Hello from near Warrington Cheshire

[Gray C]

Hello everybody.

At 1.30pm today I had a colonoscopy and I have just been diagnosed with mild to moderate Crohn's Disease. They took a biopsy and the type of Crohn's is not known yet.

My God, this has been the most scariest few weeks of my life. Talk of bowel and colon cancer as well as Crohn's, colitis etc has been very worrying. I still also have to have a blood test to rule out coeliac's disease.

I do not mind admitting that all morning I was petrified of the colonoscopy and getting the results.

I was OK until I read about all the potential complications that could go wrong with the procedure

Still feeling as if I am on another planet, but feel a hell of a lot more relaxed right now, although I do not know what lies ahead and this is where I now actually start to learn what is actually wrong with me

 

[Crohn's 35]

Hi Gray :welcome:. You are in the best place to learn information of all IBD and IBS symptoms, meds, natural alternatives, what to expect. Keep in mind we are just like you and have the disease. We are not doctors but we do share our opinions of what is out there and the possibility of reaction to drugs, and support.

It is scary.. I didn't have the opportunity to use computers when I was diagnosed. You can ask us anything you need or just vent and share along with others. First thing is to try and avoid stress.

Can you tell us your symptoms and how you got to be going to get a colonscopy?

:hang: there are many people from the UK here. More help is coming.

 

[Gray C]

Here are the symptoms that got me to being sent for a colonoscopy

A change in bm started about 2 months ago. Prior to this I was feeling quite bloated and was a bit constipated. Suddenly this changed to getting lower abdomen discomfort which gave me an immediate need to go to the loo. I developed diarrhoea with a frequency to go more often throughout the day, with a lot more frequency first thing in the morning (sometimes up to 3 times in first 10 mins). Sometimes there is blood in the motions, but that may be down to hemorrhoids.

Generally a feeling of discomfort and lethargy too

I think I will have to learn the spelling of some of these difficult words now lol

 

[sandra]

live

Hello everybody.

At 1.30pm today I had a colonoscopy and I have just been diagnosed with mild to moderate Crohn's Disease. They took a biopsy and the type of Crohn's is not known yet.

My God, this has been the most scariest few weeks of my life. Talk of bowel and colon cancer as well as Crohn's, colitis etc has been very worrying. I still also have to have a blood test to rule out coeliac's disease.

I do not mind admitting that all morning I was petrified of the colonoscopy and getting the results.

I was OK until I read about all the potential complications that could go wrong with the procedure

Still feeling as if I am on another planet, but feel a hell of a lot more relaxed right now, although I do not know what lies ahead and this is where I now actually start to learn what is actually wrong with me

hi gray
i know how you feel that was me back in september this year, been in and out of hospital and just sent home them saying was obstruction, then really poorly and kept in for 2 weeks,had c.t. scan ad barium exray and was told i had crohns, i havent been able to eat since 20th sept on drink called modulen and it was horrid to drink but have got use to it and it has really heped me with the inflamtion and the pain, got to have mri scan soon,i was told it could be cancer and i went to bits so the relief when they said wot it was i cried buckets, still hard to get me head around it, but this dease runs in my family, my brother has had it for 32 years, and is doing well, were as me i get it at the age of 54 ,kids all grown up and think yea my time now, well and truly stuck at home after been signed off work, all i can say is i keep smiling and just think there worse people off than me, u take care xx i live in not far from you near cheshire oaks xx

regards ]
sandra

 

[Gray C]

Hi Sandra

Seems you have had a tough time and I hope things improve for you soon.

Still shaking here lol

I live near Frodsham so we are quite close to each other

 

[sandra]

Hi Sandra

Seems you have had a tough time and I hope things improve for you soon.

Still shaking here lol

I live near Frodsham so we are quite close to each other

hiya gray

hope you ok, ive been put on azathaprine for the crohns ,you wasnt in the countess was you ,i was and in ward 49 they were fantastic, and dont want to go back in there for a while ha ha, keep well

love
sandra x

 

[Gray C]

I went as a day patient in Warrington General. Still feel a bit fuzzy headed following the sedation.

Going to have a nice drink of wine tomorrow evening

 

[KazT17]

Hiya Gray C, and hello again Sandra,

Please think twice about the wine. I was diagnosed just before Christmas last year, very similar story. Had a couple of glasses of wine on Christmas day and made myself really ill! I had no idea about low residue diets etc,or the modulen Sandra is on, at this time. I wish I knew then what I know now. I remember the shock and disbelief in those first few weeks. But I have gradually come to accept it all - even the ileostomy.

I don't live far from you either, near Ormskirk.

