My story so far .....

[macdonald88]

Hi my name is Rachel I'm 23 and have been off work since september last year firstly experiencing fatigue, dizzyness, sickness i could hardly lift my head off the desk at work. The Doctor told me initially '"grow out of it" i was fuming with this statement. I have always had mucous as far back as 2008 i can remember but had no clue what it was and being 19 i just thought it was normal so one the excessive bleeding started last december i was getting quite concernes. So as alot of you i had had every test, scope and mri scan going and was initially diagnosed in feb this year with ulcerative colitis but underwent further tests and in march i was diagnosed with crohns i was conintuelly getting worse and the pain was out of control no amount of meds were helping and was admitted to hospital twice before my op in may.

so in may i had 11cm of my ileum removed and resectioned as soon as i came round from my op i felt a huge weight had been lifted off my shoulders and the pain was gone (apart from the post op pain) 2 weeks went by following my discharge from hospital and i was back in again for 3 days i was diagnosed with cdiff and had the worst time ever with it, my sypmtoms lasted 8 weeks and it was just controlling my life as i was able to control my bm's more prior to the op with the cdiff i just couldnt leave the house. I don't think i have really taken it all in as it all still feels very sureal to me as it has all happened so quickly.

I have hit a few low points and get into ruts of being depressed, i am trying to stay positive but just keep thinking i will never get better.So a few weeks on now and i had just started the modulen ibd diet as im still constantlly feeling very weak and have no energy (persumably due to the part of my bowel which normally absorbs your nutrients etc) i am on day 4 and i am doing really well i have noticed a huge difference in my energy levels and i finally feel like the real me is coming back the first day of taking the supplement it reduced my bm down to 1 and not to be too raphic but it was solid but the last couple of days once im finshed the drink my bowels have been very explosive but only after drinking it. I have been drinking it slowly over an hour but we will see how it goes.

It has been such a hard time but i wouldn'tof been able to do it without the constant support from my friends and my family.

I'm seeing my specialist next week so i'm sure he will be happy to hear i am finally on the right path.

So just wanted to give a wee bit of my story as reading everyone elses has helped me alot.

Thanks for reading

Rachel

 

[glum chump]

Hi Rachel and welcome to the forum!

You've had quite the time with this illness! CDiff is such a bugger---I have had two bouts of it, and I remember thinking in the midst of it all that I wouldn't wish this on my worst enemy. It's hard *not* to get depressed with illness, especially when it controls and takes over your life.

I'm so glad the new diet worked so well for you. Are you on any medications or supplements at the moment?

I hope your train of recovery lasts you a long long time!

Best wishes,

Kismet

 

[macdonald88]

Thanks yeh the cdiff was terrible i never want to experience it again i feel for you having it twice now.

It is really hard to stay posative when you are in so much pain and see no end to it but the diet has really lifted my mood

I am currently just on 100mg of azathiaprine and 3 monthly vit b12 injections, i was previously on prednisalone, budesonide, pentassa and a long long list of pain meds that didn't work!! Fingers crossed that the diet helps i am really pleased with myself that i am managing to carry on with it as the first day it was just so sickly but i've adapted to it now. I'm hoping to maybe get back to work in the next month for 2hours a day gradually increasing back up to full time.

Thanks you your kind words

 

[scottmyster]

HI Rachel, and welcome to the forum. i have had crohn's for 21 years now and was in remission for 15 years so diet do help and taking the right medication. mine flared up a month ago and i am still battling it. but, it seems to be clearing up now thank god. i hope you do good on your azathiaprine and success with your diet. best wishes. :rosette2:

scott

 

[macdonald88]

HI Rachel, and welcome to the forum. i have had crohn's for 21 years now and was in remission for 15 years so diet do help and taking the right medication. mine flared up a month ago and i am still battling it. but, it seems to be clearing up now thank god. i hope you do good on your azathiaprine and success with your diet. best wishes. :rosette2:

scott

Hi Scott i'm glad to hear you were able to maintain remission for 15 years that excellent, hopefully you get through this flare it quickly and continue to maintain your remission. I am very good at taking my tablets and never forget them i just hope the diet helps i do feel i am going in the right direction now. Take care :ybiggrin:

 

[xJillx]

Hi Rachel and welcome! Wow, it sure sounds like the modulen is doing wonders for you. How many weeks are you sticking with it? I sure hope you continue to do better and better each day. Keep us posted!

