• Crohns Disease Your Experience

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Belinda | 06/04/2007 13:52:00

Thanks for joining us? Do any of you have experience of surgery for Crohn's Disease? If so how recently and what were the complications? Rgds Belinda

Valerie Armitage | 06/04/2007 14:34:00

I was diagnosed (finally) in 1990. I had been suffering with symptoms since 1979 following a cholecystectomy (aged 21). My GP said I had Collitis - there was nothing to be done but get on with it! Over the years my symptoms worsened and I was referred several times to the Gastrobods. The last event before my diagnosis - a locum GP told me I had to come to terms with the fact I was either stressed or depressed and it was really all in my head. A few days later I was admitted under the surgeons who carried out tests. The surgeon looking after me came to see me looking very solemn - he took my hand and sat on the bed and said he was sorry to tell me I had Crohns disease. I beamed!! Not the reaction he was expecting - but at least it had a name and was not in my head. I was referred back to the Gastroenterologist - who came to see me and appologised for missing the evidence that had been there for several years. Of course we were alone when this exchange took place. He was a Professor - and could not admit to this kind of mistake in ear shot of others! Following this the symptoms became quite severe - and I was started on all kinds of traetment that didn't always work. I had months of being tube fed and had to tolerate elemental diets before progressing to jelly and clear fluids. Steroid treatment always worked in the short term - but after several YEARS of having to take them my weight balooned even though I was suffering from malnutrition (just another humiliation - fat even though I didn't eat the pies!!). I could not to gout for meals or anywhere in fact. If I went shopping I had to know exactly where the loo was - I knew how many steps I could take befrore being incontinent. I could leave the front door and get to the car and it would be too late. Somehow I managed to keep a job - my employers were absolutely fabulous and made my job as easy as they could. These years were very bad for me - and I had many hospital admissions - always worse at the end of the year - always at Xmas. I had my son in 1986 - the only time I experienced NO SYMPTOMS was when I was pregnant. This apparently is commomm place for many sufferers. I ask mjyself - why can't someone do some research into the relationship between hormonal levels in pregnancy and the lack of Crohns symptoms. Of course it returned with avengence once I gave birth to Daniel. In 1992 (i think) I developed a fistula and had to be admitted for surgery. I was sited for a Colostomy and an Illeostomy - depending on what was found. Again I was referred to the surgeon who was instrumental in the diagnosis of Crohns - a lovely man! He managed a ressection and repair - for which I am grateful. Although at times my symptoms have been so bad I have asked for a bag - he took the time to explain why I should hang onto my gut for as long as possible, and I trust his advice. We moved up north in 2000 from the south. I was very lucky to be referred to a Gastroenterologist who was passionate about his work and the relief of symptoms his patients were suffereing. After all the usual treatments - Asacol, Prednisolone and lots of others I cannot recall, I was allowed a one off infusion of Infliximab. I felt incredibally well - I had energy (not a lot - but energy non the less) I had an appetite. I felt wonderfull. NICE said I could have no more - just the one! I again did the rounds of all the traetments - all of which worked well for a short period of time and then stopped working. My consultant then managed to get permission for me to have Infliximab every 8 weeeks for 2 years. This will finish at the end of this year. I have had good health - but I am worried about what will happen when I can no longer have the treatment. As time has gone on - it has become less effective - but I am still on my feet and able to function with some normallity. Crohns is a dibilitating degrading disease as any sufferer will tell you. Every day is a struggle for me - and those around me. But I am thankfull for the good days - long may they continue.

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Val | 06/04/2007 14:42:00

As I mentioned - I had a ressection and repair (a good surgeon who was skillfull!). I did in fact need Intensive Care for a while, and ther were a few hairy moments - but I felt EXTREMLEY well when I recovered.

Gemma | 06/04/2007 16:09:00

Hi ive had crohns for 3 years now and have been going through a bad time since the birth of my son in november(i do had no symptoms while pregnant) recently there has been what i would consider a worrying amount of blood loss. i tried for weeks too get an appoinment and finally i got one at that appointment i was told i would need hospital treatment for 5 days and that my 5 month old would not be able too visit i have refused too go in and am hoping the steriods im on start work. this is by far my worst attack too date although i have been in hospital with it before. i have never been given advice about diet just always told too find out myself what upsets it i was even told after a bad reaction too asacol by on consultant that they couldnt treat me if that didnt work. i have found that this disease is by and large ignored there are very few places for suffers too go for advice and help.

alison | 06/04/2007 18:13:00

I was diagnosed with crohns in 1992 after suffering for 3 yrs previously with what the docs called irrateable bowel when my bowel blocked they discovered it was crohns I have had 3 resections since then and a colatomy fitted (5yrsago) which really changed my life for the better my last resection was 11 months ago and I am still suffering the symtoms I have now been back on steroids for 4 months. As for my diet I eat what I feel like when I feel like it as I do not eat much at all. I still manage to work full time but it can be hard going when in a flare up or suffering the joint pains which uforunately accompany crohns in some people.

