Crohn's Disease in the UK

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Me and My IBD, Before Diagnosis And To-date

Jason
Hello, my name is Jason. I am 28 and I currently live in CA. When I was 5 I would get terrible stomach aches allot. It was so bad that I would be doubled up in pain on the floor. When I was in school the teachers would tell the other kids just to ignore me, that I was faking it. After many tests I was diagnosed when I was 8 years old. I was put on some medications. When I was 13 it got worse and I had to have a surgery were they did a recession of part of my small intestine. It went into remission for two years. Then it got worse again. Some years it was so bad that I had to be hospitalized once a month, and I stayed in the hospital a week to two weeks at a time with IVs in me to rehydrate me. Around the age of 27 I went in for another surgery and they did another recession of my large intestine.
If you want to email me, my email is jaxwolf@earthlink.net

ALIESIA

Hi my names aliesia as you probably geussed im22 and i have had chrons for just 18 months but i suspect i had it much earlier as i had symptons for two years befor it was diagnosed . It all started after i had my daughter in 2000 i began to feel so tired i didnt want to get out of bed and when i did i would fall asleep but it was put down to having a baby it was only diagnosed when i was taken to a&e in october 2003 after collapsing at work i had it so long without knowing i had lost a1/3 of my bodys blood and two stone in weight . Im feeling so much better now that i am on the meds after reading all your storys i feel very lucky that my chrons is quite mild and i havent been hospitalised since I find it very hard to speak to people who do not have chrons as they do not understand im so glad i found this site i didnt know there were so many people out there with chrons as i dont know anybody who does. i have been trying for another baby with my partner but havent had much luck since ive had chrons if anybody else has experianced the same i would love to speak to you . I loved reading all your storys its nice to know your out there if you want to chat her is my email address. NICKY.CUPITT@NTLWORLD.COM BYEXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXX

SEAN

hey people. I have just stumbled across your site and it is comforting to know that there are so many others in my position. I am a 17 year old male from Oxfordshire, UK and was diagnosed with CD in sept 2001. currently on osalazine and azathioprine. It annoys me when people say to me 'oh, you look all right' what do they know? I try not to let it get on top of me but I'm afraid it has affected everything (socially and professionly). My hobbies are football (Bolton wanderers) and music. If anyone from the UK or anywhere just wants to say hi just send us an e-mail at: sean_bwfc@yahoo.co.uk Cheers

Hello, my name is Rene 30/f/NE !

I was recently diagnosed with CD. Started out I had injured myself at work picking up a patient that was approx 200lbs (with the help of another per of course). I ended up with 2 herniated disk and was finding it VERY difficult to walk. My hips & legs were in pain. The orthopedic doctor started giving me steroid shots in the hip; just to find that there was no relief. I went through about eight months of that and was feeling decent. Yea, I hurt & I would eat & then spend some time in the BR. I asked my doc a couple of times about the problem and he said that it was nothing. Nothing other than feeling like you were having a baby several times a day!!! This was January! Come August I was in a car crash. I was ejected from a car while it was airborne, and the car landed on top of me. I was pinned between the windshield and the hood for only God knows how long. My friend and I were in the middle of NOWHERE in a farmers field. Thank God the dog spotted us & went to the owners house & made such a fuss that the farmer came out to see what was going on. The farmer was shocked, because his dog never barks he's old and retired! Needless to say he spotted a flickering light and went to the pasture to check it out & saves our lives. I have a broken wrist, cut off eyelid (it's back now), injured L) leg, and severe abdominal bruising along with other small things. Immediately while in the hosp I started having loose stools and was in SEVERE pain like I had never before endured. Regardless I was determined to go home. I was on a walker and could take a few steps the first couple of weeks and just worked at it day after day. The diarrhea, cramping, pain all over didn't go away. One evening in Oct 2005 my husband came home & I was hurting so bad that all it took was for him to ask me what was for dinner. I COULDN'T WALK MORELESS COOK! Don't get me wrong my husband is great ! Had he known he would not have asked ! how . I made my way to the phone called the hospital and told them I would be there within the hour and that I would be driving myself and I wanted to be seen right away! My husband went to the bedroom and I left! I was there for two days and of course he came. Wasn't very happy with me, but trying to get anyone to understand the pain is like trying to get a cat to swim!!!! Once again they released me telling me to stay on a clear liquid diet and it would all go away. I couldn't even drink. Finally once again on 10/14/05 my husband was at work and not wanting to bother him (after all I felt like a hypochondriac) I called everyone I knew trying to get anyone to take me to the ER. Finally my cousin gave in after 3 hours of me calling and begging she took me! I stayed for 6 1/2 days and had a camera inserted in every opening of my body. In the time there I ate once and paid for it! Finally they obtained a gastrologist and he was determined. He came in and said has it occurred to you that this is not from the wreck? I said yes, but my M.D says that it has to be because he can't find anything other than an elevated blood count of 20k! (There was his first clue!) He continued the study & is certain it's crohns. How severe? We will be resuming test next week, as I have been home for 3 1/2 days now & still can't eat or drink without pain. I had my first session of remicade, I am on prednisone 20mg, entocort 9mg, bentyl 20mg X 4 times a day, and Lortab 500 & still no comfort. My broken bones from the wreck refuse to heal and the places where my stitches were are now very infected. I have no immune system to fight off the infection. I am tired all the time and walking to the restroom is painful. I'm tired of doctors mainly, and their games that they play. My MD assured me that I would feel great within a day after the remicade. I came home and had a reaction. I had 3 layers of clothes on and was freezing. I couldn't talk because my teeth were chattering! Still Yet, after the wreck I am just happy to be alive. I have 2 children 8 & 11 and a great husband of 12 yrs. I don't know that I could do this without him. It is very nice to meet you all and hear your stories. I felt like I was just crazy or getting there. I mean really it crossed my mind, "Is the pain all in my head?". No it's here and very real!

