Surgery Central

Have you had surgery? An ostomy? Any other Crohn's-related surgical procedure? There are many Crohn's patients out there who have, and many who have not. Those of you who have been through such a procedure can provide valuable support and advice to those who are about to undergo similar treatments. Send your experiences and/or advice to share with others on this page.

Stephanie: In February of 1998 I had a bowel resection removing a half of foot of my intestines.  I was lucky that it was all refined to one spot, but I had a lot going on inside that surgery could not be avoided.  First I had a few fistulas that had perforated my intestine, I had a blockage from years of scars tissue building up from being untreated, my appendix had abscesses, and my body produced fat to help heal itself but it wrapped around all the loops of my intestines and was squeezing them together.  You could only imagine all the pain that I was having.  I went into surgery at night it took around two hours, I honestly don't remember a thing about afterwards and the next few days after that.  I know that I had a self medicating machine which injected me with a dose of morphine when I needed it (that is if I was allowed to have it).  Honestly, the worst part for me was the tube down my nose. I hated that, plus I had a central line ( IV) in my neck, but that was not that bad.  I was in the hospital for two weeks and did well when I got home.  It felt so cool to eat after that!  It took we a long time to recover, but by summer I was set and back to my normal self again!  I am currently on Pentasa and am in a flare up but no where near as bad.  Basically SURGERY IS NOT THAT BAD! =)

Jennifer: I have had Crohn's since I was at least 7 years old. That is 15 years! I NEVER needed to take any medications for my Crohn's until last year. I was on Demerol for pain everyday for that year, plus Prednisone. I finally had my first surgery a month and a half ago. They removed 14 inches of my terminal ileum and ileum threw a 3 inch vertical peri-umbilical incision. Very small. I'm told by my surgeon and doc that the scar will go away in about a year or so. that makes me happy. I'm no longer on any medications. I feel NO MORE PAIN! I forgot what it felt like to be normal and pain free. I have had this disease since I was a YOUNG CHILD (7 yrs old) And I cant believe that I feel this good now, I just hope it last a long time. I was eating solid food the second day after my resection, to me that is amazing! 

Ivy Rose: On August 25th of 1998, I had surgery for Crohn's. At first, it was my own decision; the medication I was on was not working, I was in a lot of pain and I couldn't gain any weight. I also was planning on moving across the country for school, and could not afford meds on my own. I also just wanted to be better. My doctor did a bunch of tests just before surgery, and he discovered a ileo-sigmoid fistula (a hole connecting my lower small intestine to my lower large intestine) and a sigmoid stricture (a narrowing in my lower large intestine). This meant that surgery was now necessary, or my condition would just get worse. I had about 2 ft. of small intestine and 3 in. of large intestine removed. I stayed on a low residue diet for 6 weeks after, and now I can eat anything and everything! I am on no meds, and other than getting tired really easily, I have no remaining symptoms of the Crohn's. I consider the scar down my middle a reminder of my ordeal, and the fact that I am not cured. But for the moment, I'm just happy being healthy (and finally getting fat!).

Slim: I recently found out that I had to have surgery to remove part of my ascending colon and part of my terminal illeum...then reconnect the pieces..... due to the severity of the Crohn's and the forming of some unpleasant lesions ..... I was at this website reading about everyone else's surgery to learn more for myself...thats why I'm back writing this.....I had the surgery and I'm currently recovering now at home....The surgery went well....They knock you out so you don't remember anything or feel anything...the next couple days in the hospital are rough ( I won't kid you)...you have tubes in you and an IV machine next to you...lots of shots for antibiotics, anti-inflammatory, and anticollants.....But this is for the best.....My advice is to ask questions on what is going.....stay strong... and remember this is all to get better. I don't want to get into grand detail about my whole hospital stay....but will if anyone asks...I'm still recovering now... feel better and life is better in general....and I can eat anything I want...what a change....that's a quick version of it...hope it helps...reading about other people helped...if anyone wants to talk....I'm usually around. I'm still in the early stages of recovering....

Emily: I am 19 years old and was diagnosed with Crohn's when I was 12 years old. I had been sick for many months and was afraid to tell anyone because I didn't want anything to be wrong with me, and I figured if I just didn't tell anyone that it would disappear. (I know, it's crazy, but you all know what kind of thoughts go through your head when that first pain makes you double over!) Finally, my mom noticed that I had lost a whole lot of weight in a very short amount of time. I had lost over 40 pounds in 2 months, I looked anorexic, so she took me to the doctor. I was diagnosed with Crohn's the next day and I was very scared. I have had a really rough road since then, including having my colon removed and getting a permanent ileostomy. I was so sick when I had the surgery that I didn't have time to be afraid of what life would be like with an ileostomy. And by the time I was better, I was so happy to feel better that I loved having it. My life is still (maybe even more) exciting and fulfilled, and I have no problem having the ileostomy. I have only had a few flare ups since I had the surgery, and I can eat a lot more now than I could before! I am only taking about 10 pills a day, which is a far cry from the 29 I used to take! But, I have been through a whole lot and have managed to keep my spirits high! If anyone wants to talk to me about my surgery or anything else I would love it!

