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Crohns in the UK, what to expect?

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Crohn's Disease
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Posted 7/10/2009 3:24 PM (GMT 0)
I was diagnosed with Crohn's a couple of days ago, and since then have been reading pretty much everything I can find on the internet about it. My doctor gave me *NO* details at all about my condition. No leaflets or advice or anything, just said I have Crohn's, gave me a prescription and said bye.

I was diagnosed by a barium follow through which has shown extensive swelling and knotting of my small intestines. The radiologist suggested Crohn's in his report, and my doctor simply said "he's experienced and probably right". I've got a colonoscopy scheduled for next week. I've been in constant pain for the last 6 months, with D and occasional bouts of very painful cramping. I feel sick all the time, though haven't actually vomited at all.

So what can I expect? Are there follow up appointments, do I see my normal GP, or will I be going to a hospital outpatient clinic? How long do I need to wait before I know if the medication is working or not? I'm on 4g of Pentasa a day, in sachet form. I pour these little granules onto my tongue and swallow them with water or orange juice (as directed in the drug information leaflet). I noticed today however that the granules are coming out the other end.. shouldn't they dissolve?
Posted 7/10/2009 3:39 PM (GMT 0)
Hi Stasi,

And welcome to Healingwell. You will find alot of wonderful and supportive folks here all trying to live with this darn disease.

You will need to be followed by a Gastroenterologist, there are the doctors that treat Crohns. Some of our meds can take awhile to kick in (3 mos). They have started you on Pentasa, which is a usual beginning place to start. I currently am maintained solely on the sister med Asacol. With the Pentasa it is very normal to see the beads in your stool, so don't worry about that.

I suspect after the colonoscopy you will get more answers and more than likely more medications. If they find inflammation they usually will start you on a steroid to tamp down the inflammation. With this disease you will have alot of doctors appts, as the disease flares and goes into remission.

You will need to modify your diet. Diet seems to be pretty individual for all of us, so its recommended you keep a food diary of what foods upset your system and those that agree. I personally live on a low residue diet. Its easy to chew, easy to digest. Others on the forum have found success with either the SCD or Maker's Diet. We basically have to find what works best for our individual dietary needs.

Again welcome to Healingwell. Ask all the questions you want, we all understand what you are going thru and all will be glad to help.

Hugs
Gail *Nanners*
Posted 7/10/2009 3:46 PM (GMT 0)
In the States we have "GIs" (gastroenterologists) which are specialists. Perhaps your GP will refer you to a similar specialist in the UK.

It is great that you are reading everything you can get your hands on. Nobody really knows what causes Crohn's, and different things work for different people, so you will need to listen to your own body and actively manage your condition.

Don't know about the dissolving, so perhaps somebody else can help. But the dosage of Pentasa is correct - you are taking 1 gram four times a day, right? 

The following web site at Johns Hopkins Hospital in the States provides excellent info including pics about the condition and treatment options: 

http://www.hopkins-gi.org/GDL_Disease.aspx?SS=&CurrentUDV=31&GDL_DC_id=D03119D7-57A3-4890-A717-CF1E7426C8BA&GDL_Disease_id=291F2209-F8A9-4011-8094-11EC9BF3100E

The following book is great for people recently diagnosed: 

The First Year: Crohn's Disease and Ulcerative Colitis: An Essential Guide for the Newly Diagnosed  
 by: Jill Sklar,  publisher: Da Capo Press

Posted 7/10/2009 3:48 PM (GMT 0)
I've read alot about diets and food diaries, though for all the time I've had symptoms they've been pretty constant. I can eat spicy/fried foods just as well as everything else, and have never seen any kind of correlation with pain. I just have a constant ache all the time. My first stomach cramps were after eating vegetable stir fry, my second after a roast chicken dinner, my third set after an afternoon ice cream... these appear to have very little in common to me.

I've read about this SCDiet, but I'm not sure what to do about anything just yet. I guess cutting down to some kind of minimal diet and seeing if that helps could be a good place to start. I just don't have the energy for anything, so the thought of following a labour intensive diet is daunting.

