Another newbie saying hello !

[Miss Rose]

Hello all

I have been reading all of your stories for a week or two now and thought it time I introduced myself. So here is my story.

I have been suffering with my insides not working properly for three years, maybe longer. Frequent trips to the loo, never doing a solid poo, you know how it is. Then in May this year I had a what I thought was a stomach bug which never really went away. All this time, docs have been calling it IBS. I've been having terrible pain then finally some blood which got my doctors moving and I was sent to see the consultant. Two days before my appointment, up pops a perianal abscess for which I have taken a dose of metronidazole and am just about to start a second course. It really helped with my tummy pains but has not got rid of the abscess. Hoping to avoid surgury but think it will be inevitable. Colonoscopy now booked for early December, got the moviprep pack to take the day before.

Things have been progressively getting worse, I am now at a point that I consider what/how much I eat or I suffer so much the next few days and have to consider whether or not I have the energy to go out. I would still describe my symptons as mild but it is affecting my life much more than I would like. It's difficult coping with kids, work etc as I feel so tired all the time.

I have leant quite a lot from this forum already but what I really want to know is what treatment I am likely to be offered if/when I get a diagnosis. The treatment here in the UK seeems really different to that offered accross the pond. Can any UK people advise what I might be offered first. I feel ready to take some drugs to try to get this thing under control.

Anyway thanks for listening. I will update you as things move along.

 

[atcig]

I'm not in the UK so I will just say welcome to Crohn's Forum. I hope you get the info you need and the drugs you need.

 

[imisspopcorn]

:welcome: Miss Rose,

I wish I could give you an idea as to what meds you'll get, but even over here in the US different docs have varying strategies. I know they are approaching the disease more aggressively, especially when your having abscesses.

You really don't have a confirmed diagnosis yet???....I'm sorry that you've had to go through all that, only to end up with an abscess.

Well, in the past, docs would start us out on steroids and GI anti-inflammatory drugs (ascol, pentasa)....Then move to immno-suppressing drugs
like 6-mp/azathioprine......If those don't work they try immune modulating drugs like Remicade/Humira. Things have changed, so I really can't say what meds you will end up on. Research the treatment threads here on the forum. There is a ton of great info about the various meds. Good luck, and let us know how you are doing.

 

[Agent X20]

Hi Miss Rose
Treatment might depend on how serious the consultant thinks it is at the start. When I was first diagnosed... a looonnnggg time ago, I was on Prednisone for quite a while (too long, in fact). Then I was on nothing for many years... although I was very stupid and didn't go to the GP when I had quite severe symptoms... not a good idea.
When I got a grip again, I was put on Asacol (mesalazine) which I think is quite mild but did the trick for a few years. Then I had a bit of a flare two and a half years ago, and have been on Azathioprine ever since. That seems to be really working now.
Maybe when you get a diagnosis and treatment you can compare notes with more people here. Taking notice and being careful about what you eat is good idea, though!

 

[forum contributor]

Hey, Rose! :welcome:

Sorry to hear how you've been feeling. Isn't it sad that something like bleeding has to occur until you can get docs to actually DO something??

Happy to have you here!

 

[Guest]

hi Miss Rose, welcome to the forum

it's really difficult to predict which way a consultant may go with meds following diagnosis.. i'm in the UK and it's quite common to hear, as Steve mentioned, people going onto pred first, then Asacol.. but your own doctor may have other favourites. let us know how it all goes and what he puts you on, and good luck!

 

[Rhonda]

Welcome Rose, I'm across the pond from you so I'm not much help. Good luck with your diagnosis.

 

[farm]

:welcome:

 

[Nancy Lee]

Welcome to the Crohn's Forum Miss Rose!

I'm over hear in Canada but I think most doctors start out with prednisone depending on the severity of your symptoms after a confirmed diagnosis.

They will be able to do that with a colonoscopy.

Wishing you all the best...

Keep in touch with us please.

Welcoming Hugs~Nancy

 

[fenway1971]

Welcome to the forum! I started on asacol then moved to prednisone and now 6mp. But each doc is different. Good luck!

 

[GirlFriday]

Welcome Mis Rose! So glad you found this place - the support is wonderful. Good luck with your upcoming colonoscopy.

