I'm new - not sure whether this is the right place to post.

[chickpea]

Hi,

My name's Tracey, I'm 40 and was diagnosed with IBD 4 weeks ago.
During the colonoscopy, I was told it was Crohn's, but today I saw a different consultant who said it was more likely to be U.C (apparently, because I'm a non-smoker?)

I was put on 1.6g Asacol on diagnosis, which hasn't helped at all, so today I have prescribed 40mg Prednisolone and told to go back in 3 weeks.

I am really struggling at the moment.
It has taken me a long time to get to the point of diagnosis - I have spent a year being told it was all in my head, and longer than that being told it was all stress and I simply needed to learn to relax and eat more.

Last summer, I was put onto anti depressants - Citalopram - to deal with my "anxiety". The side effects were horrendous - truly, truly hellish.
Problem is that the anti d's are causing more diarrhoea, but now I've been told I need to stay on them until my gastro consultant gets me into remission.....catch 22, or what?

I am so physically and mentally tired, I can barely function.

I've lurked here ever since my diagnosis, in denial - but I need support from people who know how it feels.

Thanks.x

 

[Guest]

hi Tracey, welcome to the forum.

i'm going to move this thread to the Your Story section once i've posted, so that it's in the right place for our members to see you're a new member, and can come in and post to you.

a lot of us can commiserate with what you've been through, and are feeling right now. certainly i can - it took literally years, right through my teens, before finally someone found out i did indeed have a stomach issue - Crohn's Disease, and that it wasn't anorexia, umbilical colic, spastic colon, active imagination.. all these things i was diagnosed with and given medications for

the diarrhea can be stubborn to calm down - although i didn't have that, i had constipation - but i know from others it can go on for a long time before improvement is seen.

you have our support, and hopefully other members will have some advice for you. i'm glad you joined us, as i know what it's like to go through all this not knowing anyone else who's suffering from it.

by the way, are you keeping an eye on your hydration? with constant long-standing diarrhea you are likely to develop dehydration, affecting not only your fluid levels but your electrolytes too.. you can talk to your gp about this, or even a pharmacist, and there are preparations you can buy over the counter. some of the tiredness you feel could actually be due to dehydration, another sign is feeling headachey.

 

[Astra]

Hi Tracey
and welcome fellow Brit

I'm sorry you're having to deal with this, and you're not alone with a long dx, mine was 15 years! so I can really empathise with you, being told you're mental, neurotic, depressed, psycho, and all in your head, is no fun, and this is why you've probably been put on anti-d, like I was, hey, I've tried them all! uppers, downers, bennies etc, so know how you feel!
I really hope now that you can find the strength and determination to go back to your gastro and tell him that you're ready to be weaned off the mental drugs, cos now, you're not mental, you're a Crohnie.
Ok, now on to the Pred, this will work wonders for you in the short term, give you some energy, ease your pain, help you to eat better and reduce active inflammation. I started on 40mg for one month then started tapering down by 5mg per week, and it quite literally saved my life! It gave me some 'normality' back for a while, then I was able to go back to work after 4 months off. There are some dodgy side effects but if you bear in mind that these are a small price to pay, then you'll be ok.
Oh, and take your Pred very early in the morning, this will reduce any insomnia side effects you may have. And hopefully your gastro has given you some calcium supps to take, cos Pred can sap your calcium intake.
we're here to support you, you're no longer alone with this, any questions, just shoot!
lotsa luv
Joan xxx

 

[Crohn's 35]

Hi Chickpea, I was surprised of your mixed diagnosis.. you have UC because you dont smoke? That is a myth. I WAS a smoker and had Crohns and now that I quit I still have Crohns lol. That is a first I have heard for a switch of diagnosis. This disease is hard to diagnose and cope, I saw a counsellor when I was first dx long time ago. Turns out he was a big quack. I was in denial for many years until I had a second resection. I have been struggling to and depression is normal from time to time. Just know that you are true to you and learn all you can, lots of information and great people here, or just to vent. Ask away, we are listening.

 

[Dexky]

Hi Tracey, we were told EJ had UC at first but they later switched his dx to crohn's. He's 10, he better not be smoking. I wonder about your second consultant's credentials. You'll find some great advice on here. Good luck!!