Take it slowly and look after yourself in these early days. It could make a big difference.

Lots of luck, Kaz xxx

 

[sandra]

Hiya Gray C, and hello again Sandra,

Please think twice about the wine. I was diagnosed just before Christmas last year, very similar story. Had a couple of glasses of wine on Christmas day and made myself really ill! I had no idea about low residue diets etc,or the modulen Sandra is on, at this time. I wish I knew then what I know now. I remember the shock and disbelief in those first few weeks. But I have gradually come to accept it all - even the ileostomy.

I don't live far from you either, near Ormskirk.

Take it slowly and look after yourself in these early days. It could make a big difference.

Lots of luck, Kaz xxx

hi kaz
how are things with you hun, im waitin for a mri scan now ,think the crohns gone further,1st dec i start to eat, think i will be frightend too, hope you keeping well
love
sandra x

 

[Jessi]

Hi Gray. Welcome to the forum. Sorry that you have to go through all this garbage. I'm really glad that your GI ordered a scope so early on. There are many people here that didn't get diagnosed for several years into their disease. Some are still waiting...

It's not great news, but now you can get the help that you need. What medicines did your doc prescribe? If any?

 

[KazT17]

Hi Sandra, sorry to hear you are having more tests. This disease is so unpredicatable. I thought I would be scared to eat again too, but it didn't take me long to get into the swing lol.

I am seeing my consultant Monday and surgeon the week after. I need the remainder of my colon removing but I am scared stiff of more surgery.

Felt unwell for a while now so trying to keep to a mainly liquid diet. Are you going to watch 'The Food Hosptial' on Tuesday? It looks good, a Crohn's patient is given a diet to control her symprtoms and it seems to have worked.

Good luck with the MRI. Let me know how you get on.

Love Kaz xxx

 

[Gray C]

Only got the result yesterday afternoon so I have not been prescribed any drugs or told I need any other type of treatment yet.

 

[Jessi]

My GI prescribed 3 Asacol 3xdaily (9 pills a day) and 60mg Prednisone (tapered to 0 over 6 weeks) - this was prescribed IMMEDIATELY upon diagnosis, while I was still very loopy from the anesthesia after my scope. If you feel like you need some treatment right away, speak up and demand it. You know your body well. Otherwise, if you're fine to wait, then hang in there. I just hope you and your doc find a plan that works for you. :hug:

 

[robbo87]

Hi, gray and welcome to the forum, Sorry to hear about your diagnosis, I remember my first colonoscopy a few years ago when i was 21, and it was the first medical procedure I'd ever had, so i know exactly what you mean about being terrified before hand! But glad it went ok, and even though it's not great to be diagnosed with crohns, you atleast know what is wrong and can look to getting it treated! I started off with a mild to moderate diagnosis and was started on pentasa but I guess your specialist will have a better idea than me on where to start!.. Hope it all gets sorted for you soon!

coincidentally im only down the road in Gods country (Wigan ;-) )

 

[RochelleRudolph]

Hi Gray,

I am not too far from you as well, I am in North Manchester. My husband and I have been to lovely hotel in Frodsham a few times, up a hill somewhere??

I was diagnosed with Crohns in 2000, and after Prednisolone for a bit (can't even remember how long i was on it), have been in remission (ie no symptoms) for about 9 to 10 years, but think i am having a flare up at the moment, just waiting for an appointment with a Gastroenterologist and i am actually hoping for a colonoscopy just to see what is going on. I have had two in the past and the worst part was definitely the prep the day before. Don't actually remember the procedure as i was so knocked out!!!!

Hope you are feeling better soon.

Rochelle
xxx

 

[Astra]

Hiya all you North West peeps!
Welcome Gray, Sandra and Rochelle!

And Martin, how you doing lately?

Hiya Kaz, sorry to hear you're having surgery again, hope you're ok? xxx

Gray try not to fret, it is overwhelming at first, and we're here to answer any questions you might have.
Your doc might start you on Pentasa first. In the meantime read our treatment section and get genned up on all the info, this will give you some ammo when you see your doc.
If you're not happy with Warrington, ask for a referral to Whiston, outstanding service there!
Lotsa luv
Joan xxx

 

[robbo87]

And Martin, how you doing lately?

I'm doing ok thanks, Put a little bit of weight back on since i came home and generally feeling a million times better than I did, just my blood results aren't too promising which is the only worry, but seeing my surgeon and crohns specialist on Thursday so hopefully that can clear things up and get somat sorted! how have you been?

