Your Crohn's Stories: July - September 2007
Here are the latest contributions from our visitors. Feel free to read all of them, and if you can provide your feedback or contact those who want to hear from other Crohn's patients.
"My name is Patricia! Dr. told me i had ibs at age 19, spastic colon, nervous stomach. Yeah okay try these medications and change your diet! Dealt with that till i was 22-23. Then came down with the EBV virus for about a year. I think this is how i developed crohns since it doesnt run in my family. My dad and my sister (ibs) have issues with bathroom but no crohns.
The year 06 age 24 i knew i needed help and i knew it wasnt ibs. Things didnt digest, came out whole, sounds of a war zone in my stomach, More trips to the bathroom and bathroom maping the neighborhood, diaherra, bloating, burping, gas, nausea, etc.. Nov 8 06 positive ASCA antibody test for crohns but not good enough evidence. The only blood work that came back postive 3 more times antibody test levels jumping higher and higher and promethius labs. No other elevated blood tests. Colonoscopies mild and acute non specific chronic inflammation!!
Dr. just started putting me on different medications. Entocort, predisone, pentasa, asocal, imuran and being hospitalized 5 times so far from Dec 06-till Sept 2007. SOl Medrol or predisone was the only thing that helped me. Lost about 20 pounds. Having 4 colonscopies, 3 EGD, ct scans, video capsule, barium swallows, i mean etc... Nothing, couldnt find nothing. Dont have bleeding, no high grade fevers just diaherra 4-12 times a day, weight loss probably from poor diet, hair loss, eye inflammation, ankles, knees, and hip pain, burning in the but, mucos. I have went to 3 different doctors and finally the plan was to get off all medications and let yourself flare get as bad as you can get and repeat all tests.
Finally September 14, 2007, 7 biopsies finally found crohns end small bowel and whole colon. Im excited finally im not nuts! Good feeling to know that im taking medications to help me and not taking them to be some guniee pig to see if this helps or works when they are really not sure if it is IBD OR IBS. Now tapering on steriods and on pentasa if that doesnt work going to get the humara shot!
I would like to stress to everyone just because you dont have the common symptoms that is typical of crohns dont ignore them. Keep going to doctors until one is smart enough to listen and figure it out. A blood test wasnt good enough they had to have evidence of it something that i knew was always there! Please anyone feel free to write to me Trevordog719 -at- aol.com love to hear other stories!"
Thank you for sharing, Patricia. If anyone would like to contact her to share stories, the -at- above is just the usual symbol when you're sending the email...it is written that way to prevent spam.
"Hi My Name is Lori I was Diagnosed with Crohns in 2003 . Iwas so Sick Felt Like a bad Flu Actually started bad Thanksgiving 2002. I ended Up In The Hospital January 2003 at first they werent sure went to one doc put me thru all kinds of yukky tests had a dream God found me A doctor and He has saved my life. They Put me on prednisone 20Mg A day asacol reglan for gastric paresis thats a life saver and tigan for nausea . then they put me on Entocort 3 Mg 3 times A day .
Thank you It has my crohns under control I do have A new Problem Rectal Pressure had a colonoscopy every thing basically looks good . Anybody Have That pressure Feels like ya gotta go but u Dont yukky Feeling it is getting Better since He uped My Fiber gave me Cipro and has me eating Activia 3 times a week has live culters acidophulus ...
Had two Different Opinions Also I am On A low Dose Of Valium the proctologist thought it was a fissur I think he was wrong cause it did not hurt to go it hurt not to go my gastro Doc said bad bacteria and had me on cipro and activa that seems to be helping ..
God Bless all of u who have this I always put God First this is my trial and Im keeping My Faith He has never left Me God is the only one who Gets me though my trials ... anyone who has crohnsand wants to talk Email Me BLhiles1104 -at- aol.com."
Thank you for sharing, Lori. Keep the faith!