 

[macdonald88]

Hi Jil i'm on day 6 only doing it for 4 weeks see how i get on as i am going away to relax for a week and wanted to start introducing food so i could eat something whilst i was away. It's going so well my mucous has reduced yesterday so i'm really happy that it looks like the modulen is doing what it should. I'm obsessing over thinking about food today with all the smells going on in my house but i will do this!

 

[mallenfaye]

Hi Rachel, I notice you live in Morayshire!!! So do I! Glad to hear your doing well on this diet. Can I ask who your consultant is? If its the same as mine I may well ask him about this diet.
I am slowly getting there but feel I need something to boost me for energy etc!

Look forward to hearing from you.

F x

 

[macdonald88]

Hi Rachel, I notice you live in Morayshire!!! So do I! Glad to hear your doing well on this diet. Can I ask who your consultant is? If its the same as mine I may well ask him about this diet.
I am slowly getting there but feel I need something to boost me for energy etc!

Look forward to hearing from you.

F x

Hi Mallenfaye, my consultant it Dr Williams at Dr Grays Hospital. I was referred to the dietician and she was brilliant. I was the same with my energy its always been a problem but 2 months after my op i wasnt gaining any energy and was still bleeding alot etc so he initially said to have a really bland diet then i got the referral. Are you in the middle of a flare just now? How long have you had crohns for? I hope your doing okay and maybe you would benefit from it. I felt straight away the boost of energy it was unreal i feel like i am slowly getting back to me but today i am really hungry lo and feeling quite lightheaded. I have read that some people can have clear liquids like soup etc whilst on it but i was just advised water/squash so i think when i see my consultant on thursday i will ask about that cause i think that would kinda take the emotional side of it away a bit because not being able to eat although you are getting nutrients etc in liquid form. x

 

[mallenfaye]

Hey,

Snap, good old Dr Williams. I was taken into Grays in February and after several scans and scopes was diagnosed with Crohns.
I am currently still on steroids but slowly weaning from them, started on budesonide swapped to prednisolone and now back onto the budesonide. He has me on 150mg of azathioprine and I think things are slowly improving. I just still get pain after eating . He has me on a really bland diet, which is hard to stick to when you know other foods will give you more energy etc. I will ask him about seeing the dietician when I see him on the 8th sept. I cant wait to get off the steroids if I am honest because they have me puffed up like a balloon and make me hungry which is torture when I cant eat much that doesnt make me ill.

How are you getting on with the azathioprine? I dont really have any side effects, that I am aware of, but my joints ache a bit?!?

F x

 

[macdonald88]

Hi Rachel, I notice you live in Morayshire!!! So do I! Glad to hear your doing well on this diet. Can I ask who your consultant is? If its the same as mine I may well ask him about this diet.
I am slowly getting there but feel I need something to boost me for energy etc!

Look forward to hearing from you.

F x

Hi Mallenfaye, my consultant it Dr Williams at Dr Grays Hospital. I was referred to the dietician and she was brilliant. I was the same with my energy its always been a problem but 2 months after my op i wasnt gaining any energy and was still bleeding alot etc so he initially said to have a really bland diet then i got the referral. Are you in the middle of a flare just now? How long have you had crohns for? I hope your doing okay and maybe you would benefit from it. I felt straight away the boost of energy it was unreal i feel like i am slowly getting back to me but today i am really hungry lo and feeling quite lightheaded. I have read that some people can have clear liquids like soup etc whilst on it but i was just advised water/squash so i think when i see my consultant on thursday i will ask about that cause i think that would kinda take the emotional side of it away a bit because not being able to eat although you are getting nutrients etc in liquid form. x

 

[macdonald88]

I was the same started getting probs with bleeding in december last year then in jan i had a sigmoidoscopy where they initially thought it was ulcerative colitis then feb i had the colonoscopy, march ct scan (diagnosed), april admitted to hospital for a week as it was just getting so worse, may i had my mri scan and had my op 10days later, june admitted again as i had cdiff, july colonoscopy and so far in august i have only been to a & e for possible wound infection lol. Dr Williams is brilliant isn't he, he really goes out of his was and has even called me at home at 9pm at night, i think that is a truely dedicated doctor. I was on both steriods at some point since march and wow they blow you up don't they, my face was like a big puff ball! It is coming down now and i have been off them since may so there is hope for you believe me lol!

I am on 100mg azathiaprine daily but im not sure if they are doing anything for me, how do you tell? You seem to be on a higher doze and the steriods at the same time so i imagine that would help bring the inflamation down. I did have a bit of joint pain previously but with everything that you go through i wasn't sure what the cause of it was.