My partner has been wonderful looking after me since all this started, I dont want to have to ask him to cook me awkward foods now too, or change his diet to fit mine.
Posted 7/10/2009 3:50 PM (GMT 0)
You can also check the www.ccfa.org website, which talks about diet, vitamin supplementation, and other issues. I just now tried to access it, but couldn't, so the site might be having problems right now - but in an hour or so, perhaps it will be OK.

 

Posted 7/10/2009 7:24 PM (GMT 0)
Hi Stasi

I have limited dealings so far with the UK system but you will definitely fall under the care of a Gastroenterologist - I bet they're really waiting for a proper diagnosis after a colonoscopy. If it was the GP who gave you the diagnosis and prescription they will have only been doing it on the advice of the hospital people as an interim measure.

the National Association Crohn's and Colitis (NACC) has a website - www.nacc.org.uk which has lots of info and a helpline and possibly a group near you. I've found a lot of my info through the internet and this forum helps - although sometimes it's hard to compare exact situations, and we don't have the same choices as to who we can see or what information we are given (even about ourselves).

As for diet - it's a fact of life that you will become more aware of what you can tolerate - speaking as someone who used to think nothing of eating curries, fish & chips, drinking beer etc there are times when the 'sensible' thing is best: I'm even eating fruit now!!. The things you said didn't have anything in common.........I would have problems with all of them because of fat content to some extent.

There are a few of us from the UK using this forum so you'll no doubt hear from others. Best wishes

Penny

Posted 7/10/2009 9:16 PM (GMT 0)
Hi Stasi

Im sorry to hear you may have crohns. I rarely see my local GP regarding my crohns.  I see a gastroentologist at my local hospital. I too was diagnosed by a colonoscopy, once you have had that and see the specialist you will be sure to start on a proper course of treatment.

Good Luck

Posted 7/10/2009 9:18 PM (GMT 0)
Oh and I am in the UK, and have had crohns and various treatments over the past 4 years so please feel free to ask any questions

Posted 7/10/2009 10:50 PM (GMT 0)
Don't worry about the granules coming out the other end. It happens to lots of us, and my doctor says it's normal :-)
Posted 7/13/2009 12:12 PM (GMT 0)
Well I'm doing the prep for my colonoscopy today... not fun. I've two sachets of Picolax to take, did the first but it made me feel really sick. Tasted ok and everything, just made my stomach feel weird and delicate.

Took over an hour to start working, and now I'm back and forth to the bathroom about every 10 mins. It feels like I'm passing acid though, is that normal? Is there anything I can do to stop it being so painful? Luckily I've not had any cramping or anything as I've read other people do.

I'm worried about the colonoscopy tomorrow. I know I shouldnt really, but it's hard not to. I'm kind of hoping they wont find anything, but I'm also not sure if that would be a good thing. Is it better to have a diagnosis or not? I'm hoping that all of this is just a reaction to the iron tablets I was taking - is that silly? I didnt have any symptoms till they started treating me for anaemia... I've had to stop the tablets for the colonoscopy and things have been better - but I'm also taking the Pentasa, so maybe that's working.

Oh well, tomorrow will tell I guess.
Posted 7/13/2009 5:34 PM (GMT 0)

I think it is better to know what you have so that you can be guven the correct treatment. I hope that you dont have crohns but if you do then it is the start of your treatment and moving forward.

Good luck 2moro

Posted 7/15/2009 7:57 AM (GMT 0)
I had my colonoscopy yesterday. The nurses and everything waswonderful, but the procedure was awful. I had low blood pressure going in, so I think they were careful with the sedation (which lowers blood pressure more) and only gave me a little. I was wide awake through it, and it was not easy.

I guess I have one of those twisty bowels people hope they don't have. The start of the procedure went ok, but then they reached a spot they just couldn't get past. Took alot of poking and prodding, and a nurse leaning on my stomach to get it through. Highly uncomfortable!! In case other people read this and worry though, it wasn't actually painful, just very, very, very weird and uncomfortable. There are no nerves to make it painful luckily.

