Hi everyone, My name is Suz and i am a 41 year old teacher and mum of 2. In january i was admitted with hospital with severe infection in abdomen. Scans showed appendicitis and i went to theatre to have it out. Turns out i had a chronic abcess on my fallopian tube. Never thought anthing more until about a month ago got a painful lump in the same place. Was admitted to hospital with another infection. The doctors have now said it is crohns and the abscess in January fits with crohns.I get no diarhoea and the ct scan was unclear, as was the ultrasound. Had a white blood cell scan - where they reinjected my white blood cells with a radioactive tracer. This has showed infection in the bowel area beside the appendix. Having a colonoscopy with biopsies in 3 weeks time and have just come off the antibiotics 9 on them 4 weeks!] When i was dicharged from hospital 3 weeks agol i was put on masalizine and they have now doubled the dose but i still have the inflammed lump.
I am just so confused! Has anyone else had a similar story. My bowel movements are normal - so unlike the stories i hear of crohns. How will i know what triggers the inflammation eg foods etc as no diarrhoea to indicate this.? Will the masalizine reduce the inflammation and then it wont come back? The only thing i find is when i do too much lifting, walking up stairs or the stomach is poked and prodded it seems to inflame it even more and it gets worse. I really hope someone will be able to help me  as i am so confused and scared of what the future will hold. I am normally so full of life and good health.!!!

Hi Suz

Welcome to the site.

I'm 40 and was diagnosed 18 months ago.  My Crohn's first appeared 3 years ago as a perianal abscess.  I'd had no other symptoms and like you I had always been very healthy. I had surgery to drain the abscess and then further ops to deal with the fistulas but never had diarrhea so the consultant didn't diagnose Crohns at first, then I started to feel bloated and just not quite right so he did further investigations but I've been lucky and never suffered with really bad diarrhea like some people do.  Crohns is a very individual disease and so affects everyone differently.

It is confusing and scary but try not to overly worry, people are living with Crohns not dying from it and most people carry on a completely normal life and Crohns is just there in the background.  Most people with Crohns have times when it flares up and then try to take it easy, you'll learn to listen to your body.  It can be an unpredictable disease and it's not always easy but please remember that you'll read all sorts of horror stories on the internet, these are often the worse case examples and it doesn't mean it will happen to you.  

Sometimes people just have a mild flare and it's treated with drugs and it never comes back again but usually Crohns is relapsing remitting and some form of medication is required to keep inflammation under control.  It was having to take drugs for ever that scared me more than having the disease, but now I'm on them it's part of normal life, you'd be amazed at how well you can cope.

Good luck with the colonoscopy, let us know how you get on.

Take Care
Suze (another one!) x

Thanks Suze, your words were very reassuring. Will the colonoscopy definately show if it crohns or not, do you know? I suppose the message is i just need to be patient and to see how crohns effects me as it is so different with different people. Are you on masalizine and has that kept the symptoms away?

Hi Suz

The colonoscopy will only show if it's definitely Crohns if it's in the Colon, you become very familiar with your insides, I had no idea where anything was before this started and was very squeamish, now I find it fascinating!  Anyway, one of the places Crohns loves is the terminal ileum which is the end of your small intestine, then there's a valve where it joins your large intestine or colon.  Sometimes they can get the scope through the valve to see the ileum, this is near your appendix.  They usually do an MRI or Barium Follow through Xray to look at your small intestine but I guess this is what your CT scan looked at?

I haven't had mesalazine but it's a very common drugs used for Crohns.  I'm on Azathioprine, another common one.  I can't tolerate the full dose and they didn't think it was going to work and I was scheduled for a bowel resection then after 4 months it seemed to start working so I got a repreive and now feel well again.  I need to be very careful what I eat as I have a stricture from the scarring caused by having active Crohns for so long before it was diagnosed but otherwise I have a healthy active lifestyle thankfully.