Cindy

Hi I do not have Crohn's Disease but my 26 year old daughter was just diagnosed with it after 9 months of abdominal pain and diarrhea. She does not have internet access, and I fell upon this sight just looking for information on CD. I have known a few people with it, but have never spoken with them about their illness.

This has been very enlightening for me to read about your experiences. I would like to pass some information on to my daughter. She is very frustrated with the pain and diarrhea right now. So far she has not experienced any of the other symptoms such as weight loss, anemia, fistula's, joint pain....etc.... She is always complaining of being extremely tired, but that was not very new to me as she has always seemed to me to be somewhat lazy.

My daughter's name is Reanna. She was in school for her RN degree and became pregnant and before her daughter was born, she started having the CD symptoms.

It took a few months before she actually went to the doctor and started being diagnosed. Her small bowel xray did show active ulcerative colitis, cryptitis, and and other things typical of CD. Reanna also has twin boys, age almost 7. Her baby girl is now 6 months old. She would like to go back to school and/or work, but with the CD, and 3 children and a mate.

Her life is plenty stressful and on my recommendation is holding off. I would welcome emails sent to my address with information and experiences that I could print off and give to Reanna.

She may be able to get on my computer sometime and respond.

I thank God that her Crohn's is not as bad as some of yours has been.

Thank you for being there.

My email address is

cindygm@swbell.net

cindygm@hotmail.com.

Cindy

Ronnie

I am 27 and come from Wakefield, West Yorkshire (although originally an essex girl - no jokes please- well only if they are funny)

I fell ill when I was 18 and like most people was told I had IBS especially as I was overweight .

Over the years I became worse , the symptoms increased and I started to loose weigh rapidly.

By the time Iwas 22 I was feeling ill and was taken in to hospital for an suspected apendectamy . Although it was my appendix --- It was then they found ,and I was told I had , crohn's disease.

Although they removed my appendix they also performed a resection of the small intestine .

Thankfully things improved greatly and I'm currently not on any medication. It seems to be under control on it's own

I Would love to hear from others any age or sex.

Matt

Hello everyone, my name's Matt. I'm originally from Canterbury in the SE of England but have moved around alot since I joined the Royal Air Force in 1998. I'm currently working in Northern Ireland.

I was diagnosed as having Crohn's in October 2002 and spent a month in hospital. I was put on prednisolone and mesalazine which improved my condition quite rapidly.

I was able to get back to work in November and since then have felt really good, apart from the pain which comes and goes. I'm now off the steroids and am on a maintenance dose of mesalazine. So far I'm still able to do everything that I've always loved doing, such as going to the gym and socialising with my friends (although I've had to reduce my alcohol intake somewhat! )

I suppose my Crohn's is still in it's early day's so I'm not sure what to expect in the future but reading your stories has really helped me.

Some of you have had such a rough time of it and I think it's great that you are able to keep your spirits up!

Anyway it would be great to hear from any of you,

You can email me at

mattmoon69@hotmail.com ,

I wish all of you the best for the future, take care, Matt.

HollyJo

Hi I've had crohns for about 8 yrs. now. I'm on all kinds of medications and have Remecade infusions every 2 to 3 months .

I recently had a bone scan and they found Im at very high risk of breaking bones due to all the medications I have to take and have taken over the years. (This could be the steroids)

It looks like I will have a knee replacement and to make matters worse I have now lost most of my teeth

I'm only 32 yrs old and Im having a hard time dealing with the fact that I feel 90 most of the time.