Jamie | 06/04/2007 18:53:00

F/Age 30 I began being symptomatic around the age of 16. By 17 or so, I couldn't make it to the bathroom in time. My family doctor & parents told me 'it was in my head'. 19yrs I became so ill I was missing work & food was going through me in approx 3 hrs. Finally, my family doc decided to do a scope & take biopsies. (At this point, a fellow co-worker had already told me I had Crohn's, while everyone else was in denial). My diagnosis was Colitus & was placed on the dirty prednisone. I was ELATED! I felt vindicated or something .. Horray .. it's not in my head after all. So, I left home .. And was relatively in good health for the next 5 years. Then I noticed a pain in my groin .. I repeatedly went to my GI (for 3 mths straight) All he done was put me on bi-wkly supplies of flagyl. At the beginning of the 4th month .. I went to the hospital for a CT scan .. (My bladder had slowly stopped working prior to this) .. After the CT Scan .. I refused to leave the hos. until somebody done something. As it turned out .. I had fistula's & an abcess the size of a small softball ... For the next year I battled with the fistuals & abcesses .. Having setons placed, then removed too soon .. Antibiotics that was discontinued too soon .. So .. I made the decision that I could no longer work .. I had lost 35lbs & just couldn't take care of myself .. I had to leave my home, my friends ... my GI who was a teacher @ this teaching hospital. I moved to a tiny town, with my brother ... I ended up making a desperate decision of having a temp. colostomy .. I thought I was going to die ... After that I began Remicade & 6mp (which I stopped taking as it made me anemic) .. The Remicade gave me migranes ... made me lose patches of hair .. a couple of finger nails and gave a brutal rash on my hands and feet that I still have today. Fast forward to today .. 5 years later .. I don't take an medication .. I refuse to. I had a food sensitivity & mineral test ... And when I feel things acting up ... I drink liquid aloe vera ... January 2007 I decided to make my colostomy permanet .. When I saw the surgeon he told me that in Oct. 2006 I tested positive for low grade dysplasia (which my GI didn't tell me about) ... Which reinforced my decision. March 06, 2007 I had the surgury. It turned into a 5 hr sugury as there was extensive scar tissue to be removed ... I'm still recovering ... My life has stopped for the last 6 years .. Unable to work & on disability.



Julie | 07/04/2007 09:10:00

I have had crohn's disease now for 18 years. Symptoms were severe diarrhoea, agonising pains and weight loss. After weeks of this and weighing 6 stone hardly unable to get out, my mum took me to the local hospital, where I was examined and told there was nothing wrong with me. I couldn't believe it! Luckily I had a great doctor who after further visits admitted me to hospital. After numerous tests and embarassments I was diagnosed with either crohn's or colitis, they couldn't decide which I had.My family and I had never really heard of these diseases, and were pretty much in the dark.It was just a relief to know that I wasn't going mad! Steroids were given in large doses to start, followed by other drugs. It was such a relief to feel a little normal again.In the past 18 years I have had numerous surgeons and specialists. One in particular was fantastic; explaining everything that was happening and determined to help. I had a resection when I was about 20 which was an awful experience, from the hospital ward to some of the staff. I remember sitting there after my op crying in pain because they had forgotten my pain relief drugs. It was only a kind patient who consoled me.After my resection I continued to suffer bouts which eventually worsened and ended up being advised to have an ileostomy. In 1997 I had the op and was so down for months after with this monstrosity stuck on me 24/7. The hospital refered me to some stoma nurses at a different hospital and they have been great.In 2000 I got married to a fantastic man and had a beautiful daughter.I was advised to have a caesarian and had no problems. In 2002 I went on to have my gorgeous son. My whole family has been brilliant.Since having my ileostomy I have had no symptoms of my crohn's. The stoma nurses asked if I would talk to other people about life with an ileostomy and I am more than happy to do so if it helps them in any way. I have visited hospitals and spoken to people on the phone.I would much rather not have an ileostomy bag, but then again I would much rather not have crohn's!