I think the worst part is the beginning because it's all so new and you think the worst, keep having tests etc... it's such an uncertain time.  Just shout if you have any more questions, I found this site so helpful when I was diagnosed, hope it helps you too. x

Hi Suze,
if only i could get rid of the constant pain of the infection[is it this?] or the inflammation [ or is it that?] Not sure whether its the inflammation that causes the infection or vise versae. The pain radiates down my leg. I am off work still as i am a primary school teacher and believe it or not it is an incredibly physical job. I am finding that walking up and down stairs , lifting  etc seems to really irritate the infammation/ infection and my stomach swells and it gets worse. apart from that i have no symptoms. My partner says that it could be that i have to accept that this is as good as it gets and i am so pleased i do not have half of the horrendous symptoms but i still would like to get back to work and normal activity. I do feel lucky to not have had years of this before being tested as hopefully they will get it under control. Have you been told not to have ibuprofen cos that normally works for me but i am avoiding it as so many people on the forum say they have been told to.
Thank you so much for your support, it is so much appreciated

Hi Suz

Is the pain worse now than when you last saw a doctor?  If you've just stopped antibiotics then maybe you've still got an infection.  If it's still infected then mesalazine won't help, you'd need more antibiotics.  I've not had an abscess / lump in the same area as you but they are incredibly painful.   It may be worth going to your GP as if your next appointment is the colonoscopy in 3 weeks that's a long time to be in so much pain.  This isn't as good as it gets, you will get better, you've got something acute at the moment which will be fixed.  Maybe this is as bad as it gets?

Definitely don't take ibuprofen or aspirin, they aggravate the lining of the stomach and can cause inflammation and trigger a flare.  I only take paracetamol but after surgery they've given me cocodamol and tramadol which are OK too.

Try to take it easy if you can, stop lifting and look after yourself, you're allowed to feel sorry for yourself and spoil yourself a bit too!

Take Care x

Hi I'm new to this also was looking for any support or advice possible. Any ideas to help overcome the pain.  I'm really struggling with everything I have given up it doesnt feel like my life anymore. If anyone could help it would be great!!
thanks
V

Hi V
Sorry to hear your feeling so low, we all have times like this iam going through a flare up as well, To help me manage my pain i just take normal painkillers and my doctor has also given me Tramadol which i believe works great, I was wondering do you have IBD nurses at your hospital cause they are there to help and listen to how you feel, I couldnt live without mine.
You will get through this bad time i have had crohns for about 5years so i know what you are going through. Plus dont hide how you feel from your friends and family they are there to help you aswell.

Take care and keep me posted on how you are doing or feeling.

Nicola

Hi Suz

I have been a sufferer since 1992 and have had all the tests, radioactive tags atached to white blood cells, barium meals, endoscopies, colonoscopies, you name it, I've had it lol.
There is no golden rule with diet or anything as I think each case is different. I eat a varied and often spicy diet including indian food, sometimes I eat it knowing that it will not be good for me but I refuse to let my illness rule my life. I want to stay in control.
I am on Pentasa for the Crohn's but you may find you have other side effects such as Hiatus Hernia, bleeding gums and mouth ulcers and even heamoroids (did I spell that right) which each require their own treatment or medication.
Don't despair, once they find the right treatment, whether it is medication or surgery you will be fine. Think of it as an annoying member of the family that really winds you up and can make you realy miserable but you have to tolerate cos it isn't going away.
So you either live with it and make the most of it or you fold in despair......I know which choice I took.
Good luck and chin up!

Thanks Nicola,

I was on tramadol for almost 7 months, because of the addictiveness of it my GP took me off it and prescribed pepperment oil capsules intsead which to be honest didnt make any noticeable difference.  I am struggling to find a DR to be of any help got a refferal to a dietitian who had never heard of crohns which didnt help so focusing my energy on trial and error with foods and researching as much as possible at the moment.  

V

Hi V
Iam shocked the dietitian had never heard of it, you dont seem to be getting the help you need and want, I was just wondering what area you stay in so i know to stay away from there. Have you asked your doc again for stronger pain relief i have been on tramadol for about 5years in total. I dont have a clue what peppermint oil tablets are meant to do for you, Thats a joke.
As for the diet iam still trying to work out what foods are suitable one day you can have something without a problem then the following week it causes havoc with my stomach.
Do you still see a consultant at the hospital.

Please keep me updated on how you are doing.

Nicola

Nicola,
No he discharged me cos he was a surgeon and im not a surgical case. No body else picked up my case. yes my GP is a bit of a joke, the peppermint oil capsules are ment top line the intestines to help food pass through them easier. needless to say that didnt work.  I'm beginning to feel like i'm banging my head off a brick wall! hopefully if i persevere long enough then someone will help me.  My eye consultant is really good my eyes have been a huge problem they say its an extraintestinal manifestation of crohns. So many big words assosiated with this lol

V

Hope this helps - I was diagnosed in 1983 after many trips to the Doc (2 years - yes!) with tummy pains I could not explain. Then in 83 due to a hernia problem caused by sports, and the same old pain I was sent for surgery to repair the hernia and to take out a suspected grumbling appendix.
I woke up after the op, to see the surgeon looking very grave sitting on my bed. All sorts of terrible things when through my head...Cancer?