I recently started getting up in the morning feeling terrible pain in my fingers , hands and arms. I'm not sure what to think about this but it does scare me.

If any of you have experienced the same pains in your hands , fingers and feet , please please let me know what you havebeen told it it or what you think it culd be.

Tthank you very much,please email me at

hollybilyeu87@msn.com

Hollyjo

David

HI I'm David and have Crohns Disease.

Although I'm 48 I've had IBD for over 20 years. Thankfully I been able to manage with little disruption to my life..

I didn't have my first major (serious) flare utill May 1996. I have been on standard medication ever since . It seems to be doing it's job and once again thing are back under control. I am even working full days and am a part time rancher in my spare time. I love it.

I also consider mysef very lucky especially as I have been married for 27 years and we have 3 great sons aged 26, 24, and 21.

I wish you all the same happiness amd good health

Mauro

I was born in England but moved to Italy when I was one. In 1988 we moved back to the UK and I now live in Scotland with my brother .

I'd had my appendix removed in 1988 but had been pretty well until 1996.

At that time I was working as a trainee mechanic . Unfortunately I had a very bad accident at work . I was put on 3200 mg of Erythromycin antibots to stop any infection in my wounds spreading . It worked but appeared to trigger my bowel problems. I lost about 60 llbs in weight and spent the next year very ill either in bed or in the bathroom.

Two years later (1998) finally in Crohns was diagnosed.

I'd given up being a mechanic (as I was way too ill) and set my sights on going into I.T.

I went to unniversity but in 2001 the pressure of work and studying took it's toll and my health was deteriorating .

My doc advised me to take a year off but I spent most of that year in and out of hospital with partial obstructions. By March 2002 I'd became really ill from the strictures . I couldn't hold anything down other than liquids . I lasted 7 weeks , vomiting after any food or solids so finally in May of the same year I was admitted for surgery.

I had 8-9 feet of bowel removed in total . Most of my colon, some bowel further up and part of the termianl ileum. I made a good recovery after my operation and was walking within 8 hours after the operation. Although I was on TPN to build me up and still have a problem gaining weight.

In 2003 despite the set backs I graduated from university.

Update --- In August 2003 ---------- Mauro agreed (after a little pressure from me) to become another UK Assistant Manager for the Main site and Message Board. I am so so so pleased and he is already doing an excellent Job --- Caz xxxx

Susan

Hi my name is Susan.I live in Kentucky U.S.A with my wonderful husband and 2 wonderful boys. I just found out I am pregnant and am due April 11. I found out I had crohns disease a year ago and it changed my life. I try to not let it get me down, but sometimes it wins. I have not been able to get to remission and do not know if or when I will.

This wonderful board saved me my sanity and I am very greatful for that. Keep up the great work.

BabyLove

Hi my real name is Lyn, and I'm 37 years old and I live in South Australia. I had a daugther when I was 15. She has Muscular Dystrophy, Irritable Bowel Syndrome, Chronic Fatigue Syndrome, a weak bladder, osteoporosis, asthma, osteo-arthritis is allergy to MSG, Food Colouring and is Lactose Intolerant. Making meals for her is getting hard; have to be careful what I give her to eat. If you have any MSG colour free and lactose free recipes please e-mail them to me at BabyLovesU2@hotmail.com

Hug BabyLove<o:p></o:p>

*** Hi there! I'm Leia! ***

I am 19 years old and was diagnosed with CD about 4 years ago, it took long enough, 2 years of tests and probing, telling me it was all in my head and that id eaten some funny prawns! one 'doctor'even told me it was colic and growing pains! then the same doctor told me i had herpes-i was 14!!!

Anyway, in a flare up at the moment so feeling a bit crap, no pun intended lol, im on azothyaprine and prednisilone at the moment, along with some mini-planet-sized tablets to help a fistula.

All in all im not too bad, no operations...touch wood...and i think im pretty lucky, im a student nurse and most people are really understanding, except at places where you have to be a customer to use the loo, dont you hate that?!

Well, i love computer games and my consoles are all that keep me sane when im ill! id like to hear from anyone who wants to chat, so drop me a line some time at cheeseobsessed@hotmail.com

Heather

Hello,

Im 28 divorced for 3 yrs...no children but, want one orsome very badly. I was dx with crohns disease in November of '97. I live in the southwestern part of Virginia.

I havent had to have any surgeries but, do suffer from the flare ups which seem to be helped by preds and antibiotics. Been hospitalized several times in the past 4 months. I do have the fatigue, joint pains and still on preds (starting to come down now on 30mg a day) suffering from the moon face and other probs from the preds. Just want to add that I love you all and you have been a huge help and support to me. I just hope that I have and continue to do the same for you all.