"I am almost 59 years old and have had Crohn's disease for about 25 years - but I didn't know what it was until last year. I had severe abdominal problems for so many years - constant severe diarrhoea, pain, bloating, weight loss etc - but put it down to irritable bowel syndrome as various tests I had didn't show anything specific. I just learned to put up with it and control it as best I could by watching what I ate (very little fatty, acid or spicy foods,not too much fruit, salad not more than one day running, among other things), getting plenty of rest and exercise etc - I just learned what to do by trial and error.
Then at the beginning of last year I was diagnosed with lymphoma - I had a tumour in my abdomen the size of a melon. It was the CT scans I had during treatment that showed the Crohn's disease - and of course my oncologist was not surprised to discover it. Treatment for the lymphoma has proved effective and a PET scan earlier this year showed no sign of cancer cells - and the bonus is now I am on medication for the Crohn's I don't have any problems with that either. I take 3g Pentasa per day which is very good and no side effects.
Only trouble is I tend to put on too much weight now everything I eat doesn't go straight through!"
We're glad to hear treatment is going well for you.
"HI my name is robyn i,m 52yrs old and only found out in june that i have crohns.like others ihave been sick for over 3yrs.Ihad to travel over 230klm to find a doctor to find the disease and treat me .I spent 2weeks in hospital having tests and different treatment.I have been in and out of hospital over 8times since but hopefully now i,m on the mend.i,m on mesasal ec.Imuran,prednison,durogesic patches for pain,plus i,m having infusions of imflaximax.
i,m having my 3rd and hopefully my last next week as my husband and i have been travelling460klms every 2wks.to see doctors and have treatment.I,m also on iron tablets my problem is i also have 5 blockages in my small bowel.i can haved diarerihia for several days then be constipated.hopefully all this treatment will fix this. i find it impossible to eat red meat any more.I want my life back /we retired 5yrs ago because my hubby has had melanoma cancer in his leg and also spurs in his back and heels.
Now i,m putting him through hell with my illness.Ifeel so tired all the time,but have trouble sleeping,i have terrible hot flushes,and dizzy spells, and now i,m having trouble with my eye sight if this dosen,t work they may have to operate to remove the blockages ."
Thank you for your story Robin. Hang in there and stay strong, try to keep a positive attitude. Read some stories and hear what others have to say. Perhaps they can be helpful for you.
"My Name is Kelly and i was 24years old when i was diagnosed with CD I am now 30years old so its been 7 long years for the past year my quality of life has been the best its been since i knew something was very wrong it all started with sharp pain in my low intestine and night sweats and blackouts oh it hurt i went to the doc and was sent home twice cuz ya know it was all in my head so it was time to get a second opinion and thankyou Dr. Dick for figuring it out although i knew what was wrong it was only the beginning OMG all the steroids, pentaza,asacol,buscoban,and worst of all denile so for 7 years.
It was hell for two reasons denile and not being properly medicated and a unhealthy lifestyle and that i needed to learn in time so tired of being sick and tired i was on a mission to feel good i just could not live my life like this anymore so first thing is find a new Doc which i did Dr. Provash Chandra Ganguli my hero I LOVE HIM! for the past two years we have worked together to put me into remission and we did the following i was a smoker and a drinker till then till i smartened up and excersise its a must for me anyhow so i was steroid dependant so it was either surgery ouch or one more shot on meds.
I choose Remicade and Imuran for my treatment and with in 12 weeks i felt better than i ever had in 5 years my life was back and its been 1 year and i still feel great and its working for me so far but that can change but i'm taking one day at a time i value my health now and i do everything possible to not take anything for granted."
Thank you Kelly, you have a great attitude. Keep it up!
"My name is Liz and I have had Crohns disease for 40 years. I have had multiple hospitalizations for TPN therapy, several surgeries for resections (total of 5). I was diagnosed at the young age of 22 and have become very knowledgeable on every aspect of this crazy disease.
I started off having rectal bleeding and since I worked in a hospital I knew that this could be big trouble, but as usual I chose to shrug off the problem. WRONG thing to do. It took them 3 months to finally tell me that I had crohns disease and was admitted and stayed for 6 weeks of TPN theraphy and ended up having surgery the first of many recections.