...and then he told me that my appendix was totally overgrown with inflamed tissue caused by....chrohn's! They has taken almost 9 inches of small intenstine including the appendix out. 2 weeks in the hospital to recover...and after a month I was back at work.

I refused all medication. - I was NOT going on steroids - ever!

15 years later, I was beginning to get very bad attacks of pain which took me to my bed for days at a time, and the 'episodes' became more frequent during 1998 - I was told that due to the surgery and the increasing crohn's activity the gut had narrowed to a pin-hole and what I was experiencing was the peristalsis consrtictions trying to force food through that gave the pain. Each time I got this I found that radical self-inflicted vomiting seemed to empty most of the pressure and content, and it began to subside, leave a very sore gut that recovered over the next week.

This became so frequent I was forced to make a surgery booking once again =- the hospital specialist was extremely accomodating allowing me to choose a date....

1998 another operation and more taken out...shorter recovery time (better surgery techniques).

An I have been free of any symptoms until Jan this year - it has come back! - same increasing number of short very painful episodes so I knew what to expect.

Went to the Doc, they sent me to the consultant who suggeted another operation- and it was me that suggested trying Azathioprine (after a bit of research - talk about doing their work for them!)

Azathioprine is a drug that is used for transplants as it suppresses the immune system. In crohn's sufferers it appears that our own body is fighting our gut and targetting the lining thuis causing the ulcers and inflamation. AZ as I will call it could help suppress that aggressive behaviour...and so I found out that some sufferers were trying this drug...and after consideration, I was put on 200mg a day  - That was May this year.

After about 6 weeks (takes time apparently) the difference was amazing, and I am on a long term trial with it now...knowing that surgery can be an option if it does not work.

HOWEVER - there are side affects! and these side affects are different for different people. A good Consultant will monitor your bloods every 2 weeks for 4 months to check your liver function and the like. Fine for me. Then every 6 weeks etc etc.

...and don't be surprised if you start to gain weight - My diet has not changed, yet in 5 months I have put on 2 stone (not good) - The consultant says that this is because I have more healthy gut to absorb food now - Dayam! - Now wheres my treadmill?

Hope this helps!

i have just been diagnosed with crohns disease i am 23 and used to get quite bad symptoms all started with a boil and led to this.  I have had sygmoidoscopys and colonoscopys and now am getting an mri scan this thursday..............i feel like i have seen the hospital and doctor more in the last 2 months than i have in a lifetime and yet feel like i know nothing about the disease.  i am on prednisolone steriods and have been given azathuoprine to start taking in 10 days after a vaccine....... i have herd awfull things about this tablet about horrible side effects and am really just lookin for someone to tell me from their own experiences what it is like and a quick " non doctor" explanation to crohns disease.....feel like my life is slowly ending all the bad things i have read and been told just need a little advice and guidance ....thanks x

Hi Dundee1987. Iam 29 years old and have had crohns for 5years roughly when i was diagnosed i thought this was the end of the world and my life was over as no one ever explained it properly to me. I found reading the Nacc.org.uk website very useful its full of facts and information and easy to understand. I was on Azathioprine for a short while but my white cells got to low that is the only side affect i had. I go on prednisolone every few months and the only side affect iget is i eat more than often but i cope with that because it works wonders for my crohns i have asked to be on it full time but my Doc says NO.
I also find this website is great as you chat to people who know what we are going through.
Just try to keep your chin up and talk to your friends and family or this forum if you need any help or advice.
Takecare. x

Hi everyone,
Just to give you all an update. I went in for my colonoscopy and they perforated the bowel whilst doing it. I was sent to theatre for an emergancy op to repear the perforation. They decided as the colonoscopy had shown a stricture and crohns riddled area around the terminal ileum and so they did a resection. They took away the diseased part plus the appendix plus the ceacum valve. I am a week post op and must admit - still in shock. I have a horrible wound from about an inch above my tummy button , all the way down. On the plus side i can eat anything without any pain. I am scared though that this will be short lived and after all this i will become poorly again soon. I know this seems negative but i feel i have lost all my confidence and hope. Your words of wisdom would be grateful , thanks, Suz x

Hi Suz

I've been wondering how you got on, so sorry to hear you've been through all this, what a nightmare for you.