Lots Of Love,

Heather A.

Katie

Hiya, Katgirl (katie) here ...am 27yrs old, fromEast Sussex. Have had CD for nearly 9 years. Was diagnosed when rushed in2 hospital, after months of being told i had IBS. Appendix taken out anyway!! (surprise surprise!). Have since had bowel resection (20cm small intestine only), & was lucky enough to get pulmonary embolism afterwards (ha ha). I've generally managed it up until year & 1/2 ago, in which i've had; chronic (grumbling) flare up, crohns related arthritis in knees, kidney infection, 12days in hospital, & the usual yummy liquid diet . It has all been bit more complicated recently by cracked ribs due to serious car accident!! Hence lots of time off work (they must love me, not). Anyway. Would love to hear from any CD sufferers of similar age...who are also trying to get pregnant!!! (guess that rules out the blokes!).

claire

hi my name is claire and i am 19 years old i have only just been diagnosed with crohns desease but it has been a very long jerney for me it has taken 4years for the docters to find out what was wrong with me it all started when i was 15years old i started getting abdomanal pain and direa all the time i went to the docters but like most of you i was told that it was IBS which then i was put on medication to help with it but did no good the pain just got worse but then it would settle down on its own but after abit is started up again and so i went back to the docter wair they sent me for a ultrasound which came back clear so no more investigation was done but the pain never went after that so all i could do was keep going back to the docters in the end they sent me to see a speshalist at the hospital wair they did more test and it showed up that i had inflamation on my small bowle so they put in for me to have more test but befor they could be carried out i bacame very ill and had to be rushed to hospital this was just befor christmas 2005 and they thorght i had apendistas so i had a laparoscapey with came back normal so they sent me home after they had got the pain under control but then in januarey 2006 i got rushed back in again because of the pain which all they did was get the pain under contol and send me home but then again in feberey 2006 i was rushed in again because i was unable to eat drink and had the pain aswell as direa really bad so they did a emergancie laparoscapey which showed up inflamation on the small bowle so they started me on antibiotics and other medication to help i got out of hospital on march 1st 2006 and went for a follow up on the 9th march with my consaltent which then he told me that i had crohns desease and stared me on tablets to help but unforchanetley they never help and the pain just got worse so i got rushed back into hospital wair they put me on other tablets aswell as the other ones and they have helped a little but as i am a newley diagnosed pashent i dont understand it to much but am trying to get my head round it i am unable to work at the moment because i am in that much pain but i have been through so much since december every month i have had to be hospitalized but touch wood so far things are going well but i am back in may 2006 with then they are telling me weather they are going to opparate but i just dont have crohns in a small bowle it also affects my wind pip which makes it hard to swollow food and flowide im always becoming dehigarated because of that and the direa but hopfulley will no more at my next check up. if anyone would like to talk please feal fee my email is speed_bump_6@hotmail.com

P.S sorry about the spelling i have dyslexia

Maggie

Hello to everyone I have just recently been diagnosed with Ulcerative Colitis

I have been searching the web to try and find more information about this and came across your most interesting site I hope that maybe I can email and talk with you all at some time as I am a little scared of the unknown and wonder what is in store for me after reading some of your details here .I am from Aus the land down under I look forward to hearing from you all and learning more about this desease My email sally513@hotmail.com please feel free to email me I am a little nervous at the moment and not quite sure what else to write here .This site has been most informative for me to learn more .Thankyou . Maggie !

Sweet D

Hi im sweet_d im 18 (19 in July) i live in essex england, i have Ulcerative Colitis. I was diagnosed in Oct 2002. But i suffered with out telling anyone for months but i was in so much pain i finnaly told my mum. At first they thought i might have picked sumink up (cuz i had bein on holiday to spain). After a month or two i was reffered to a IBD doc and i had the camra fing. I was put on steriods and asacol. but i was only ment to be on steriods for 3weeks but the doc mixed it up i was on them a month to long! Now im back on them due to a flare up. I HATE THEM

Ellie

Hi --- I have had Crohns since I was about seventeen but it was not diagnosed until about three years ago nd much heartache.

It started with abcesses in my mouth and I lost a few teeth. I then an abscess in my womb which burst and I had to have a hysterectomy.

The next one appeared on my side which again eventually burst leaving me with a fistula the size of my fist. The weight was falling off and I was being constantly sick.

I thought I had cancer and when I reached six stone they decided to operate, I was told I had Crohns Disease. I was in hospital for eight and a half months. When they finally let me out I was down to five stone. The operation kept it away for six months but then it cae back and I had another resection.