I was every med known to man and yes some heslped but some just made me feel awful. I learned to take the good days with he bad days and trucked on. I still worked in a hospital and always ended up a different one until my year when my insurance changed and I hadto use the same hospital that I worked in. I dealt with it. A few years later I had the fianl surgery (ileostomy). The doc tha tdone my last surgery was a doll, he told me I had to name my stoma and I call him George.
I cannot have anymore surgeries due to the fact that I have little bowel left in my body. Actually it was a blessing inside its self. After all the meds and all the surgeries I have had, I now have no pain and eat almost anything I can and enjoy my life so much more than ever. I wish I could have had this before all the pain and meds were gone through. I do have to be careful in the heat, I cannot deal with that much as I grow older and I have learned that life is what you make it. I have had my shares of problems and fears along the way, but its much better than being dead and 6ft under. I had the blood clot scare of my life and almost lost my right leg over it, but with the grace of God and 2 damn good docs they were able to reroute the main atrey in my leg so I would not lose it. I have the ugle scars to show off.
In all this both of my husbands died and left me a widow, and I have lost jobs due to my illness and I have decided to become a volunteer for the Crohns and Colitis Foundation and a spokes person for the American Ostomy Society. I refuse to allow this to end my life and I will fight until the day I die with this crazy disease. My neice was just diagnoised with Crohns last April and I have been helping her deal with all the unknowns that you must encounter daily with this disease. I am still in the medical field and I will remain there and I have met alot of angels along the way and make alot of friends.They all help to keep me strong and keep my feet on the ground. The only thing I can say is: Listen to your docs and ASK questions, no question is silly if you don't know the answer.
Always ask for a second opinion, and keep smiling. If you are on large doses of steriods, please take calcium supplements to make up the difference. my teeth are terrible. Look forward to arthitis in your old age and I make jokes about it when ever I can. Its helps me make it through some days and nites. Learn what works for you, I kept a journal for 2 years and I read it at times and it makes all the difference in the world now to me. Never give up, things will get better. Let it control you for a while but then you can make a deal with the body and let it know that you need to be in control and somehow it all will work out. Remember, God never puts anymore upon you than you can handle. Keep him in your heart and things will work out for you."
Thank you Liz...very good advice!
"i am a 24 year old female . i have only recently been diagnoised with Crohn's . I have found it really hard to understand and cope with. the main issue for me was being put on steriods,my face and stomach swollen up that much i felt like and looked like a different person. 2 and half stone later and i was feeting so depressed, i felt really alone. My sister has been a great help she is really the only one that has done any research it the disease and because of that she knows and understands what i am going through.
something i wish my husband to be and my parents would do Been off the steroids now for 11 weeks and already my symptoms are back. as i am new to this i wasn't sure what to do.I was thinking well is this the illness is this what i have to go through for the rest of my life can anything be done to help me. then i remebered the helpline the hospital gave when i was last there( i phoned and spoke to christine liddle)she was great.
i had phoned the right women told her how i was feeling and that i was worried. and right now i am waiting to hear if i can get an emergancy appointment this week . as my next check up is not until 4 september 07 Dont think my asacol has been working as it just comes out he other end ( dose that happen to anyone else)."
Thank you for sharing...if anyone has any feedback on Asacol let us know.
"I am 30 years old and have had Chron's Disease since I was 22. I have been off and on all the meds out there, including remicade and now the humira shots they are not fun or easy to give to yourself and the Doctors cannot guarantee that they will work but this is my last hope before I will have to go in and have my entire large intestine removed and then I will have to have a collectomy bag I beileve that it is called for the rest of my life.