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Heather | 07/04/2007 09:41:00

I think mine started when I was about ten but went mis diagnosed as suspected appendixitus. I also used to get very pianful constipation as a child. I started my periods when I was 9 and they were always very haevy but then in my mid teens I started missing periods and had stopped altogether by the time I was 19. The hospital investigating kept trying to treat me for anemia, and severe diahrrea and asking how heavy my periods were and I kept answering that I did not get them. Eventually, under private health care, the crohns was discovered whislt investigating my non-existant periods. I was diagnosed as having had premature ovarian failure which broke my heart as I have always wanted children and still do. I had lost an awful lot of weight. I was put on steroid tablets to control the crohns. The tablets were red sugar coated. One night I got up to go to the toilet as usual and it was like niagara falls-I did not initially worry as I was feeling very tired. I then went again four or five times in an hour and the last time I felt so week that I crawled back to bed on my hands and knees. I did notice that my motions were red but put it down to the coating on the steroids. I rang my mum and she came round-she took one look at the blood in the loo and phoned the ambulance. To this day I do not remember the ambulance coming or getting to the hospital. What I do remember is coimng round three days later in intensive care to hear my mum being told that I had lost so much blood that if I had not called her when I did I would have been dead within the hour. I was bleeding due to internal ulsers that were bursting, bleeding, reforming and bursting again-a side effect to the steroids. Infact they never did find any steroids that I did not have an adverse reaction to. I put on an awful lot of weight due to being on the steroids that I am still trying to loose now and they also made me feel very depressed. After I came out of hospital I stayed at my mums for a while and during this time I started with the joint pains in my knees and my ankles and wrists. I used to be awake all night crying and screaming in pain. I have now had three resections done and have been told that if I ever need another it will be an ileostomy as I have not enough bowel left to rejoin. I have to watch what I eat as my stomach cannot tollerate high fibre or acidic substances which makes trying to follow a diet near impossible. I am now 40 and not currently on any medication and the crohns has been quiet for a number of years but the diarhea is constant and can be a bit of an embarrasment. I have to carry spare clothes and underwear with me at all times incase a sneeze or passing a buit of wind causes an accident. The diahrea has a tendancy to come on so quick that sometimes I barely make it to the loo on time but I am coping. I find it easier to cope with the crohns than coping with not being able to have children.

Elton R Powell | 07/04/2007 10:26:00

Iwas dignosed with Crohn's three weeks before my eighteenth birthday iwas 6stone 4 oz that was on the 28-02-1972 for eighteen months before that my G.P. was treating me with grumbling appendix and have been figthing the people who should know better ever since it would take to long to tell you any more.

jason | 08/04/2007 15:14:00

thanks for sharing. if anyone is interested, there is a crohns message board with lots of help and support at www.crohnsforum.com

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Michael Fischer | 08/04/2007 15:25:00

In 1987 (age 17), I went away to college in Pittsburgh, PA and almost immediately became sick. In the summer of 1988 I was diagnosed with Crohn's disease. However, treatment with Prednisone steroids during a flare-up would put the disease into remission for a year or two. Starting in the late 1990s, symptoms started getting worse and more frequent, and didn't respond as well to treatments including Prednisone, Asacol, and Pentasa. I was started on long-term immune suppressants - 6-MP. Health continued to decline, and in 2005 I began receiving IV infusions of Remicade. Treatments didn't help me at all, however, and were stopped at the end of 2005. I also went through a variety of antibiotics, such as Cipro, Levaquin, Doxycycline, Flagyl, and Xifaxan, to try to control the Crohn's, as well as one of the secondary symptoms of Crohn's, which is bacterial overgrowth in the small intestine. During the fall of 2006, symptoms became so bad that I was in constant pain, and could barely eat because sections of my intestines had become so narrowed due to scarring from repeated cycles of inflammation. I had surgery on October 10, 2006 (age 36 now) where 5 inches of my small intestine were removed where a fistula was discovered, and other sections were cut open and widened in a procedure called strictureplasty. To add insult to injury, the pathology report came back and they found cancer - Hodgkin's Lymphoma - in the removed section of small bowel. Lymphoma is a rare side-effect of Remicade treatment, so it may have been due to that. I've been in chemotherapy for the last 6 months, and a full cure from the cancer is expected. I find it ironic that they can cure my cancer, but not my Crohn's. Fortunately, my Crohn's symptoms have been much improved since the surgery and I'm off all meds except some Immodium to control Diarrhea.

Christina | 09/04/2007 19:32:00

I was diagnosed in 1988 after a few false starts where it was mis-diagnosed as ulcers, random abscesses etc. I walked into my surgeon's consulting room and he took one look at me and diagnosed it on the spot! Since then I have had 3 resections, an ileostomy in 2000, a proctectomy in 2005 and last week another resection of the remaining small bowel as for the last year it had been leaking internally and causing abscesses. I have tried lots of the drugs. Steroids are very effective but I suffer with the unpleasant side effects. I tried Azathioprine and Intramuscular Methotrexate last year to try to get the bowel to heal without further surgery but it just couldn't do the trick. The ileostomy was the best move I ever made, put an end to years of pain and embarassment and I got used to it in about 2 weeks. I have been particularly fortunate in my medical support - both my current and previous (retired) surgeon are great and my medic consultant is fantastic. They are flexible and informative and involve me in all the decision making so I never feel like it's being done to me. Hope to be off all the meds once I can get off the post op pain killers, though my medic has put me on Adcal to boost my calcium levels given all the steroids I have had over the years so I think that's probably a good long term bet, and the jury's out as to whether a maintenance dose of mesalazine keeps the Crohn's in remission so I might stick with that. Fortunately I don't let it get to me and I can work full time, though it takes a bit of teeth gritting sometimes, but I find it is important to me to live as 'normal' a life as possible, however challenging that might be at times.