I dont know how anyone else feels this but when I am out I am constantly looking for the toilet just in case there is an accident.

When I am under any stress it gives me problems, but I try not to give into it but it is very hard. I have try just had to learn to live with it.

When I have an attack I hate the thought of having to go through an other operation.

I am so glad I have found people who finlly understand.

Thank You

Gail

Hi, My name is Gail, and I am 42 years old. I have been happily married for 22 years and we have a 13 year oldson, Daniel. I was diagnosed with Crohns a 2 years ago now. I'm one of the lucky ones I guess, only suffering with mild Crohns, although lately the pain is becoming alot more frequent.

I struggle along trying to get it right eating the right foods, etc. I no longer cope on my own, so my doctor has finally got me an appointment with a Dietician. I only hope he/she can help me get it right! I am only on Pentasa at the moment, I do wonder if it is working though. I couldn't have coped without being apart of Caz's great site. Everyone is so helpful.

Karen (Masaqo)

My name is Karen aka Coyote.

I'm 47 and live in Arizona U.S.A.

I was diagnosed with Crohns Disease in Oct. 2002 . I've also recently has CD related liver problems ---- i.e cloged bile ducts and as of yesterday hepitatitis.

I would really appreciate it if anyone could contact me or post on the message board if you've (or anyone you keep in contact with) has/ had these sorts of liver problems/

I would really appreciate feedback/emails or posts on your experience's as I'm not getting much help or info from my doctor.

I am still able to work but sometimes have a problem with my joints and severe cramping but I try to live an active a life as possible. I love to go hiking and spend time outdoors when the weather permits and I'm not too tired. My furrie dog babies help me in this area as they love to go walking. I would love to talk to other people with this disease as people who don't have it don't understand.

Three years ago I lost my medical and have had no medical treatment until recently when I moved here to Arizona. ( I formaly lived in Colorado) I am now applying for SSI Disability.

If I could help anyone out or if anyone wants to talk --- I'd be happy to.

Caz Has My Email Addy or Post on the Main Message Board

http://members4.boardhost.com/CrohnsChat/

Sarah

What a great site!

Hi all, I am Sarah and I have had Crohns for over 12 years,in the early stages I had ulcerated colitis on top of CD,which hospitalised me for over 6 weeks,and it is where I almost died.My CD started with eyeritis in one eye and then developed to both,and the continuous runs to the loo.I had all the stomach and joint pains,cramps and the tiredness and no energy.

I had the camera stuck everywhere, and the sickness was terrible.I had been to the doctors many times ,and no diagnosis,it was not till I eventually got to see a specialist 8 months later both my illnesses were diagnosed.I had 3 young children,and my husband Tim ,who was a postman,who was pioneering a Neighbourhood Watch scheme called TRAPS across the Country, at the time, so this made life horrendous! When I came home from Hospital ,I was bed ridden,and had a nurse everyday, till Tim got home from his rounds.I went back several times to Hospital with the flare ups,especially when my drugs were changed, and I ended up having many blood transfusions.This went on for 7 years,and the depression was terrible due to the drugs and illnesses.

Tim decided to look into where and the why's,and launched his campaigning,building many media friends as he went,he spent hours on the phone, raising the awareness,after work ,all weekends,he would not accept there were no answers,and finding the Proffessor at St Georges,answered a lot of the questions,and eventually a massive network of people were around to help, several major media stories suddenly shot the campaign foward, and one weekend Tim had managed to get CD featured on Newsnight,CountryFile and On the Record,all BBC programmes,and was featured in the Daily Mail, later Argus (Brighton) and it seemed like every month in the Courier newspaper.These stories helped to raise money from all over the Country.He works with the local NACC, and Action Research,to raise the awareness,and has sent out thousands of info packs all over this Country and overseas.

It is thanks to his "fighting" that things are starting to change,and we have a Government that is now actually listening,and after many letters to the Prime Minister and other Government Depts ,including DEFRA ,who now are consulting on a consultation paper,on how to keep MAP the bacteria ,out of Dairy cattle and Farming,which causes Crohns,which has now led to his campaign joining up with PARA in the USA,where there will be a write up very soon. Now that I feel normal and all my Crohns symptoms and pains have gone ,due to the alternatives Tim found,I have joined in to help him campaign,I feel now I can help ,I have the energy now ,and want to help those who have suffered as I have.

All my family and friends help where and when they can,as raising the awareness is so important.Hopefully by Sept 2004 we will have the DNA vaccine ,money permitting !