 

[loosewheels]

Hi Gray,
Not too far from you either, just along on the Wirral. First diagnosed with Crohns in 97, back in hosp in 06 for an op, managed to stay out of hospital until last year, then had really bad pain on right side, x ray after xray showed inflamed bowel, but consultant decided not to cut inflamed area out as it could lead to a bag, so was treated with drugs, still spent just over a week in hospital, went home then a week or so later had pain breathing, in hospital again, this time for a blood clot, seems it can happen to us crohnies, off work for 3 months.Yesterday went to classic car show in Birmingham, must have been too much for me, spent all day crashed out on the sofa, but hey, I'm alive !!:dance:

 

[ormsklad]

Hi everyone in the northwest and greatings from southport!

Its a a nightmare and I hope I wake up one morning and its been a bad dream! I am fed up with the streiods and the time off work sounds daft.

 

[JenniferH]

Being diagnosed can be VERY overwhelming. It seems we get bombarded with tons of information at the beginning which we can't quite take in, then nothing. It can also be a bit of a waiting game with seeing doctor's. I had to ring my gastroenterologist last week because I'm having another flare up. I rang him on Wed, he rang me back today, and "hopefully" he'll see me within the next 3 weeks! In the meantime shall I roll around the floor in agony? Make a hundred trips to the loo? Become more and more tired? I guess so!?!?

Keep checking out the forum. Loads of your questions can be answered here and there's always TONS of support. Hope you are feeling better soon.

 

[loosewheels]

Hi Jennifer,

The hospital I attend has a gastro nurse which I can contact as and when, I have had to see them in the past and it has never taken more than 48 hours, your hospital should have these nurses as well, should you be in a bad way then theses nurses contact the consultant stright away.
Could be worth looking into.

 

[JenniferH]

Thanks loosewheels. I'm going to ring them tomorrow to ask about a gastro nurse. At the minute my consultant comes out to a local hospital to see me, and I only go to Southampton General for procedures/hospital stays etc. Maybe the local hospital doesn't have a gastro nurse so that's why I wasn't given one??

 

[ChrisJue]

Hi Gray I live Manchester i've had Crohns for 34 years and still find I need help sometimes first place I look is this forum they are a great bunch of people and always seem to have the answers. last year my crohns came back I had to go for a colonoscopy I was a bit worried about it but as it turned out I had nothing to worry about the worst thing was drinking the laxative horrible stuff lol. the specialist has put me on Humira Injections and all seemed well until my last blood test I'm seeing specialist on thursday to find out what's up fingers crossed. Anyway I'm going on a bit about myself as you say the doc said its a seems mild case of crohns I think it likely you will be given some form of drug. Here's hoping you get sorted soon and get on the mend.

Chris

 

[Gray C]

Hi
Here is an update to my earlier post.

I have now been diagnosed with Ulcerative Colitis and been prescribed a course of steroids (Prednisilone 5mg) for a period of 3 weeks and also Mesalazine (asacol) 400mg 3x2 times a day. After my colonoscopy I was told I had Crohn's Disease but the biopsy has confirmed Colitis. I am not sure whether this is good or bad to be honest?

I know next to nothing about the disease, apart from the symptoms of course, and I look forward to obtaining more advice.

I guess I now need to join the UC section now lol

Graham

 

[Jessi]

Gray ~ this is much better news in my opinion. I have UC, as well. UC affects only the colon, whereas CD affects the entire digestive tract from mouth to anus.

It is said that UC can be "cured" by removing the colon. CD patients have no such luck, unfortunately.

I say, relax your mind a bit. Just concentrate on healing. :hug:

 

[Gray C]

Hi

Thanks for your encouraging comments Jessi.

I have been reading about a diet that may help UC. It is Breaking the Vicious Cycle: Intestinal Health Through Diet. I may give it a try.

 

[Jessi]

That's the Specific Carbohydrate Diet or SCD. It's a good one for many. It goes through the process of elimination. There are some flaws in it, though. Peanuts and peanut butter are hard on a lot of people. Just find what works for you and stick with it.

If you're going that route, I recommend buying the e-book to go along with it. It's called SCD Lifestyle Surviving to Thriving written by Jordan Reasoner and Steven Wright. It's a great way to kick off the diet quickly and accurately. Go to SCDLifestylebook.com if you want to see more about it.

I read a little bit of it, but honestly got lazy and quit. I've been thinking about doing it, but not sure if it's the right diet for me.

Good luck with whatever you choose. I hope you find something that helps. :hug:

 

[Gray C]

Jessi

Thanks for yet more advice. Not yet decided if I want to go down this route yet but if I can control things without having to constantly go on to steroids that must be a plus.

G
x