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Geoff | 09/04/2007 23:11:00

In 1978 I was in my shop when I suddenly experienced incredible pain and saw many coloured lights - I found out afterwards I had a burst colon. Was admitted almost half dead. This after my GP had treated me for nerves - He had the breakdown - I had Crohns - Helpful!! I have since had 3 or 4 major stomach ops to remove inflamed small colon - after a year of not feeling well I spoke to specialist who said Oh yes you need B12 injections why did you not say earlier!!!!!!!!!!! Since then I have been to a specialist Doctor for DHSS who said would get me signed straight off - should never have been sent there as had crohns. but nothing ever happened and I have suffered with crohns since 1978 and had had to keep working as all I got was £34 because my wife worked!!! Big Deal as usual. I have managed to keep going, and with the help of the Crohns Disease Association finally got a Disabled badge for my car - and from the council a key for the disabled toilets. NO-One TELLS YOU THESE THINGS!!! I am now 61 and have still to work as not always been employed and built up debts because the DHSS etc dont give a monkeys because it is not a RECURRING DISEASE - 3 or 4 times since 1978 is NOT recurring!!! Wow God knows how bad a recurring problem is!!Unless someone has crohns they CANNOT understand the feelings of complete exhaustion which I get and the totally deenergising feelings I have to overcome to keep working. Crohns is a vicious disease that comes and goes and some days I am quite normal then the next I am down down down! How the heck am I supposed to keep jobs like this?? Anyone else in my position has my UTTER COMPLETE SYMPATHY, Cos no one else seems to care a fig. It would be good if the Top people suffered so they could appreciate it and would then put proper schemes into action. In gereneral the specialists have been excellent - the lasat time I went in I was home only 1 month - I had to get back to work to pay mortgage etc. The NHS Nurses are a hardworking, harassed bunch of overworked, underpaid slaves and do a fantastic job ib all but a minor few and I happily applaud them for their efforts. I now take pain killers, lomotil, ones for arthritis, antidepressant for arthritis etc - about 8 - 10 in all and must rattle but how can I stop taking them? The previous person, Christina, said about leading a "normal" life YES!! and all this with No help from the government. A Note - I had a temporary bag one time while the bowel healed, I found it great my health as best its been for years but the discomfort was a bit much, every time I tried to change the bag my bowel worked overtime!! YUK! and one time in a car park aftera very tiring journey the bag came open launching a whole bag all down my legs! NO LOOS ON THE TRAINS!!! Who cares!!! No-One. In spite of these problems I can still outwork younger people and have very, very little time off as money problems drive me to get up regardless!

MarJo-Ohio | 12/04/2007 04:44:00

Before September 5th of 2006 I had never even heard of Crohn's Disease. For a few weeks I was experiencing pain in my lower right side but I dismissed it as minor. Well on the 5th of September I woke up and thought that I was giving birth. The pain was intense and though I could still function I went to the ER. After 6 hours and several tests the doctor informed me and my family "You my friend have Crohn's Disease." We were sent home to digest that information and then report to our family doctor the following day. Well she felt that the ER doctor was wrong and stated it was my gallbladder but after a referral appointment with a GI doctor and a colonoscopy it was finally diagnosed. She put me on Asacol and told me to come back in two weeks. However, during those 2 weeks the pain was unbearable. I lived in my bedroom while life went on around me. My children were functioning, my husband managing the house and my parents doing everything they could to make it better. I wasn't eating therefore I wasn't going to the restroom. Finally, after the two weeks I went back to the doctor and had lost 20 pounds and was dehydrated and admitted into the hospital. After a CT scan it was determined that I had micro perforations in my small intestines and needed surgery. I was transported by ambulance and surgery was performed. However, when I woke up life was forever altered. I was given an ileostomy for the infection in my intestines was so severe that 15 inches of my bowel was removed and the infection was so great that they had to leave my entire abdomen open to close from the inside out. Recovery was difficult but I still had support. But living with an ostomy was brutal. It wears on you mentally. You feel as if you are half- a person. But man could I eat. I eat everything that I wanted because it just went right through me. Finally, on January 12th I had my closure surgery and was looking forward to life with Crohn's but then an abscess formed and I was readmitted and had another surgery. I'm now am at home with a large wound and have home health caring for my wound. I am taking Prednisone to jump start my bowels but will be off them in a week and I am not able to start taking my Entocort until all the surgical stuff gets taken care of. Since all this had occurred I have lost my job (because I didn't ask for adequate leave of absence and my friends no longer call and were actually mad at me for being sick so long and not returning to work sooner. It is my family that has been remarkable but they don't know the pain. So I contacted my CCFA and have attened a conference learning all I can about this disease and reading anything that I can get my hands on. I am now trying to learn what I can and can't eat and what my limitations are. I hope to get back into the work force but need to regain my mind and body.