 

[can1991]

Hi Tracey! Welcome I am also 40. I was just diagnosed last year with Crohns. There are lots of helpful, kind and caring people here!

 

[Regular Joe]

Hi Tracey,

It's a shame you have to struggle to convince the medical world that you're not imagining gastrointestinal problems. It's pretty amazing that has to be done. I have arthritis, had a lung tumor, kidney stones. Not once did anyone think "it was all in your head".

My first GI referred me to his nurse practitioner who thought I was drug seeking. The GI I have to day is the best. I couldn't have a better physician in the states.

I'm glad you joined us. Regardless of your diagnosis, you are in for a "roller coaster ride" when you attempt to come off the anti-depressants. When you reach that point, you will need to taper, perhaps up to 3 - 6 months. Not many physicians will admit to that, but their is a wonderful Brit who has devoted her life to psycho/neuro drug tapering. Her name is C. Heather Ashton, and her work is impeccable.

Although her site is devoted to "minor tranquilizer" withdrawal, Professor Ashton has done extensive work with SSRI anti-depressants - this is a link to SSRI info: http://www.benzo.org.uk/ssri.htm

Hang in, read up on everything that is giving you problems, and join us if yuo need support.

 

[chickpea]

Thank you so much for the warm welcome.

I'm sorry my post last night was brief and confused - I think yesterday was the first time I realised I'm stuck with this illness.

The biggest disappointment was seeing a different gastro.
My original one was great - blunt, to-the-point, but great. He was very firm that I had total Crohn's and we would go from there.

This one, who is part of the same team, looked at the images from the scope and said "well, it's hard to say but I don't agree it's Crohn's. I think it's much more likely to be UC, especially as you're a non-smoker, but we'll say it's indeterminate - we treat it all the same anyway."

I cried while trying to explain how frustrating it was to have had to struggle for a diagnosis, but he shrugged it off, saying there was no point looking backwards - we just had to look forwards.

I just want someone to acknowledge the misery I've been through for the last year or more.That's what my first gastro did - he said straight away "you do not loose weight from IBS, you do not pass blood from IBS". It was very obvious I should have been taken seriously from day 1.

I asked yesterday's gastro about diet, but he shrugged that off too. He said the only thing that *may* help was a dairy-free diet, but it would have to be VERY disciplined and he certainly couldn't manage it, if it were him.

I weigh less than 8 stone.I NEED to get some weight on.

Joe - thanks for the link. I am so angry that I am trapped in the anti d's cycle, simply because people thought I was nuts to imagine that there was something phyiscally wrong with me. Going onto the anti d's was a living nightmare, so I know exactly what lies ahead in getting off them.

Joan - no,my gastro didn't mention anything about calcium. I will certainly be buying some tablets - my mum has osteoperosis, so I need to watch this.

Dingbat - I hadn't thought about dehydration. I never drink enough anyway, so I need to get on top of it now. I have been feeling headachey.

Thanks guys for making me feel less alone.:smile:

 

[Guest]

hi again Tracey - ok, you're one of us now, whether it's UC or Crohn's - so don't ever feel alone with it any more.

this is a difficult point for me to make without it sounding wrong... the consultant you've just seen - to me it sounds like he doesn't really know much about Crohn's Disease. not only can he not identify the difference between that and UC, and from what you've said isn't bothering to take further steps to find out which one it is, his comment about diet is way off, in my opinion. i know i'm no doctor, i'm not medically trained, but i know enough to quite confidently say that diet can be a massive issue with a Crohn's sufferer, and i expect that goes for a colitis sufferer too.

it isn't just about dairy - that's only one aspect - if you have a sensitivity to dairy products then yes, continuing to ingest them will make you feel poorly and could keep symptoms happening. but - there are many other dietary issues which can be instrumental in causing symptoms and problems.... if you've had ulcerated areas in your bowel, you may now have a narrowing of that area due to scar tissue, and if so, eating high fibre, difficult to digest foods like vegetable & fruit skins, nuts, popcorn, mushrooms, raw vegetables etc, can result in a lot of pain, distention, and the potential to cause a blockage.