Hopefully that's it all sorted now and you'll be OK.  Sometimes emergency ops are better as you don't have to decide whether to have it or not.

I was told that most people have 5 - 10 years sympton free after a resection so hope you stay well for a long time.

Take Care
Suze x

Are you having your blood checked regulary ?
When i had my resection,they found i couldnt absorb B12 !
Now on 3 monthly injections,(at least they are free)

Hi, my name is Gemma, I am 26 years old, have recently given birth to my 2nd son and I am also new to crohns, infact just had it confirmed today!
I started showing signs at the beginning of the year, high white blood cell count and blood when passing stoles, but as I had just found I was pregnant it was just passed off as being down to the pregnancy. Then when I was 30 weeks pregnant I developed an anal fissure and sores on my body and my mouth, again passed off as being down to pregnancy. The fissure has never healed and I was in hospital last Friday to undergo L.I.S surgery to help heal the fissure when the surgeon who was going to perform the operation saw something that made him suspect Crohn's.
I am quite disappointed with the way I have been treated and have since decided to go private than through the NHS as all I have been told is that yes I have Crohns but no healthcare professional has actually explained to me what Crohn's is and everything I know I only know because I have searched online.
I am very down and depressed at the moment as I now have 2 fissures and can barely walk. My husband has had to go on the sick from work so he can help to look after our 2 sons, Elliott 2 years old and Declan 2 months old

Hi, my name is Gemma, I am 26 years old, have recently given birth to my 2nd son and I am also new to crohns, infact just had it confirmed today!
I started showing signs at the beginning of the year, high white blood cell count and blood when passing stoles, but as I had just found I was pregnant it was just passed off as being down to the pregnancy. Then when I was 30 weeks pregnant I developed an anal fissure and sores on my body and my mouth, again passed off as being down to pregnancy. The fissure has never healed and I was in hospital last Friday to undergo L.I.S surgery to help heal the fissure when the surgeon who was going to perform the operation saw something that made him suspect Crohn's.
I am quite disappointed with the way I have been treated and have since decided to go private than through the NHS as all I have been told is that yes I have Crohns but no healthcare professional has actually explained to me what Crohn's is and everything I know I only know because I have searched online.
I am very down and depressed at the moment as I now have 2 fissures and can barely walk. My husband has had to go on the sick from work so he can help to look after our 2 sons, Elliott 2 years old and Declan 2 months old

Hi Gemma, I'm so sorry to hear you are so down, when this is supposed to be a happy time of year. I was 28 when I was diagnosed, I too found out (on my birthday) after I had my daughter (caesarian section).  I have always thought thats how I got mine because I got an infection after.Just like you nobody told me what Crohns was, and I feel I am still learning more and more as I go along. I am now 44 and have been under the NHS all that time, I have had good and bad consultants but I don't think I've ever been satisfied with any of them, I always feel fobbed off. So I just want to say whatever you decide don't let them ignore you. All the best x

Quoted from Oldbird

Hi Gemma, I'm so sorry to hear you are so down, when this is supposed to be a happy time of year. I was 28 when I was diagnosed, I too found out (on my birthday) after I had my daughter (caesarian section).  I have always thought thats how I got mine because I got an infection after.Just like you nobody told me what Crohns was, and I feel I am still learning more and more as I go along. I am now 44 and have been under the NHS all that time, I have had good and bad consultants but I don't think I've ever been satisfied with any of them, I always feel fobbed off. So I just want to say whatever you decide don't let them ignore you. All the best x

Thank you for your response. I think the main reason I am so down is due to the pain of the fissures. I feel if they would just heal (after 5 months its hard to believe they ever will!) then I could get back to my old self and start enjoying life more. I just never saw this coming as I am generally such an active person.
The holiday season is my favourite time of year, but I am just not enjoying it this year, being unable to walk I can't get out to do one of my favourite things - shopping! So having to do everything online and watching my husband doing everything with the children is breaking my heart. I know one day I will get better just wish I knew when!

Thanks Suze and Beefcake for your replies. i have been refered to a dr at another hospital who is a crohns specialist and has an interest in research etc.I am hoping that he will answer my many questions and boost my optomism plus check bloods etc. I do feel however that it is this website that has given me more info than the medics so far! Will keep u infomed xxxx