I also spoke to my gp about getting a referral to the dietician and he had no probs doing it just happened that i was in hosp for further investigation in july that i spoke to the nurse there who did it and the appointment came in 2 weeks later.

I feel like the doctors have been my 2nd home this last year as i would have atleast 3 appts a week. How often do you get your bloods taken for your azathiaprine? I have never gotten off the weekly bloods since march and my liver function was sky high a wee bit back but this last month only had them twice waiting to see what Dr Williams says on thursday.

Are you working at the moment?
xx

 

[mallenfaye]

I really rate Dr W. My pal has Collitis and she has him too. Think we are lucky. He always goes out of his way and is so sympathetic. I have had to phone him a few times and he sees you the same day. I try to avoid hospital stays as I really dont like ward 5 however I was lucky enough to get a private room because i was so sick!

Puffed up is an understatement, I feel like that girl out of Charlie and the chocolate factory that turns into the blueberry! Hopefully I can come off them at my next appointment. Dr W still thinks I have some inflammation so he is "blasting" it with the steroids, plus he said he likes to keep people on the steroids whilst they start the aza as it can take up to 6 weeks to have any effect. The way I have felt that aza is working is because all my symptoms are getting slowly better, not constantly running to the toilet, (sorry for graphic detail here but also my bowel movements are more solid) not as much mucous either. I still unfortunatley have nausea but not as much. The pain is not constant anymore just after I have eaten, well about 40 mins which Dr W thinks is when its trying to pass through my ileum (which is my worst affected area). I started off on 100mg per day and he upped it after a month. Think 150mg is the highest you can have but dont quote me?!?!

I have my bloods done monthly now, was every 2 weeks to start with. My liver seems to be coping well with it and no other markers are causing concern. I never seem to be affected my drugs in a bad way, must have good tolerance levels. Just wish I could of been immune to getting "fat" from steroids.

I am a bit depressed with it all, well more fed up to be honest. My life consists of docs appointments and feeling sick all the time and popping pills! Oh and then there is the violation feeling I have that all my docs have seen bits of me that they shouldnt of.

Who is your GP? I have a good relationship with mine and he is great! (Dr Stewart at Maryhill!)

Yes I am working, have had a lot of time off but I have a great boss who understands when I have to go I have to go.

xx

 

[macdonald88]

Hehe thats exactlly who i thought of when i was all puffed up my pal kept refering to me as violet lol! I know what you mean tho i put on over a stone but have lost all that excess weight now, but trying to concentrate on an actually diet is hard when you are feeling weak and end up eating the wrong things just to give you energy. It is horrible though and its such a struggle especially when you dont know anyone who has it and you have no one to discuss it with. My family have been brilliant but obviously can only sympathise. I have struggle alot over the last couple months with the depression side of it all and especially before the op i just couldnt stop thinking why me? am i ever going to be able to do anything in life. I've not had any meds and the drs say it is very understandable to feel this way as we are going through so much emotional issues with it. Chin up, i know its easier said than done but their is hope.

Glad your feeling your imflammation is coming down, mine just kept getting worse so no of my symptoms were reducing. Once the pathology results came back i was told no amount of medication would of helped me just what dr williams said so i am glad that they did the op when they did.

I know your life just revolves around all these different appointments and the girls at the surgeries all know me quite well know. Its helps to have a good relationship with your doctor and sticking to the same one. I'm still at the lossie practice as i never changed when i moved to elgin and i have 2 great doctors

How have you been coping when you have actually been at work? i went back in jan for a graded 6 week returned but it didnt go to well and have been off since then. I am hoping to go back in a month or so but im really worried how i will cope with the toilet facilities ect and obviously i am still quite weak x

 

[mallenfaye]

I too have resisted the option to go onto some form of anti depressant. My sister has been great, she works up in Grays so usually meets me for appointments as sometimes I go into a daze when they try and tell me too much. I have plenty of distractions to keep my mind off of it all but my hobbies have had to take a back seat just now as I dont have the energy for them as much.

Do you feel better for the op? Dr W is still contemplating operating as he thinks some of my pain may now been from scar tissue that the inflammation left behind, I seem to get to a low dose of the steroids and then pain gets worse so he has to bump it back up?!?! Such a horrid disease isnt it??

