Comments for Living With Crohns Disease

Comment on Living With Crohns Disease by Sibyl Pinnock

Sibyl Pinnock — Fri, 12 Aug 2011 00:32:11 +0000

I’VE BEEN LIVING WITH CROHNS DISEASE FOR 16 YEARS NOW. FIRST I WAS DIAGNOSED WITH
UC AND GOT MY FIRST SURGERY FOR A TOTAL COLECTOMY PLUS A JPOUCH PLACED,THIS DISEASE IS SUCH A PAIN SOMETIMES I AM SO DEPRESS HARDLY GOES ANYWHERE BUT I’M STAYING STRONG. OVER THE YEARS I’VE GOTTEN OVER 12 SURGERIES RESECTION,ILEOSTOMY BAGS,HERNIA REPAIRS FISTULA REPAIR YOU NAME IT I HAVE GOT IT DONE TO ME. AT THIS MOMENT I THINK I AM IN REMISSION. I PRAY EVERY DAY FOR THE LORD TO GIVE ME HEALTH AND STRENGHT TO GO ON,EVEN WHEN I ATE ANYTHING IT RUNS RIGHT THROUGH MY BODY. RIGHT NOW I AM NOT ON ANY MEDICATION I AM ASKING WHAT IS THE BEST MEDICINE I CAN TAKE AND A GOOD DIET TO GO ON,I AM SO GLAD I SAW THE ADS FOR THIS SITE THANKS AGAIN FOR ANY INFORMATION I CAN GET.

Comment on Crohn’s Disease Prognosis by STEVE

STEVE — Sat, 06 Aug 2011 18:31:08 +0000

I was told in March of 2011, that I have Crohn’s. My life has changed sooo much. I am in the auto business, where you are expected to work all the time. Over the last 15 years I have worked my share of hours. Now, Some days I cant even manage to come. It has started being a embarrassment, almost like I just dont want to work. I thank God that everyone around me has been so supportive. I know I could go through all this with out their help!
I get sick mostly in the mornings, not every morning, but most.
I am so sorry this disease pick me, but I am a fighter!! I want let it win!!

Comment on Using Painkillers by P.J.

P.J. — Wed, 27 Jul 2011 13:22:06 +0000

I have always thought that our Gastro MD’s should be more informed themselves about all the “other stuff” that accompanies our Crohn’s Disease. These do include swelling of the joints, muscle fatigue, and just plain tiredness. The disease hurts. It is hard to get pain meds though. I feel as though I have to beg for it. I run about 30 miles a week, take good care of my body and still have alot of pain and suffering. Its almost like your fighting a battle that no one believes is there. I usually take Norco when needed, and zanex for muscle spasms. I’ve had four re-segments.

Comment on Bowel Obstructions by P.J.

P.J. — Wed, 27 Jul 2011 13:17:06 +0000

I have Crohns, I am 42 and have lived with the crummy disease since i was 14. Yeah, I would often think, am I the only abnormal person out there? After years of fighting, I am convinced that running and physical fitness in general helps alleviate my symptoms, somewhat. I have tried eating all the right things, to no avail. I do take Imuron, which helps immensly. Keep up the fight, its a hard go, but know that your not alone in your struggle.

Comment on My Crohn’s Story by Dusty

Dusty — Tue, 12 Jul 2011 01:08:36 +0000

i was diagnosised after i had my first son at age 26. i had been struggling for about 4 years with diahrea and discomfort but ignored it. i was working in the hospital and had rebound pain that sent me to the floor. i was put on asacol but took myself off after about 6 months bc well i hate pills. i had no serious symptoms for about 3 1/2 yrs. almost a yr after my second son was born i landed in the hospital with a flare i was in so much pain i couldnt see straight. after a moltatuid of tests steriods were ordered and a low residue deit. a month later the pain was no better and i had been to the er atleast once a week in tears. i was rushed in to a emergency bowel resection they took 18inches of my small intestion and reconnected but i also had a fistula tunneling into my colon. so they gave me a colostomy to allow the fistula to heal. 7 weeks later i landed back on the surgery table for yet another resection. Where the first connection was another 18inches was taken. this time they didnt reconnect instead they gave me a ilieostomy ( they didnt at that time reconnect the colostomy) so i lived for 6 months with two ostomies. the pain in those six months was horrible the flare never calmmed down i was in and out of the er atleast twice a month. i ended up on so many pain medications i had to have someone else watch me and my kids ( they were 4 and 18months). finally in june they reconnected the two ostmies and gave me a loop ilieostomy( pulled a part of my small intestine out put a slit in it and they stiched it to the outter abdomen) they lasared a few nerves as well bc the first ostomies tramatized a few nerves and caused alot of pain. i had the loop for 3 months and was still in and out of the er with pain and serious weight loss ( 158 to 107 in 3 months) i ended up haveing dump syndrome and malubsorbtion which in turn caused me to go into acute kidney failure. i was put on iv fluids around the clock and sent home for 2 weeks( on the iv fluids) ( had to go home to be there for mfy youngest sons birthday) had the last surgery in september. since then i have been fighting to calm my flare. i have been on every pill out there for this diesease and nothing has worked humaria shots are not effective and finally i was put on remicaide that worked for 4 months now i’m fighting again bc the flares are back. they are increaseing the dose and frequency of the remicaide. ive been told by my all my gi doctors i am a very severe case of chrones. i go to a teaching hospital and the interns fight to be on my case. i have two small childeren and a wonderfully amazing husband. if i cant get the flares under control i wont be able to have anymore children ( the hormone shift can cause a flare) i live with pain daily i work when i can but i cant keep a consistant schedule. im scared of being a burden on my husband and afraid my children will not remember me if ( godd forebid) something happens to me. if anyone out there has any suggestions or advice please feel free to shot me an email nurse_dusty@verizon.net