 

[NatalieMT]

Welcome Miss Rose! I'm living in the UK too - which part of the country are you in?

So sorry to hear you are feeling so rough at the moment, hope doctors can sort you out quickly. It's difficult to say what medication you might be offered, I guess it depends on what the colonoscopy shows up. Usually to get initial inflammation under control a course of steroids such as prednisolone is prescribed and then a more long term maintenance drug. I think most doctors take a step up approach, starting with the medication that is perhaps the least aggressive and working up if/when symptoms worsen or if a medication has little effect. I was first put on Pentasa and Azathioprine - a 5 ASA an immunosuppressant respectively. I'm currently transitioning to Infliximab - an anti TNF as unfortunately my symptoms are still not under control. Surgery might also be an option if you have an area of bowel with is particularly diseased.

 

[farm]

:welcome:

 

[Guestly]

Hi Miss Rose,

Hope you start to feel better soon. I am in the UK too. I started on steroids (entocort), and not managed to taper off them yet, have had a dalliance with Pentasa which did not turn out to be the miracle bum cork I had hoped for (some things work for some people, not for others - apparently it's a very effective treatment for a lot of people), then I went onto Azathioprine, which was not so hot, and now I am taking Mercaptopurine which seems ok.

What you will find is that there is huge variety in the treatment journeys people have - even in the uk, and I guess this depends on the severity of your disease, how you react to different medicines, and even the preferences of your doc.

On the plus side - thank goodness you are in the UK - I have read so many stories about desperately ill crohnies on here who don't have insurance or cash, and I count myself lucky to be a patron of the nhs. I recommend you get yourself a pre-payment certificate - for a tenner a month all your prescriptions are covered - bargain!

Good luck and keep us posted.

Lishyloo

 

[Miss Rose]

It's moviprep day today - took the first dose an hour ago and still waiting:-0 I guess everything in my tummy already made an exit this morning.
Colonocopy tomorrow. Feeling a bit apprehensive as tummy very sore just now. Looking forward to some kind of a diagnosis. Any advice for getting through today/tonight ? I feel a bit funny if I don't eat regulary and have to go right through until tomorrow lunchtime after my procedure before I can eat anything.

 

[Guestly]

Good luck for tomorrow Miss Rose - I reckon you have a long night ahead of you - I recommend shuffling a duvet and a pillow into your bathroom!

Having said that if you are not eating much maybe not so much for the prep to purge!

Anyway - hope it goes well tomorrow - I have my next colonoscopy in a week - yey!

Lishyloo

 

[Jennjenn]

:welcome:
Movie prep Yuck! If it takes a while to work dont worry it does sometimes.
I wish you the best of luck tommorow for answers to getting on the right track to feeling well

 

[imisspopcorn]

Good luck.....My advice is don't watch any cooking shows until after the procedure. You will be plenty hungry.

 

[Miss Rose]

Thanks everyone. I am very hungry - just had to choose my christmas party menu - mmmmmm - could eat it all now. Prep has not been too bad - still got a glass to go so I am bit behind schedule but I go to bed late anyway not the early 10pm scheduled on my doctors letter. I want to get it all over with tomorrow and get some results. I know I need to be on medication I just hope the doc won't make me wait another two weeks as it will take me up to Christmas all the while feeling rubbish. No food in my tummy equals no pain though so I might get my first good nights sleep in a while. Has anyone left the hospital with meds or do you usually have to wait until the follow up. I am on no medications at all presently.

Will update you in a few days.

 

[Guestly]

After my first colonoscopy the doc came to see me and gave me the meds to go home with - I was a bit spaced though and couldn't remember what he had said!

GOOD LUCK!

Lishyloo x

 

[Miss Rose]

Diagnosis

Well I'm just back from the hospital having had a very very rough day. Colonoscopy was hell, had to have extra pain relief. I felt a bit foolish for screaming in agony but the pain was so bad. Had my meds topped up and was able to complete the procedure.

I now have a diognosis of crohns, several (seven I think) biopsies have been taken along with a load of blood for testing.

I have been prescribed prednisolone and pentasa which I will start tomorrow.

Felt a bit wobbly at first but now feel relieved to finally know whats going on in there and to get some treatment. Hopefully I will be able to enjoy my Christmas dinner in a few weeks time instead of suffering in agony afterwards. I actually feel quite releaved and possitive.