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MarJo | 12/04/2007 04:45:00

A remarkabel support group online....www.ibdliving.com

Linda | 12/04/2007 10:05:00

I do not have Crohns but my daughter has. From the age of 13 to 26 she was treated for IBS!! At 26 she had a resection. At 28 an ileostomy. That was the hardest thing for me as a Mum to be shown how to look after her and her ileostomy. My perfect daughter altered for ever. She is 40 this year and suffers terribly both with the Crohns and joint pain. She hasnt worked for many years and never will again. This disease is horrific. I feel anyone who suffers from it has to be incredibly brave to keep going in any form of normal life. Lets hope that sooner rather than later the medical teams learn how to control and cure it once and for all.

Dom | 17/04/2007 12:55:00

Hi my name is Dominique and im 22 and have Crohn's and an Ileostomy I was diagnosed when I was 17 just a few weeks before my 18th birthday. I first came aware I had a bowel problem I had Diarrhoea, fever, rectal bleeding, very bad pains in the tummy area and rapid weight loss. I kept going to my doctor but they didn’t think anything was wrong with me they though I was doing it to myself, So cause the doctors thought is so did my mother. Even though I was bringing everything I was eating and drinking back up she would still make me eat full meals. Then she would sit in front of the loo door so I couldn’t go in their and be sick or use the loo. Things carried on like this for 6 weeks in this period I lost so much weight I was in a size 16 clothes but soon went down to a size 6. I kept on trying to tell my mom & doc's I wasn’t doing anything to myself and that I was really ill but they wouldn’t listen. Then on day I was being sick but this time I was bringing up blood and I knew this wasn’t normal so I had an emergency appt at the doctors. Then all I can remember there is going in to the doc then passing out. Then the next thing I really remember is waking up in hospital and being really sore to find out I had an operation. Then I saw this bag stuck to me and I freaked out I wonder what the hell it was. So when I got told I had Crohn's and they had to do an op on me because the bowel was so diseased I was in total shock. I never heard of crohns let alone an ileostomy I was so upset that I had this done all I can remember thinking my life was over. After all this had come out I was telling the truth and I was doing it to myself. My mom kept on saying sorry and wish she would of believed me in the first place then maybe it wouldn’t of gotten this far. Anyhow I had recovered from my op and was able to come back home. I was still weak and still coming to terms with what had happened to me. It didn’t take long for my mom to go back to her old ways with me. She would call me names cause I had a bag, and cause she DIDNT like the smell of my bag when I empty it down the loo she banned me for using it. So between the hours of 9pm to 9am next day I wasn’t allowed to empty my bag!!!! She also banned me from eating or drinking after 7pm and I had to go bed at 9pm and I wasn’t allowed my TV or anything on. They would take the plug off all my stuff so I couldn’t watch it. As well as that I was still paying rent money even though I was off sick and I had to pay the full amount I did before I went off sick. Even though I paid her rent money I still had to buy my own food cause I had to change my diet she said cause I wasn’t eating what they was then its my problem so I had to but my own food !!!! I really didn’t think this was fair but I kept my mouth shut because I know how angry she could get and I didn’t want to start anything. So I was getting that fed up with her and the way she was treating me. I planned to move away and go and live with Darren he was a rock for me through the whole op and after the op. He was very angry with the way my mom was treating me so he was more than happy for me to move in with him. That night I left home I can remember I wasn’t going to tell my mom as I know she wouldn’t let me go. So I was on the phone to Darren but come 9pm she took it off me and everything else went. Then my mate whom knew what I was planning to do txt me. Saying I so can’t believe you are moving in with Darren ect... My mom went so mad she came in to my room and she was calling me all the names under the sun and she hit me in my tummy where I had my op. So I didn’t sleep that night and I packed all my bags ect and hid them in my room. Come morning she went out to work with my step dad leaving me alone at home so I got all my bit and left since then I haven’t looked back and imp much more happier here than I ever was at home with her. Since being down here my crohns hasn’t got much better I have several other op to have more of my bowel and adhesions. I have had loads of admissions in to hospital with flare ups. I have tried loads of different meds that haven’t worked for me. So at the moment im on a very high dosage of steroids that go from 60mg to my maintence dose of 20mg. Imp currently going through a flare via the rectal stump and im due to have it removed within the nest few weeks. I know if I do have this op I will have the ileostomy for life and I know it’s something I need but I always though I would be able to have it reversed. Anyhow that my story lol sorry it goes off track a bit with the mother issue lol thanks for listening