Work tires me out lots, when I first came back after being in hospital and diagnosed I worked part time which helped. I cant do much during the week after work as I just sleep on the sofa in front of the telly but I am glad to be back as it takes my mind of it.
I am lucky that I work in a small office, only 4 of us. They all know about my illness so they always make sure 1 of the 2 toilets is always left free. We tend to make a joke of it here now as its better to laugh than cry. I did have one very embarassing moments at work once, but they were all great.

Where is it you work?

xx

 

[macdonald88]

Yeh im reluctant to take them aswell i don't want to add anything else to my list. Thats good your sis works in the hospital very handy for all those appointment. I can never remember anything either so always take my mum.

Definately as soon as i came round from the op the pain was gone instantly (apart from post op pain) and i felt such a relief. The sickness and dizzyness went but came back 6 weeks later and is no lingering there but the modulen is helping. I'm still having alot of probs with bowel movements, blood and mucous but it will settle down in time. I am still quite weak physically from the op but have been gradually building up my strength. With the cdiff and all the minor probs after the op i still feel better than i did post op. It was the ileum they resectioned aswell (noticed your prob is in your ileum) if you have the opertunity to go for op, you obviously have to think hard about it but with me it was a no brainer and i am thankful they got a cancellation as i dont think i could of lasted a few weeks more, not even the morphine was helping with my pain

Thats good that your working is really understanding, i work with the council they all know whats wrong with me but i dont think anyone understands what the disease is.

It is horrible, when i was getting all my tests done everyone around me kept saying o well atleast its not crohns and when i got diagnosed it was like a ton of bricks was put on my shoulders, i think im still in denial xx

 

[mallenfaye]

At times I am in denial but my sister soon puts me in my place.

Its a horrible illness to have. Me and my pal (who has colitis) just joke together about our "diseased guts" and that really helps me. I am always here for you (on the internet and in person) if you need someone who has the same illness as you!? And I genuinely mean that. It is great have supportive "healthy" friends and family but no one quite knows how it really feels like another crohnie!!

As for your work, nows the time to educate them. Go and google the NACC (national association for crohns and colitis uk). You can join for £12 and they send you a heap of educational leaflets about your condition which you could give to your work. Of if you want mine you can have them, think I have read them that much that I know them word for word. They also give you a "Cant Wait" card which I have found to be very useful at times when you need to use a toilet and there is a queue! Saves any more embarrassing moments!

I have already decided that if Williams says an op will help I am going to go for it, I trust him with my life so to speak so I trust he wont do it unless its necessary. Which surgeon did you get? xx

 

[macdonald88]

Thanks its good to have someone who understands what you are going through. Bowels are the topic of conversation in our house lol nothing is untouched now! I have had a look at the NACC website previously but never signed up i think i will and it would be good to have the cant wait card, i bet thats a life saver. Thanks for offering your leaflets but i will decline i know you can never get tired of reading them lol i have a really good book on crohns will have to look at the name of it and it details everything and has a few reipes that are good for everyones dietary needs. My mum is the same she tells me to snap out of it but at times it is really hard as you just feel so alone and dont know what to do.

I think if you are in so much pain then yeh the op is the best way. I was in ward 5 tho!! It was Mr Gunn who did my op he is meant to be one of the best and my scar is so neat. I actually went into a & e one night and the doctor that was treating me took one look at the wound and said was that Dr Gunn, how weird is that. xx

 

[mallenfaye]

Your welcome! And feel free to have a moan at me if needs be.

Your right though, nothing is untouched now in my little circle, I did find it great though when my pal got diagnosed as I know longer felt alone. This disease can be very lonely and isolated at times. I remeber another friend who once had a colonoscopy done and he pre warned me about the PICOLAX, have to admit I was very grateful that he was so honest!

I have orded a crohns cookbook off the internet too so wonder what that will have in it.

The cant wait card is a life saver however if you ever try to use it in the granary they can be quite arsey, thats another story I will save for another time.

Everyone has told me that if I have to have the op then I should hope I get Mr Gunn! Apparently he is brilliant. When I was in hospital I had Dr Hew interested in my case but people said Williams was the best so I was delighted when he kept me on his case list!

Right I am off home now for a big snooze!

Speak to you soon and take care! xx

 

[macdonald88]

O the picolax was horrible! Yeh I was under Dr Hew firstly but at one point i was really ill my Dr called the hospital but he was on leave for a month and Dr Williams has taken over since then so i am thankful, Dr Hew was lovely dont get me wong but Williams is brilliant.

Sounds like a plan, i'm away for a bath whilst my husband has his tea, i'm trying to avoid the yummy smells!

Speak soon and i hope your feeling better soon xx