My family are all a bit shocked and scared but I have given them some leaflets to read so they can understand what is happening to me. Thanks to everyone on this forum as I already knew quite a lot about this disease and the drugs I have been given so I was able to understand what the doctor was talking about. The support I have been given has been great too.

I will update on my progress once the drugs start to kick in.

 

[Nancy Lee]

Ah let me give you a gentle hug (((Miss Rose)))
A colonoscopy is not the most pleasant procedure..
but you're over it now...I'm sorry you have Crohn's..
But now you can put a label on why you have been feeling so sick.

I have been on Prednisone and Pentasa...both very good drugs.
The prednisone or prednisolone works quickly, and I found it to
give me a sense of well being almost immediately.

Just be careful what you do eat...
I was sent a dietitian while in the hospital to help me with the
choosing the right foods to eat.

It's good to get reading material for family so they can understand fully
just what you have, what needs to be done and so on.

You rest up now and let us know how you do after a few days on the meds.

Healing Hugs~Nancy

 

[phillycrohns]

Hi Rose:

Try low dose naltrexone. Several people in this forum (including myself) are on it with a great degree of sucess. Check out this Web site for more information: http://www.lowdosenaltrexone.org/ and http://www.ldners.org/. There should be some information on these sites about how to find doctors in the UK that will prescribe it. It is a drug you can definitely get in the UK--the Low Dose Naltrexone Foundation was actually started in the UK I believe. Good luck!

Chris

 

[kansas]

Hi Miss Rose,
I am sure you have heard this before, but a food and poo journal is a great idea. When I was in and out of the hospital, then in it for two months straight, it was a very important tool to keep track of what is working and how it is all working....Especially when starting new medications. I have tried prednisone, pentasa, Humira, cipro, flagyl, now on to Remicade and just started imuran. I am sure there is more. Everything seems to be working well now.....if my darned fistulas would just close all the way up Doctors should really be interested in what your keeping track of and it seems to me that they will take your treatment more seriously and discuss options (especially when you write them down in front of them) when a track record is kept. I like the small moleskin leather bound with the elastic band to keep it closed. Very professional.:ybiggrin: My prayers are with you, stay positive, blessings are everywhere.
Sam

 

[imisspopcorn]

Well Miss Rose, I'm happy and sad that you have a diagnosis. I think the steroids will give you some relief. I hope you go straight into remission. Keep us posted on your progress. I hope you have a wonderful holiday....Good luck

 

[Miss Rose]

Thank you everyone. I am feeling a lot brighter today. I have not eaten much yet but I have been to my GP (General Practitioner) and picked up all my meds and had a chat and asked lots of questions that I had been too groggy to ask yesterday. It might be in my mind but I feel that the steriods may be making my energy levels go up - but then I only started them this morning so maybe it is just my improved state of mind.

I still feel like I have been kicked by a horse. The pentasa pills look like they were made for a horse - huge ! And the prednisolone tablets are so small I have trouble getting eight out together and down the hatch without losing some. It all feels very complicated and too much to remember at the moment.

I've ordered my pre-payment prescription direct debit card and set up repeat prescripions with my local pharmacy to make life a bit easier.

I am hoping that yesterday is the sickest I will ever feel and everything from here is up. Thanks for all your good wishes people - it really helps.

I've joined this club which I did not want to be in but I'm very glad to have all of you around giving your answers and support. Hopefully the more I learn I can contribute my own experiences and give a little help and reasurance back.

Best wishes to you all.

 

[LoobyLoo]

I had loads of energy when I first started on steroids too! It was like a second wind after feeling so ill for so long. Hope it keeps up for you. I'm in Uk too and pretty much had same as others on here, Asacol and Pentasa mainly.

Welcome to the forum anyway, I have found it really useful. I'm sure you will too.

 

[Guestly]

Great news Miss Rose!

I find the steroids effect my energy levels very quickly too... and yes the Pentasa are HUGE!!! Like frisbees!!!


Smart move with the pre-payment - its an absolute bargain - I dont even have to pay for paracetamol now!

Fingers crossed this the start of a healthier you!

Lishyloo x