Comment on Using Painkillers by Angela tolentino

Angela tolentino — Mon, 11 Jul 2011 05:44:56 +0000

I have been living with crohns for 8years found out I had it after getting deathly sick .I’m scared when I get really sick cause I don’t think I’ll make it.some of the medicine the companies will help you pay for them.I have gone from never taking mess to pain med.all the time the doctors think your faking to get pain medicine believe me as much as I can’t stand hospitals and doctors,I’m not faking I stay I’n pain.Thanks for the website .Not many people know anything about this disease .

Comment on Living With Crohns Disease by Felicity

Felicity — Tue, 28 Jun 2011 04:29:42 +0000

I’ve been diagnosed with Chron’s when I was 14 years old accidentally when I was rushed for an appendix surgery. I was briefly on Asacol, but chose not to take it as I felt like it worsened my symptoms. My infection is from the start of the small intestine, I’m 29 years old now, have 2 lovely children and have lived a close to normal life (maybe I just got used to the pain) However, I haven’t been looking after my disease as properly as I should, I basically ignored it for 10 years. Now after the push of my over concerned parents I made the step to see a doctor for a check up. I went for the usual, Stool testing (yes blood was found), Colonscopy – which by the way was one of the most terrible experiences of my life, they took around 10 biopsies which i could feel, my insides are pretty sensitive to “stretching”. I will be going for a MRI to see the extent of my chron’s, as the valve that seperates my small from my large intestine has almost grown shut, only 1.4mm wide! I’m due for an operation to remove/replace that area, fingers crossed that my once “normal” live won’t turned upside down. Well, just thought I’ll enter my bit… I’ll see what happens after my surgery, I hope however that it doesn’t go from ok to absolute worst like for some ppl I’ve read in this blog… :S

Comment on Flares And Remission by antoinette

antoinette — Fri, 17 Jun 2011 21:27:39 +0000

“Since I’ve had Crohn’s, I can never truly say I have been in total remission. If experiencing the bowel habits of a normal person and having no symptoms of disease whatsoever is true remission, then I believe there’s no such thing.”

This is what is so interesting about this disease. Each person who has it, yes, has the symptoms and signs of it, yet we are all different and unique in our illness. I have to say that for seven months, I was in complete remission with normal bowel movements. Shocking, I know. But, in order to get to that place, I was on 40mg, 3x a day, for six weeks of Prednisone. It actually bought me seven months of my “normal” life back. Yet, I paid the price for it. (And I would do it again if given the chance) Although I didn’t get the moon face, I did gain 35lbs. And when you reach the age of 50, it isn’t as easy as one thinks to take it off. I will never forget that time. And I lived life to the fullest and extremely thankful for it.

Comment on Crohns Disease And Hospitalization by antoinette

antoinette — Fri, 17 Jun 2011 21:17:20 +0000

I hadn’t had a bowel movement in 7 days. Actually, the only way I do have one is from a Crohn’s flare up. I know about the pain you are describing. Being female and never giving birth, I can only think that the pain I went through was something beyond child birth. More like an alien inside of you. It hurt so bad. And I was on the verge of the vomiting scene that I told my husband I needed to go to the ER. I despise them, when first diagnosed, I would go because I could hardly walk due to the pain in my legs and the doc would look at me and each time I heard “go see your primary doctor.” I swore I would have to be on death’s bed to go back to an ER again. Boy was this one close to that. Do not hesitate going to the ER if you are in alot of pain. I almost lost my colon because of it and because I chose to go and play it safe, I’m still intact.

Comment on Crohn’s Disease Prognosis by antoinette

antoinette — Fri, 17 Jun 2011 21:07:17 +0000

I was diagnosed with Crohn’s over five years ago. The first three years were very difficult, physically. Trying to get through each day at work was a challenge. I was on Entocort for a year and a half and then decided to change doctor’s. I was lucky to find one of the top 10 GI doctors in the country. We did colonoscopies, endoscopies, capsule endoscopies, everything under the sun and each time, it showed mild to moderate Crohn’s. The problem was, my body was rejecting all the medication I would go on. When on one drug, I developed pancreatitis and my liver enzymes went up to 1700. I was very sick. Since that time, we tried many more drugs and kept discovering my body rejecting them. I was referred to a new GI in the town I moved to (70 miles away) and he tried one other drug and again, I was extremely ill. I will say that back in December 2009 when I first heard “there’s nothing more I can do for you”, after a month’s time, I chose to go into therapy to help deal with the emotional aspect this disease had on me. I’m still in therapy today and still working on the acceptance of it. I am officially classified as a “non-treatable” Crohn’s patient. I now learn to live in pain for the rest of my life. I had my first hospitalization a few weeks ago, I was constipated for 7 days and my colon was completely inflammed. It’s a good thing the 3 stool softners and the one suppository worked, or they were going to do another colonoscopy and possible removal of the colon. It’s not easy being a Crohn’s patient, we do lead an interesting life and I truly hope that one day I will come to an understanding why I am the only one in the family to have this disease and why it chose me.