if you have poor absorption due to part of your intestines being diseased or scarred, you may need to increase vitamins, minerals etc.. and sometimes injections are necessary if you can't absorb enough naturally.

the point about calcium is very important, and you need Vit D with it to absorb it properly.

vitamin B12 is another issue with Crohn's sufferers, very often we have low B12 which in itself causes a whole range of symptoms... a lot of us have regular injections of this.

when going through a Crohn's flare, altering our diet is instrumental in alleviating a lot of the pain and discomfort.. at these times many people turn to liquid or low residue foods only, until the flare has passed, then introduce more solid foods in gently.

there's so much information your consultant should have armed you with, instead of a shrug & "it might be this, it might be that....."

my advice to you is to try and ensure you see the other consultant in future, the one you trusted and were comfortable with. in the meantime, you can ask your gp to get some blood tests done, looking at your vitamin levels, particularly B12, iron, Vit D, electrolytes & calcium, & take it from there when the results come back.

 

[merrywidow]

hi, have you asked for different anti depressants? you need all your strength to cope with crohns. we are hear if you need us.

 

[chickpea]

hi again Tracey - ok, you're one of us now, whether it's UC or Crohn's - so don't ever feel alone with it any more.

this is a difficult point for me to make without it sounding wrong... the consultant you've just seen - to me it sounds like he doesn't really know much about Crohn's Disease. not only can he not identify the difference between that and UC, and from what you've said isn't bothering to take further steps to find out which one it is, his comment about diet is way off, in my opinion. i know i'm no doctor, i'm not medically trained, but i know enough to quite confidently say that diet can be a massive issue with a Crohn's sufferer, and i expect that goes for a colitis sufferer too.

it isn't just about dairy - that's only one aspect - if you have a sensitivity to dairy products then yes, continuing to ingest them will make you feel poorly and could keep symptoms happening. but - there are many other dietary issues which can be instrumental in causing symptoms and problems.... if you've had ulcerated areas in your bowel, you may now have a narrowing of that area due to scar tissue, and if so, eating high fibre, difficult to digest foods like vegetable & fruit skins, nuts, popcorn, mushrooms, raw vegetables etc, can result in a lot of pain, distention, and the potential to cause a blockage.

if you have poor absorption due to part of your intestines being diseased or scarred, you may need to increase vitamins, minerals etc.. and sometimes injections are necessary if you can't absorb enough naturally.

the point about calcium is very important, and you need Vit D with it to absorb it properly.

vitamin B12 is another issue with Crohn's sufferers, very often we have low B12 which in itself causes a whole range of symptoms... a lot of us have regular injections of this.

when going through a Crohn's flare, altering our diet is instrumental in alleviating a lot of the pain and discomfort.. at these times many people turn to liquid or low residue foods only, until the flare has passed, then introduce more solid foods in gently.

there's so much information your consultant should have armed you with, instead of a shrug & "it might be this, it might be that....."

my advice to you is to try and ensure you see the other consultant in future, the one you trusted and were comfortable with. in the meantime, you can ask your gp to get some blood tests done, looking at your vitamin levels, particularly B12, iron, Vit D, electrolytes & calcium, & take it from there when the results come back.

Thank you, thank you, THANK YOU!
All of the above is what I had *some* idea of, having browsed the net for info. Plus, the very last thing my first gastro said to me was "diet plays a part, and you will quickly find what causes you problems".
Once again, I came away from yesterday's appointment , feeling as though I wasn't being listened to.

I feel in limbo - I know that certain things exacccerbate my issues (eg sweet corn, milk, wheat, red meat, fizzy drinks, mushrooms, tomatoes etc), but I have no idea what to eat instead. I wanted to ask about seeing a nutriotionist, but chickened out after the diet conversation.

No-one has mentioned supplements. I am taking a Vit B complex and some fish oils, plus general probiotics, just to feel as though I am doing something to help myself.

I am a very holistic person by nature - I don't "do" medicines unless I can help it, even for a headache, and I know that treating the syptoms is only half the story.

It's all so frustrating. I want to feel empowered and in some control over my own wellbeing - not just force-fed tablets and dripped information from the consulatants on a need-to-know basis.