The Doctor also told me that after this surgery that my small intestine will have to be removed a little at a time and then I will no longer be able to eat normal foods and I will have to live the rest of my life on IV'S. What kind of a life is this??? I have read several of the letters that are posted on this sight and I have to tell you all that I truly understand what you are going through. I have what seems like the flu 24 hours a day 7 days a week most of the time, I have been in and out of the hospital so much that I know most of the nurses on the third floor by name and they also know mine, I also know most of the ER Doctors and nurses. I have had to have my appendix removed, as well as my gall bladder, then I had to have a green filter put in to make it what Doctors claim impossible to get blood clots as it will catch them and break them up? (This was a wonderful idea, but not working and now that it is in place, it must stay.) I had to have an emergency surgery that makes it impossible for me to ever have children, which at one point was a dream.
I have such severe pain in my back that stems through to my chest that at times it hurts me to move as well as breath. My white blood count has dropped to the point where I was placed in isolation in the hospital and no one could be around me without gowns, face covers, and gloves. And I have had countless blood transfusions because of the amount of blood that I have lost in the diahrea. I have cramping so badly that it takes my breath away and I have nothing that seems to help it, some people say that a warm bath will ease the pain?? I have found no help in this?? If anyone knows anything that helps I would greatly appreciate advise??
I have only 6 months before the Doctor will make the decision if I am going to have to have a surgery that will put me out of work for atleast 6 months? I can't afford to be off work and I fear the thought of another surgery expecially one that I don't even know will help. I have cirrosis of the liver, a heart condition, and other problems with this and I don't want to keep thinking about this. Any advise is helpful. Thanks so much." Nan
If anyone has some helpful advice for Nan, please send it along, thank you.
"I'm Dana, i'm 17 and i was just diagnosed with crohn's about a month ago. it started out about 4 months ago when i just got the worst pain after every time i ate anything. it was only when i ate. so finally in may my mom took me to my doctor and they thought i may have acid reflux or an ulcer. so i was taking medications to cure that. it wasn't helping i still had pain after i ate. so i went to the hospital a month later and i had a hida scan. turns out my gallbladder needed to be removed. so a week later i had gallbladder surgery. during my surgery, they found inflammation in my small bowel. my dad has crohn's disease, so they figured that's what it was.
i never had any symptoms of crohn's though, no diarrhea or anything. so they put me on some steroids and started me on a few different medications. 2 weeks later i ended up back in the hospital from so much pain. then they started me on prednisone. that medicine was not helping me later. last week i went back into the hospital and turns out i had a bowel obstruction. now they are starting me on remicade because i seem to not be responding to any other medications. im only 17 and was so healthy up until a few months ago.
its very overwhelming and hard to deal with. i am on a liquid diet for 2 weeks to rest my bowel. i haven't ate in a week either. this disease is very very frusterating and i feel so bad for anyone who has to go through this."
Hi Dana, hang in there. Thank you for sharing your story with us.
"Hi all I hope this cheers you up! I'm 56 and had my first surgery the day I was born! (small bowel was telescoped/twisted) Then again at age 18 months, (some removed) Then again at age 8 an emergency appendicectomy after a cross country run in the snow kicked something off, then I had peritonis so more resections after that. Then a year later I had my first obstruction and more small intestine removed. But back then, no one knew about Crohn's then so my symptoms from then on were largely ignored. So I ignored them too, as much as possible. To me it was normal service. Our school was a British Public school. You didn't complain. (You didn't complain at home about the bullying either).
I'd run home from school in the lunch hour to use the toilet as the kids would make fun of me at school because of my constant diarreah, and then I would run back again at 4pm and run back again for after school activities . (I lived 2 miles away so it was just possible) Then when older I would bike there and back. Back then as there wasn't immodium or similar meds.
I would save my pocket money and buy that thick white gunk called Mist Kaolin and Morphine from Boots until they refused to serve me. It gave you a warm glow in your stomach and blocked you up for a while so you could go and see a film or go fishing or something without needing the toilet. So I got on with it and being very thin and underweight I wasn't much good at sport, (except for long distance running - see above) so I learned the guitar and got pretty good at it. So I left school early and made a career in music and then graphic design, and I even learned to fly when I was 35 and got a private pilot's license. Now I'm a web designer and have been happily married for 34 years. And Crohns? After several emergency hospital visits over the past few years I was diagnosed only last year! I was told I have had it for many years.
