mind as all I want is some relief from all of this.

Its midnight here now so will disappear and try to sleep.

Hope everyone else is doing ok. Thank you so much for your support guys.

Jan

 

[Nancy Lee]

Hi Jan,

Thanks for the update. I'm sorry it's Crohn's, but, now your doc can get you on the right treatment, and, as you say, diet.

AND you will start to feel better!

Will you be starting any meds besides the diet?

Hugs~Nancy

 

[soupdragon69]

Hi Nancy Lee,

Sorry it took me so long to reply to you.

My gastro cons offered me three choices of treatment.

1. Long term antibiotics - Cipro

2. Budesonide for a minimum of 3mths

3. Elemental diet for 2-3 weeks then bland low fat low fibre for 2 weeks, then elimination diet.

I opted for the last as he reckons I am not absorbing my fat soluble vitamins or fats due to bile salt malabsorption probs. It meant I could try and get some nutrients on board faster.

I have done alot of antibiotics over the last 3years with my chest and they never made any difference to my gut.

I have also done alot of steroids too but am having bad probs with the side effects so much now that my asthma cons is desperate to keep me off them. Also taking budesonide means I would have to switch back and forth between it and prednisolone which is more systemic acting when my asthma nosedives. So too much mucking about for my liking.

The hospital I attend has been the leader in multicentre trials/research for Crohn's and are very big on dietary changes and intolerances too. They will use medication where needed and step up the ladder of treatment too but try very hard to reduce the volume of meds folk are on.

My consultant has said I may well relapse post diet but 80-90% of his patients go into remission then all they have to do is tweak things to keep it like that between diet and meds. He said the diet was the fastest way he knew of getting me into remission and boosting my nutrient intake. If I relapse so be it but I wanted to give the diet a chance as am so fed up taking meds between my skin and asthma alone.

Time will tell eh? I have been on the elemental diet a week yesterday and for the first time in years woke up without gut pain this morning. I have even been able to return to light exercise like walking and light weights too. My skin is smoother and the flare ups with it less angry and my chest/breathing has improved which is great as I knew I was on the nosedive again. My cons said now we know its crohn's he could tell me there is a big link between it and asthma/chest probs and that my skin would probably follow suit. My GP says my skin is like a barometer of my health rather than blood tests :ylol2:

I am just taking it one day at a time and am very intrigued by it all. We will see what happens over the coming weeks and months as I have waited this long for a diagnosis I can wait longer for some stability.

Hope you are doing ok.

Jan

 

[JUNE]

Hi all.. I am also new to all this. I have had a bad doctor. go see a new one in January. What is a elemental diet? I am willing to try anything till I can see new doctor.

JUNE

 

[soupdragon69]

Hi June,

Welcome to the site!

The elemental diet was suggested by my Gastro Consultant and is monitored by a dietitian in clinic.

It is basically a liquid form of nutrition broken down into easier digested elements so your gut doesnt have to work so hard to absorb and as a result allows your gut to rest a little and repair/heal inflammation etc. It also means you get the nutrients you may well be deficient in as it is mostly absorbed in the first metre of your small bowel just below your stomach. You only have that at set amounts a day in different flavours depending on your own taste and NO SOLID FOOD OF ANY DESCRIPTION. The general concenses seems to be 2-3weeks on it then a slow reintroduction of a foods that are less likely to irritate the gut - again done under medical and dietitian supervision.

As I have said it is closely monitored by qualified professionals and has to be prescribed by them so its not something you can just start.

It doesnt work for everyone and the chances of relapse are very real, however a high percentage do go into remission - the problem is keeping them there and it usually needs drugs to achieve it.

Why dont you create a thread as I and others have done and introduce yourself to everyone. You will find we will all listen and understand no matter what stage you are at. Feel free to ask any other questions and also to trawl the site as I am sure you have started to do.

I am only here a couple of weeks myself and the folks here have really helped me alot. Now its my turn to help someone else. WELCOME!!

Looking forward to seeing you around. I hope your new gastro cons improves your current status too. Some of the others on the site may be able to suggest options to tide you over in the meantime. Hope you feel better soon, am thinking of you.

Jan

 

[Nancy Lee]

Thanks for the info Jan!

Hi June!
Welcome to the forum!
Why don't you start a new thread here in Your Story and tell us a bit about yourself, how long you have had Crohn's etc.

You'll find a wealth of information here and also meet new friends who are in the same boat.

Welcoming hugs~Nancy

 

[JUNE]

Thanks for all the responds. I just found out in March or April. After never being sick a day in my life. This wonderfull storm Katrina came in. The stress was making me sick. So I thought. Then I got a bladder infection. Could not get it to go away. Then the ole runs came and would not go away. I stayed with runs from nov. 2005 till my scope in march 2006. The doc says you have crohns. And started me on Asacol. Still not much better he ran more test. ct scan. ct scan said i had cycst on overies .. lymp nods all in gut area. they say all from crohns.
I was going to suppose to be the best doc. on the coast. but he never seemed to listen to what I was telling him. I told him I think I have Hemorrriods i have blood and pus and it hurts bad when I use the bathroom. I can't sit or stand long.
Now I am all new to crohns and working. so I havn't had much time to research. This went on for 4 months. it just got worst and worst. Finally Thanksgiving I could not walk. and got on the internet and went to john hopkins web site. now remind you this doctor has examed me 6 times inbetween all this. I found pics of different things with crohns. I found a pic of the abscess and said thats what i have. I printed it out and took it to the gi doc. and he said oh yes. that is what you have and its all because u didn't do the remacade.. I was like I didn't think i was that sick. I thought I just had a very bad case of hemorriods. I never has them and since I was using the bathroom so much. why not... I had no clue what a abscess was. He was the doctor. By this time it was as big as a softball. I could not walk on my left get at all. all the lymp nods were infected. So had a drainage on dec. 4 2006. and god do I ever feel so good. I hope the hole never closes up. lol... I was in such pain for so long.
Going to see a new gi doc. in january.
so for now I am on asacol and entercort. so not sure what the new doc will do. All I know is I want remacade to be my last resort. don't like what I have read on it.

JUNE

 

[EBH]

HI Jan-
Sorry to hear about your recent diagnosis. But hopefully now that you have a diagnosis, you will find your way to better health soon.

Welcome to the Forum. You are in good hands with this group!

 

[soupdragon69]

Thanks EBH I appreciate your thoughts alot. Hope you are doing ok. I will get there. My father always says if theres a hard way to do something Jan will either find it or invent it! So am well used to taking the long way round

June,

Hope you start to get somewhere with your new gastro. They are a great bunch here. Hang in there.

Nancy,

Thanks for your support.

Hope everyone has a great new year.

Jan

 

[Crohnerdude]

Starting over...

After being diagnosed back in 1976 at the age of 19, I can remember how upset I was. Please know that you can have a great life. There are healthy people who are misrable. This is my first Chat.

 

[Nancy Lee]

Hello Crohnerdude and welcome!
If you like you can start a new thread under Your Story and tell us about yourself.
how you are doing now, and what has happened since your diagnosis.
Also what meds you are on if any.

Again, welcome, Nancy