Well, the doctor asked them to look into my illiuem (sp?) as that's where the barium follow through showed swelling. However, they couldn't get that far. They found "very diseased" bowel at "ascending and caecum" according to my notes. It was too bad to push past, so they took a tonne of biopsies and withdrew.

The colonoscopist said that, usually with bowel that diseased "they'll want to do something about it", and reccommended my follow up with the surgical clinic. No-one has mentioned surgery yet, but I'm worrying already.


I'm using this forum like a pen pal.. but I dont have anyone to talk to about this. I'm being "the strong one" for my family and boyfriend, reassuring them that everything will be ok. I'd like someone to be telling me that.
Posted 7/15/2009 11:00 AM (GMT 0)

Hi Stasi

Sorry you've had to join us here but you've come to the right place - you'll find so much support and information on this site.  I wish I'd known about it when I was diagnosed!

I live in London and echo what the others have said, it's likely that you'll start to be seen at your local hospital clinic under the care of a gastroenterologist.  I only tend to go to my GP to get my prescriptions these days, everything else goes through the gastro doctors who are much more specialised and knowledgeable.

I also have a very twisty bowel and find colonscopies very uncomfortable.  They just tend to knock me out for them now as they're too painful otherwise.

Sorry to hear you might be facing surgery already but don't worry until you actually get to speak to the surgeon.  They really discourage operating unless it's absolutely necessary and your quality of life is untenable.  I've had surgery and it was awful but I got through it and so will you if you have to.  It's amazing what becomes normal!

In terms of diet, again I echo what the others have said, you just have to find out what's right for you.

Let me know if there is any other advice or help I can give you. 

Posted 7/15/2009 11:02 AM (GMT 0)
Oh and definitely check out the NACC website - they have loads of useful information.  I think they also have a helpline if you want to talk to someone, I've never used it though.

Posted 7/15/2009 1:23 PM (GMT 0)
I feel like a ticking timebomb now :(

I mostly don't think surgery is needed, my symptoms really haven't been that bad. If I'm sitting down then I'm generally fine. Uncomfortable and a little sore, but nothing I've ever thought about taking pain medication for. When it gets bad I *hate* standing up though, it feels like someone is standing on my stomach, and all I want to do is curl up. Horrible feelings and nausea, but again, still no significant pain. I've never had a blockage or anything to go to the ER about, a couple of cramping sessions, but not significant.

The person doing my colonoscopy called in a collegue for a consult, and seemed pretty serious about what she was seeing. I'm no expert, but I assume they knew what they were seeing.

I think I'm going to stay on the cautious side, try and find out if there are any alternatives. Surely surgery is premature only after a week of medication with Pentasa?

Thanks for listening.
Posted 7/15/2009 1:32 PM (GMT 0)
It depends on what the diseased section consisted of. Was it really bad inflammation, if so, you can heal that with medications. Now if it is scar tissue, then no medications will heal that. I know its easier said than done, but try not to over think this too much until you can see your doctor. You maybe put on stronger meds to get the inflammation back into check. Good luck!
Posted 7/17/2009 11:03 AM (GMT 0)
I've been talking to friends and family, and I think I'm going to wait and see what the doctor says, but not be too easily swayed towards surgery.

My symptoms only started about 7 months ago, just before Christmas and in a particularly stressful and hectic time. Given that, I don't think it's likely there's extensive scarring, and I would guess it's just bad inflammation and ulceration.

I've been looking into diets, and am considering the low res diet for a while, at least until I get to see a doctor who has time to talk to me. My mum has been doing alot of reading to, and is very keen for me to go on the enteral or modulen diets. She's hoping I'll go on it for a couple of weeks and be cured for the next few years... I don't feel as optimistic as her, but I won't sulk if she's right.