Jo | 17/04/2007 18:15:00

I don't want to go thru the whole crazy story, but to make it short: I began having pain on my left lower quad in 1992. The initial onset resulted in various tests and misdiagnosis. After about 2 yrs, I began have partial bowel obstructions several times a year. They still couldn't find the culprit but had several guesses which did not include Crohns. Finally after about 7 years they found a stricture and began testing for Crohns. The tests were posotive. I have had 8 inches of small bowel removed, gall bladder, 4 hernia repairs (soon to be 5). All of this has been related back to CD (and weakened abd. wall from surgery). I take Pentasa and Hydrocodone at present. Cannot take much prednisone as I'm diabetic. I am much better with treatment but still have flares now and then.

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Amy | 18/04/2007 15:38:00

I was diagnosed with Crohn’s Disease in 1999 after several months of severe constipation, rectal bleeding and bad abdominal pain. I was in and out of the hospital and after a colonoscopy, I was diagnosed. It took a few months but once the GI was notified that the disease was in my paternal line, he knew what to look for. I think the first half of my disease was very different from what it is now. I would go six to seven days without going to the bathroom and would get very ill. I managed a few hospital trips and took some medicines but I had no respect for the disease at that point in my life. I didn't appreciate just how bad it could get. I was lucky enough to go in to remission when I became pregnant with my first son. I lived a great life filled with Taco Bell burritos, salads, pizza and no right side pain! It was phenomenal. It lasted through my second pregnancy, a total of almost four years, and then reemerged 11 days after my second son was born. The reemergence has not been pretty or mild like the first go round. I have severe diarrhea, pain, bleeding, nausea and have had two partial blockages in the first year. I have taken Entocort™, Asacol®, Prednisone, Imuran™ and am currently taking all of them but the Entocort™. I have a stricture from scar tissue that is near my terminal ileum. I had a CAT scan that revealed scar tissue bands have encapsulated my appendix and drawn it up to be flesh with my small bowel. The scar tissue poses a problem for me because when I lift my kids or push heavy things, it pulls and hurts as much as the spasms. The spasms have been getting so bad that it feels like I am in childbirth all over again. I have resigned myself recently to the fact that I have to take the medicines. I put up a fight at first and thought I could get away without them. A recent horrific flare and week long hospital stay has convinced me otherwise. I inevitably will have to have a small bowel resection to remove the area that is strictured. Unfortunately for me, I have the disease throughout my small intestine and in my colon as well, so surgery will not be beneficial in removing my disease. Fortunately though, I have found a GI doctor that I trust and feel comfortable with. I am just trying to do what I can to be home with my family and out of the hospital. This disease takes me on an emotional roller coaster and most times I feel I am forced to make "the best of the worst" type of decisions. I just finished a course of Prednisone and that is evil medicine. Pure evil. I am still on Imuran and Asacol and dont think it is doing much of anything. Going to ask doc for Humira on Friday!!! Best wishes to all! Amy www.IBDLiving.com


Jo | 18/04/2007 15:55:00

I was asked to explain my comment that not all doctors listen to my input. I have 2 examples. The first is ER docs. I actually had one doctor in the ER that, having been told I have CD and have had many partial obstructions, wanted to give me an enema and send me home. He didn't want to call X-Ray people in during the night to confirm my claim. Only the word "attorney" got his attention. I did indeed have a partial obstruction of the small intestine and wound up in hospital for 8 days. The other example is that my doctor of 25 yrs. has recently become very busy due to the death of his office partner. It has been increasingly difficult to get into him when you are feeling ill. I have been shopping for a new doc. Some that I have dealt with were too anxious to treat just my CD or just my diabetes, etc. I have finally found a doctor now who can see the big picture and how one condition can effect another and realizes that meds for one thing can cause problems with another, i.e. Prednisone and blood glucose leavels. Thanks for the interest. I will add that I live in a rural area and I believe I am one of only 3 people in this area who has CD. Not all of the docs have a lot if experience in dealing with my problems.