This is important for those not wishing to try alternatives,and as Tim says "it is up to each person to decide which coarse they choose,it's their bodies," and it is why he has campaigned,to widen the options for them, and for the reasons why they have Crohns,but most importantly he wants people to get better,and not suffer,and find the cure. Leave this with you,love to all,take care everyone,thinking of you all,love Sarah xxx

John

My name is John, I'm 26 and live in East Kilbride, Near Glasgow in Scotland. I've been married to Dawna for six years and we have a beautiful daughter called Caitlin, aged 3.

I was diagnosed with Crohn's Disease when I was about 21. It wasn't too bad at first but it got much worse as time went on. Each episode seemed to get worse each time. Took the usual medicine. Steroids, Mesalazine etc. Tried Azathioprine, but ended up in hospital for a week with Pancreatitis. One of my worst flare ups didn't respond to IV steroids so I was given a dose of Remicade. This worked for about six months. After this I was back in hospital, and this time I needed my colon removed. I now have a permanent illeostomy. No symptoms apart from tiredness until a couple of months ago. Had to get a bit of small bowel removed last month.

Haven't let it get me down. I'm back at work (was off for a couple of weeks) and I've caught up with my night school coursework.

Just trying to get on with it. These websites are good. They make me realise there are those who are much worse off.

I'm done boring you now! As my wife would say, keep your chin up. It's not easy I know

Cathy

Hello, my name is cathy and i have had crohns/coltis since i was about 30. now in my 40's. i have been very lucky as i have had no surguries.the only problem i have incounter is lost of some of my eyesight in righteye. i am on 2 kinds of medications. i also devoloped high blood pressure so i have pills for that. i was hoping to find out if there is anykind of foods that can help me without making me have the runs so often. also i wanted to know if there was anyone else from brandon,manitoba.please contact me at patrica350@hotmail.com

Karen

Hi,

My name is Karen aka sweetie, I have had Chron's for 5 years, and a year of symptoms before diag. To get a doctoer to listen to me was realy hard, I kept getting fobbed off with pain killers, fibre-gell, lactose everything but what I needed. I eventualy got admitted in an emergancy after taking picolax for a colonoscopy, turns out I am allergic to it.

I tried to tell them that I had problems with it before but as usuall they wouldnt listen to me. My first consultant was a compleate nob!!! so I found another one, not much better. Why dont they listen to us!!!!!!!!!!!!!!!!!!!!!! I have been on all the Drugs, steriolds, azathi, asacol, not much works. Have been in remision for 9 months while I was pregnant, but it is retuning again. What joy.

Kimberlee

Hi My name is Kimberlee and I am 20 years old. I was first diagnosed when I was 12 years old, but was able to hide it from my family and friends for two years. I was too afraid to find out why I was so sick, because my brother passed away when I was 6. I have been in the hospital 5 times since I was diagnosed. My parents have been great through the whole thing. They really support me a lot. I had to drop out of University during my first year because of a flare up which ended me up in the hospital for 3 months. I haven't had to have any surgeries yet, cross my fingers.

I am very greatful for this site, because everyone talks about their children and their wife or husband. I've always had the false belief that I could never have children because of my condition, at least not healthy ones, anyway. I am in remission right now, but have a big problem with remembering to take my pills. My boyfriend is there every day though reminding me. When I'm healthy, I just seem to take it for granted. I know I shouldn't.

Hi people I am 33 years old I just found this site today.I was officially diagnosed with crohns disease last year May 2001 by September I had had part of my bowel removed and home within 8 days. I am also newly diagnosed with hypothyriodism so have put on heaps of weight (dont like myself much at the mo).

I have been married to Nigel for 10 years and we have a son of 10 and a daughter aged 8. It is supportive to know that there are fellow sufferers out there and that you are not the only one cos it feels that way sometimes.

I have lots of animals and with 2 kids also, it seems to take up all my time looking after them.Well people best be off may all your bad days be short ones.
Love to you all
Take care
Love Su

SAM

Hiya, my name is Sam and I am a 25 year old female. I live on the Isle of Wight, England and feel very isolated from everyone else. I can't seem to find anyone who I can relate to.

I was diagnosed with Crohn's when I was about 20, but had had symptoms since I was 16 and was diagnosed with everything until they (the Dr's) eventually settled for Crohn's! I think at that time, I was put on Pentasa. I had my first op when I was 22. I had spent 18 months in agonising pain and kept going to my Doctor. I told him that I had never had this type of pain before, and his answer was well, he had never had grey hair before! I was eventually referred to the Surgeons and underwent and emergency op. I had a leaking abcess, which was removed as well as my appendix and 18" of small bowel. I was put on Budesanide for a while along with Azathioprine, Folic Acid and B12 inj every 3 months.