For people in the UK - what probiotics do you take? I'm trying Multibionta and Actimel drinks, but I think these are maybe a bit tame for Crohn's.
Posted 7/17/2009 12:26 PM (GMT 0)
I couldn't work out what I should be taking either, couldn't stomac yakult so settled on acidophillus tablets. (from Holland and Barratt)
I'm on a low residue diet, I'm not sure if it's that or the prenisolone (probably a combination of the two), but things have definately slowed down.
I was diagnosed formally in March, it can feel like a complete whirlwind, do your research and have a good chat with a GI doc, they generally have very different opinions to the surgeons. (The GIs are the experts). Good luck.
Posted 7/17/2009 1:20 PM (GMT 0)
I *SWEAR* I remember reading someone somewhere asking about a dietician in the UK and how to find one, however searching through all the recent threads I can't find it anywhere. So I thought I'd add the info I've found to the end of this thread, on the off chance they'll read it.

http://www.bda.uk.com/

Finding a Dietitian
Most people will be able to see a Registered Dietitian within the NHS after being referred by an NHS GP, doctor, health visitor or other medical staff. You can also self-refer. Consultations with dietitians within the NHS are free.

Alternatively if you wish to see a Registered Dietitian who practises privately, you can search on-line for a dietitian near you at Dietitians Unlimited, which is run by the BDA's Freelance Dietitian Group.

http://www.dietitiansunlimited.co.uk/
Posted 7/17/2009 3:05 PM (GMT 0)
My GI has referred me to an IBD specialist dietician, waiting or the appointment to come through, which will take a long time as they are one of the most over subscribed services in the NHS. But yep, any doc can refer you.
Stasi where do you live, roughly?
Posted 7/17/2009 3:13 PM (GMT 0)
I'm in Edinburgh, getting treatment through the Royal Infirmary.
Posted 7/17/2009 3:15 PM (GMT 0)
I'm not sure if the Scottish NHS work differently, but from what I've heard that's a fab hospital.
Have they sorted you with a Gi medic or are you still under the surgeons?
Posted 7/17/2009 3:22 PM (GMT 0)
The NHS choices website, has a Crohns section in the health A-Z, it basically outlines the guidlines that the NHS doctors are/should be following, should give you an idea of what they will do next and what your options are.
Posted 7/17/2009 4:01 PM (GMT 0)
My treatment at the RIE started with me going to the A&E because I was forced to by my parents. I'd been waiting 3 months for a referral to a specialist and still hadn't received an appointment.

In the A&E I saw "the big boss" as he was referred to by the other doctors, who kind of took me under his wing and made sure I got a follow up appointment with him, and also sent me for an endoscopy. At the follow-up he decided my problem was medical, and he was a surgical specialist, so he got me a referral to medical, and sent me for a barium follow through.

The medical team I saw were less than good, though it was probably just bad luck with the doctor. He saw me for maximum of 5 minutes, read my barium results, prescribed me pentasa, said I had chron's and sent me for a colonoscopy...

That's the full extent of my interactions with doctors so far, and the reason I started this thread. I *hope* I'll be put under the care of a single doctor who I see for regular check-ups. I don't really want to follow the clinic system where you just get called in by one of a number of doctors on duty that day.

I think I'll be seeing a surgical clinic sometime in the next few weeks, whenever my appointment comes through. I'm going to force that doctor to take as much time as I need to answer my questions. Poor doc.
Posted 7/22/2009 3:33 PM (GMT 0)
UK People!

Have you been given any medication for pain? How did you get a prescription? Paracetamol is doing nothing for me :(

I'm in constant pain with sharp stabbing pains in my lower right hand side every few seconds with a consistent dull ache between. I've had pain before but not like this, it feels like I'm being stabbed, and has been constant for the last few days.

I'm eating fine, not feeling nausea (but I'm taking meds for that), and been having relatively normal BM, so I don't think this is an obstruction.

I'm going to try and see my GP tomorrow, but when I saw them last week they didn't want to do anything until I got my GI referral. I still don't have a letter though and I'm not sure I can wait.

Thanks,
Anastasia
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