And now with the drugs (first prednisilone now azathioprine and Questran) my symptoms have improved enormously. I have learned not to get so stressed as I did once, (that was a major contributory factor) and also to rest more and exercise as much as possible. I had (and still have) many of the problems that you describe in these letters and my surgeon says that I only have 1 metre of small intestine left and that's shot to bits. I have lots of other complications, but I sort of guessed that years ago. And I know the chances are next time I obstruct it will be pretty serious so I am not spending too much time thinking about it. So the point of this is this: Don't let the Crohn's grind you down, you can rise above it all and be stronger than many people."
What an inspiration, thank you for sharing.
"I was diagnosed with Crohn's back in 2001 ( was 21 yrs old). I had severe abdominal pain, extreme weightloss. My family doctor at that time thought I had appendix. She sent me to the GI and he did various tests. It showed I had crohn's. He put me on Prednisone along with other pain meds and antibotics. I was on prednisone for 4 months. Everything was in control. I had another flare-up Jan 2002. After that I haven't had any flare-ups until now, May 2007. I was 26 weeks pregnant with my first born due in August 2007. I couldn't feel her move and went in to find there was no heartbeat. There is no known cause for the stillbirth.
I am not sure whether or not the crohn's played a part with the baby's death. Neither do the doctors. I saw my GI a few weeks ago and she ran some tests. In the barrium test it showed that the small intestine was inflammed. She put me on Pentasa 500mg (3 caps 2 times a day). It seems to be working. The pain is better than before. It only occurs occassionally. I try to think positive and look forward to having a heathly child in the near future." Fatima, Michigan.
Hi Fatima, we're sorry for your loss. Thank you for your story.
"I am 46 years old and was diagnosed a little over 12 months ago. However, hindsight being 20/20, I can see that my first symptoms appeared as an 8 year old child. About 8 years ago I was having dierrhea, cramps, along with alternate constipation. I had an EGD, and barium x-rays that showed nothing. My GI that I was seeing at the time believed I had Irritable Bowel Syndrome and gave me a prescription for Prevacid.
Luckily, I got "better" and thought no more about it until last year. Last March I went to the ER of the hospital where I work (I am a hospital chaplain), with abdominal pain, and low-back pain. I thought I was having a kidney stone attack. I had a kidney stone diagnosis the previous October, and assumed that I would be sent home with pain medication, a urine filter, and orders to drink plenty of fluids. Well, as is typical, they took blood work. My amylase and lipase enzymes were elevated. Both signs of inflammation. However, those are pancreatic enzymes, and inflammation of the pancreas is NOT a good thing. I was wisked over to imaging for a C-T scan. Nothing showing regarding the pancreas (CT's really aren't don't sho good pictures of the pancreas)except there was significant "thickening" of my colon. Another sign of inflammation. I was admitted to the hospital...given a liquid diet and pain medication. I had my blood draws dailey.
When I they came down, my new GI doctor said, "I want you to have a colonoscopy in a couple of weeks. Something is going on." The colonoscopy was clear. He said, "lets' do an EGD." It showed stomach inflammation, but not enough to cause the pain and the elevated enzymes. By this time, I was having diarreah and cramping as well as fatigue. His last image tool was for me to swallow the M2A capsule camera. The results showed in the small intestines evidence of Crohn's disease. I was immediately given Pentasa and put on a low-fat diet. Within two weeks of starting the medications, I was significantly improved. I have had two minor flare-ups this year. Was switched to Asacol and doing okay. I have found that simplifying my life has helped.
I am a person who can very easily become overcommitted to multiple organizations and causes. I asked to be excused from two committees I was on for my professional ogranization. I now only work on things outside of my place of employment and church, if it is something I really want to do, or has a definite end time. I also try to maintain a routine to my day. The major disruption usually being that I am on-call four nights a week. But, that being said, I love my job...I love my family...I love my church."
Thank you for your story...stay positive."
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