Joe from NJ | 18/04/2007 16:24:00

Hello, I am 34 and married I was diagnosed with Crohn’s disease in 1998 and diverticulitus in 2000. Here is my story. I was misdiagnosed with irritable bowl syndrome for about 5 or so years before I decided to go to a Gastroenterologist. My GI also thought I had Irritable Bowl but sent me for a Upper GI and lower bowl study to just make sure and found the Crohn’s Disease in my terminal Ileum and colon. So far pretty normal stuff. My GI started me on Asacol but I had a reaction to it (hallucinations). So he put me on Pentasa I handled that fine. I ended up going on Prednisone 60mg a short time later because I was having trouble in the bathroom. You know what I mean. This did not seem to help it just caused me to be irritable, bloated and fatigued. He then started me on Remicade in the spring/summer of 1999. But I think it was to late for it to have any real affect on the Crohn’s. Then came Y2K, (yes the year 2000) I will not forget that year. It started off great I got married to my fiancée Karen on Memorial Day weekend. But then it all went downhill from there (not the marriage). My mom passed away about three weeks after my marriage from thyroid cancer. That puts a real damper on the whole newlywed thing. And then a month later my father in-law passed away from lung cancer. They say stress can cause your symptoms to flare up I don’t know who they are but their right. I ended up going into the hospital for a week from Abcesses in my lower bowel. That is when they started me on Cipro and Flagyl I would end up being on these for about a year. This is about the time I started looking for a new Doctor, as the one I was seeing liked to leave the country for weeks at a time and I did not like anyone else in his group. During this time I was visiting the ER about once a month to help me get past the pain I was in. They did not know what else to do but give me a shot Demerol or Delaudid. I ended up finding a new doctor about 40 miles from my home. It is also when we decided that we would need to make him understand I was in trouble. My wife and I had a real hard time convincing him of my situation. He thought I was addicted to pain meds. It seems I didn’t show what I was feeling in my face or attitude somehow I mask it. That all changed when my wife called him at 2am crying because she could not stand to see me suffer anymore. I had surgery in November 2000. They took out about a foot of intestine from my Terminal Ileum back and a couple of other small resections. They also did exploratory surgery to uncover an infection that was surrounding my kidneys and would have caused me to go sepsis and might have killed me if it were not found. You should have seen the look on the Doctor’s face when he found out how sick I really was. They also found out that I have diverticulitus and decided that it would be best to give me a temporary colostomy to help it heal. That was reversed in March 2001. After that I felt great for a few years. That is until 2005. I was hospitalized in April 2005 for Diverticulitus. Boy does that have some teeth. Pain like I have never felt before. I could not hide that if I tried. I also found out that Diverticulitus can come back; no one ever told me that before. This is also when I found my new GI doctor. He is great he really seems to care. Definitely something I’ve not experienced before. Anyway it seems my Crohn’s has flared up again but at first I didn’t know. Somehow I did not feel it (no pain but a big infection). I started back up on the Remicade 10mg infusion but it didn't seem to help. We tried doubling the dosage but I had to stop taking it because I had a very bad reaction to it (Anaphylactic) and it is just to dangerous to try again. I was also on Entocort 9mg it helped a little but then it just seemed to stop. He tried to put me on Imuran but I had a reaction to it (Kidneys almost shut down). At my last colonoscopy my GI said it looks like I am need surgery again. I have almost total blockage in my Sigmoud colon and I show alot of infection in the area just past my terminal ileum in the large intestine. I am not into the idea of surgery. Who would be? I have tried tons of other stuff that I did not mention in this story but none of them have helped. As of late I am currently taking Cipro/Flagyl 1000mg each I have been on these for more than a year now and Prednisone 30mg for about 4 months. I have some bad days and some real bad days. But I keep trucking on. I have found a new GI out of NY (Mount Sinai) that decided to take on my case. I am a challenge and she thinks my problems with meds and the continuous flares might answer some serious questions about the gene'sn related and possible therapy. I don't mind being the guinea pig if it may help myself and others with this dreaded disease.

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Andy P, Brighton UK | 23/04/2007 11:51:00