I thought everything was settling down although I had a lot of bloating, but not too much pain or any other symptoms . went to my now new and improved Consultant about this and he seemed to think that they may be a narrowing and sent me for a barium enema and follow through. 6 hours later they were still taking piccies of my insides and said something was wrong but they weren't sure. I was packed off to surgery again 8 weeks ago and when I woke, up I was informed that 4 feet of small bowel was removed.

I am now left with about 4-5 feet of small bowel left and am terrified of what the outcome of another op may be.

I feel I can't help myself get better in any way, and can't even be pro-active in regards to my symptoms cos, I don't have any due to the Azathioprine dampening down the effects and messing wiht the blood results. Before the last op, I felt relatively ok, and my bloods were all normal, so how come I was so bad inside. A lot of people seem to have had their colon out, but if anyone has got real problems with their small bowel, please contact me. The only person who is really great is my mum, but we end up screaming at each other cos she doesn't have any answers. I am hopefully gonna be referred to a IBS trained counsellor to try and stop thinking to negatively, but it is on my mind all the time.

I hope everyone gets a little comfort from this website, I am glad I have found somewhere I can talk. My e-mail is semmett79@hotmail.com

Julie

Hi my name is Julie (aka Ladytulip), I am 42 years old and have 2 young daughters (age 6 and 3). I live in Wiltshire, England and have had Crohns since 1989 when, after six months of terrible illness and over 3 stone lost, I had a hemi-colectomy.

Have flare ups every now and then, particularly at stressful times in my life. The last one coincided with the birth of my youngest child and moving home, leading to an anal abcess (pain of childbirth was nothing compared to this!) eventually becoming a fistula. Had to have surgery to solve this.

This illness can be very debilitating at times and I do have bouts of depression , but I have to keep optimistic for the sake of the children and life is too hectic to let it get the better of me. Unfortunately can't cope with work as well at the moment but maybe when the children are older.

I try to avoid stress as much as possible and have only had one flare up in the last 3 years. Take Asacol every day and probably will do so for the rest of my life but if it helps to stop the constant visits to the loo and the pain then it's a small price to pay.

Hi I am Edele

I will be 16 in a few days. I live in the USA and I have had Crohn's Disease since I was 11. At first I was diagnosed with depression, but my mom knew that wasn't it...then I was diagnosed as Lactose-Intolerant at 12...at 13 I was no longer treated as Lactose-Intolerant and was diagnosed with Crohn's. Last June (2002) I had 16 inches removed in an emergency resectioning...at the time of this surgery I was 14 years old and only 64 pounds! This year (2003) I am happy to say that I have bubbled around 115 pounds (a few pounds more or less each day, but a constant of around 115 pounds and I am 5'1 tall.

I love animals, music, and I have 4 cats.

Leeha

Hello all.

My name is leeha and I was diagnosed with CD about 12 years ago. Before my CD showed up I was a hard working stay at home mom. I have 2 kids ages 14 and 17. I was a very young bride and this makes being a "pretty cool Mom" easy.I was in denial for quite some time before I was diagnosed. I thought that diarreah, stomach pains and vomitting was due to nerves. (raising 2 kids w/hubby that was traveling at the time) Saw lots of doctors and they said it was in my head. They treated me with anti-depressants and tranquilizers. This did not help.

It was around the time that I was having alot of gyno troubles that I was finally diagnosed. It was a gyno who found CD when doing a hysterectomy.

I have found it difficult on my family and husband with this illness. I really do believe that it is a family illness.

I have had a total of 14 surgeries and 3 due to crohn's as resections and several others were minor ones due to crohn's. The others were not related. My recent surgery was an emergency. I ended up in Massachusetts General Hospital this past July with a resection. I was told I was very lucky and they managed to save me from a colostomy. I see my GI at that hospital and I swear they have the best doctors in the USA.

I had a scope done about a month ago and my GI said all looked good. He does want me to use questran. (what exactly is that supposed to do?) I take only the questran, lomotil, xanax and vicodin. When I go back to see him in a month or so, he may add another med.

I have not had a normal BM in almost 5 years but have been in what I call "remission."

I really do want to go out and work as my kids are older but, I have found that if I do not take some courses I will be looking forever for a job. I am always exhausted from this "D" and it's hard to keep a home, raise kids, be a wife and work outside of the home. It is something I still want to do. I'm plugging away at this everday.

I love the CCFA as I have found alot of support there. I have made many friends that have become a big part of my life. Even though we have never met.

I would like to give my email address for anyone who would like to chat thru email. leehabussey@netscape.net

I'm glad I found this site.

Love to all, and God Bless Us All.

Lisa

Dave

Hi My Name is David ---I'm 32 amd live in , Wellington, New Zealand.