I’ve answered all you questions – sorry about the length! - Tell us the story of your diagnosis. Who diagnosed you? When? How did you, your family learn about the disease? What symptoms or events prompted your diagnosis of Crohn’s disease or IBD? I was diagnosed with Crohn’s disease in 1990 when I was 22 years old. I was diagnosed after being operated on in a National Health Service (NHS) hospital in London – I had a right hemicolectomy to remove the end of the small intestine and the first half of the colon. The Crohn’s-like inflammation was confirmed when the removed bowel was analysed. The surgeon did not tell me I had Crohn’s, they told my mother a couple of days after the operation. I had experienced a number of ‘mystery illnesses’ since I was 12 years old. The main symptom was fatigue, confining me to bed for 2-3 weeks, with some abdominal pain and loss of appetite (very unusual for me). From 18 to 22, I also experienced regular acute bouts of vomiting and abdominal pain which were dismissed by my General Practitioners (GP) and hospital doctors as the result of drinking too much, taking drugs or eating badly (none of which was true). Six months before I was diagnosed I moved and changed GP. My new GP took my symptoms seriously. I started to lose weight rapidly and my GP got me admitted to hospital for a week. Tests were booked but not carried out. As I continued to lose weight (35lbs or 16Kgs in four months) my GP sent me back to hospital where I had X-ray and ultrasound scans. A mass was identified in my abdomen and I was booked for the surgery that lead to my diagnosis. - What physicians/specialists have you seen in connection with your Crohn’s disease , Ulcerative Colitis and other forms of Inflammatory Bowel Disease? Who do you see on an on-going basis? Who do you see but occasionally? I have seen GPs, gastroenterologists, surgeons and IBD specialist nurses regularly for my Crohn’s disease. Occasionally I have seen specialist (lower GI) dieticians and clinical psychologists to deal with specific issues related to my Crohn’s. -How did you, your family learn about the Crohn’s disease or IBD, from diagnosis and throughout the disease process? - Were there any resources you found useful? As described above, Crohn’s was only mentioned after my first operation. It was not explained in any detail until I asked questions in subsequent outpatient appointments and when I became ill again. The situation is better now with doctors. However, most of my information has come from the National Association for Colitis and Crohn’s (NACC), self-help books like Joan Gomez’s ‘Living with Crohn’s disease’ and from meeting others with IBD and exchanging tips and experiences. - How do you manage the disease on a daily basis? - Have you had to change your diet or lifestyle to cope with the disease? What support did you receive from family, friends, and medical professionals? I take my medication (Infliximab, Pentasa and Azathioprine) and supplements for osteopaenia and anaemia (calcium, alendronic acid, iron, vitamin C and folic acid). I eat a varied and tasty diet – generally low residue, reasonably low in fat and avoiding a small number of foods that my bowel doesn’t like. I do a moderate amount of exercise, take regular rest periods during the day and take care to sleep well. I take regular holidays and keep a close eye on my stress levels. I listen to my body and, most importantly, act on what it is telling me. I am lucky to have a supportive and understanding partner. Other family members are both supportive and worry too much. I have successfully kept the friends that are good for me and lost those who were not. I have spent a lot of time and used all my diplomatic skills and charm to build a good relationship with my NHS healthcare team – hospital doctors and nurses, GP and community pharmacist. - How did you and your family make decisions between the medical options available to you? I discuss option with my NHS consultant gastroenterologist and IBD specialist nurse. If surgery is necessary, I discuss this with the NHS surgeon who has operated on me five times over the past ten years. I do discuss options with my partner. Despite rather pointless and annoying offers of family members re-mortgaging houses and / or spending all their savings to pay for private medical care, I have stuck with the NHS. I cannot get affordable medical insurance, do not work for an employer that offers medical insurance and regular private treatment for a life-long would soon become extremely expensive, for essentially the same service. The only benefits of private medicine I can see is shorter waiting times. - How did you choose physicians? How did you decide which therapy route to undergo? What were the main triggers? There is very little practical choice within the NHS. I did ask for a ‘second opinion’ about 6 years ago and was referred by my GP – on the NHS – to a well-regarded specialist at a regional centre in London. I was given the option to receive treatment there, but at 75 miles and a five hour round-trip, this is not a realistic option when I’m ill and in need of emergency treatment, or if I need regular outpatient treatment or investigations. I am now receiving Infliximab. This has dramatically stabilized my condition and has given me hope of a recovery and getting back to work for the first time in eight years. Infliximab was first identified as the ideal treatment for my in 2001. Due to issues around licensing by the Department of Health, conflicting recommendations from the government’s National Institute of Clinical Excellence (NICE) and problems with hospital drug budgets, I only received my first dose of Infliximab in June 2006. Therefore, the route to this therapy was a long and tortuous one, where the decisions were not mine or my clinicians, but made by government officials and hospital budget-holders. I feel that I have been deprived of five years of my life, the government has lost out on five years of my taxes and the tax-payer has had to fund three operations, over six months of inpatient care and five years of incapacity and disability benefits.

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Val | 25/04/2007 19:21:00

Just to say - way to go Andy! Infliximab radically stabalised my condition - and it was the only mediccation I was on. See my story - the first one to comment. Sadly it is becoming less effective and only this week I have been put back on Prednisone to get back some control and hopefully avoid too much deterioration. I have been lucky with my treatment over the last 18 months after many years of multiple treatment failures. My consultant fought haed to allow me my current course - this will finish in 6 months. Then it will be back to fearing when the next obstructioin will hit, fear of any kind of travel plans etc.And fear that eventually I will not be able to work. I am luckier than most of the respondants - I have been able to work most of the time - only with the support of good employers with a flexible approach - but then I am worth it! I also still have my sense of humour! NICE have a lot to answer for - they seem very short sighted as far as cost is concerned. It is far more cost effective to treat with medications such as Infliximab than to not treat and deal with the higher costs of in-patient care which may include surgical procedures.

Marilyn Curtis | 05/01/2008 13:40:00

I have had 2 resections,the first in 1978and the second in 1986. Right now I have some serious problems with a flare up. I would like to know if any one has had the current remicade treatments and if so, how successful. I had 2 treatments years ago and they didn't seem to help. However,it was not on going, they were a couple of years apart.Iwas diagnosed in 1978 when I was 38.

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