Married, with a couple of kids. Ihave Crohns and AS.

Cheers

~KARLIE~

Hi, My name is Molly and I am the mother of a child with Crohn's. Her name is Karlie and she is 15. I found this site when I was looking for support groups for parents. There are many sites for the patient but little for the parents and siblings of the patient. I have learned alot today reading this site and I thank you for the info

We live in NY and my daughter has Aspergers Syndrom

. Double duty for this little kid. And I mean little. This summer she lost 17 pounds and is now down to 89 pounds. The doctors hope she will gain some back when she starts her meds. She is highly sensitive to medication so I know we will have many trials. She is having a colonoscopy on Halloween which will be her first. She has been very tiered and drain lately. I hope they find a cure someday so all of you who suffer will be at ease.

God Bless, Molly ltlcanoe@msn.com

Anissa

Hi, I'm 24 and from Warwickshire in the Midlands. I was diagnosed with Crohns disease 5 years ago but have been suffering from the symptoms for over 10 years. I first went to the doctors at the age of 18 after putting it off for nearly 4 years. My mum made me go because I had dropped to 7 stone and had started to bleed (which I thought was bowl cancer). The doctors were not convinced there was anything wrong and told me that my stomach aches were due to me being anxious and depressed, they then prescribed me the (very addictive) antidepressant Seroxat. I knew there was something more seriously wrong with me because the pain was still there, so I went back to the doctor and demanded to be referred. They agreed but unfortunately the specialist they referred me to just thought I was anorexic and refused to believe I was in severe pain. Feeling outraged I asked to see a different doctor, who luckily believed me. It still took many weeks after that to be properly diagnosed though because they still couldn't detect what I had. I went home feeling at a loss. In time I soon became so ill that I couldn't even get out of bed, my mum got worried and called the doctor to the house who immediately phoned an ambulance. I spent a week in hospital where they finally diagnosed me with Crohn's disease after numerous blood tests, stool tests, xrays and colonoscopy's.

When I was officially diagnosed I was put on steroids and then Pentasa (which didn't work for me). I was then put on Azathioprine which I have been on ever since. I was in remission for about 4 years but this past year I started to bleed again and get the odd cramp, this though has got better after taking steriod enemas. I do count myself lucky that I didn't need surgery, but if the doctors had continued not to believe me then who knows what damage could have been caused to my bowels.

As for the Seroxat - I become severely addicted to them (even though the company that makes them deny you can become addicted). I was totally hooked on them for 4 years but luckily, with the help of my supportive boyfriend and loads of will power, I weaned myself off them - it wasn't easy!

I hope to start a family in the next 5 years, but I'm a bit concerned whether to take the Azathioprine during the pregnancy or stop taking it altogether, leaving the risk of a flare up? I have spoken to my doctor and he says to stay on the drugs (but says there is a risk of the fetus developing club foot). I would really appreciate it if anyone has any advise on this subject.

Maxine

My name is Maxine, I am 38 years old and living in the North East of Scotland after moving up here 5 years ago from Cambridgeshire. I am married to Brad and have a 13 year old daughter called Kerri, 3 dogs - Molly, Millie and Ben and 2 budgies Sooty and Bob. I am also a girl guide leader and run a unit of 24 girls.

I was diagnosed with Crohns Disease 15 years ago. I started getting ill just after I got married and moved to Scotland first time round. This went on for months with severe diarrhoea; I went completely off my food; ulcers in my eyes, mouth and throat; constantly tired and I lost nearly 5 stone. I was also working at the time as a Personal Assistant. I ended up in an isolation unit in hospital as they suspected I had picked up a tropical disease from the Aircrew staff I worked with (worked at an RAF station). Finally diagnosed with Crohns and put on a huge dose of Predniselone, instantly felt much better and slowly my symptoms cleared (and the weight piled on!).

I had my daughter and was well for quite a while then my CD returned with a vengence. I was never hospitalised for it during this time though and took large doses of steriods which ensured I was constantly huge and ended up having to wear leggings and baggy tops to try and hide the weight! I was on a maintenance dose of Aziathioprine for many years.

Last year I became very ill, lost loads of weight and was in extreme pain and was rushed to hospital. Part of my bowel had perforated and formed an abscess. There was also severe disease in another part of my bowel. I had to have emergency surger to remove, in total, 12 inches of bowel including my appendix. Spent a few days in the ICU, had to have a blood transfusion as I was extremely anaemic before moving to a general ward then home. I spent 3 months off work. I now have a lovely scar right down my chest and abdomen. It is just coming to my 1st anniversary of the surgery.

Felt really well and got on with work - Information & Marketing Officer for a Local Enterprise Company. Cou