Keri: I was diagnosed with surgery August 30th 1999, and because the meds I was on  (Prednisone, Asacol, compazine, Flagyl... not all at once of course) weren't working as well as they should have I was getting flare ups about every two weeks. December 15th I had surgery, the prep for it wasn't all that fun, clear liquid diet, 'sparkling' laxative, laxative pills, and when i got to the hospital 2 warm water enemas (they aren't TERRIBLE, but they aren't fun, and they don't really hurt or anything). I was kinda nervous, but once they wheeled me into the operating room I didn't remember a thing. The next thing I knew I was in my hospital room, a little nauseated and in some pain, but with no tubes in me except an IV. I got home yesterday (Dec. 20th). I'm not in a lot of pain, just a little stiff from the steroids and surgery you get kinda bloated/retain water, but that will go away. My dr. said that the Crohn's was all refined to one spot and he could see how I'd been struggling with it, but he got it all out and he said it wasn't starting anywhere else either. He's super optimistic that it won't come back, (lets hope!) and I'll be put on Asacol in about 2 weeks to help 'prevent' it delay it from coming back. From what I've heard it can actually NOT ever come back.. which would be great, but anyways. Surgery isn't that bad.. my cut is from my belly button about 6 inches straight down, and it doesn't hurt hardly at all. Now all I have to do is recover! Surgery isn't that bad, and I'm looking forward to actually being healthy again! If anyone has any questions email me!

Jessica: In August of 98 I was told a had a tumor in the sigmoid colon and had emergency surgery, removed the tumor and found that it was malignant, the lymphs were not metastasis! I went home and the incision kept draining all the while it was healing kept regular visits to the doc and kept asking him why I'm not on antibiotics; his answer was that it was draining well so it would be O.K. I kept telling him I had pain in my arms the a few weeks go by and I'm having pain in my legs and I starting to lose my appetite, which I was just getting back. I never had surgery before, so I  it took me a while to know that this was not right. Two months later I admitted myself to the E.R. They called the doc and he did emergency surgery again because of abscesses in my abdomen and infection. So they cut me open flushed me with antibiotics and also had to take a piece of my small intestines because of adhesions he cut some of it and had to resection it, but could not at that time resection my colon because I was so sick.  They call it "sepsis", or blood poisoning. I read about it later and learned that only 4% of the ones that get it survive. I sure know I'm lucky! All my tests since then have been good! CEA, is 1.3 now but even when I had the tumor it was within range at 3.8. I now stand fattened up and ready to survive another operation on Feb.8 for the resection and also a total hysterectomy and repair a lateral hernia I really hope they can put my colon back together as I'm still young. Well that's my story thanks for letting me tell it, feel free to contact me if anyone would like to.  

Jenna: In June I was told that I have Crohn's. My most recent doctors app. he told me that they need to take a closer look at my intestines, and then we should discuss surgery. I'm really worried about this, I've tried the new treatments and they seemed to be doing the trick. but I always feel ill and tired. my cramps at times make me double over. Surgery looks like the last resort for me. If I have this surgery does this mean that I will have to have one of those bags? How will it affect my weight. My weight seems to go up and then down it never stays constant. Will my tiredness go away? I have so many questions about this disease It's nice to be able to get someone else's input, someone who suffers from the same thing. My friends and  family are very supportive but they just don't fully understand. I think it's great that there is a way I can communicate with others with the same problems!

Addam: I have had Crohn's since I was 13, but wasn't diagnosed with it until August of '99. They had put me on Prednisone and Pentasa to control the inflammation, but they failed to work. Finally the pain became so bad that I took myself to the hospital. they decided I needed surgery the next day. I had a tube in my nose ( very uncomfortable ) for 11 days, a catheter ( one of the worst pains in my life ) for 3 days, and then all the IV that they give you. after about 3 days they decided that I needed nutrients or I would become to weak for the surgery. So they gave me a central IV. that was not so bad. Finally the day came to have surgery, man was I scared. I had never been in the hospital before like this and just the thought of what was going to happen just freaked me out. Then they gave me a shot that would calm me, and we headed to the operating room. The surgery went well. They removed 6" of my small intestine, my appendix, and 4" or my large intestine. They also opened a couple other spots in my small intestine that was starting to close up. I was in there for 4 days after the surgery, and now I only have minor flare ups. I think that the worst think about the whole ordeal is the time that you have to spend in the hospital, and the pain you feel when the move you from the O.R bed back to your own bed. That hurt the worst. My advice to anybody having surgery is that you should stay calm, if you have any ?'s, don't be afraid to ask, and keep a positive attitude..........it will get better!!

Terry:  On New Year's Eve, 1998, I started to develop severe stomach pains which gradually worsened during the evening.  Just after midnight on New Year's
Day, my pain was so bad that my wife had to dial 999 for an ambulance.  As the ambulance service was dealing with the usual drunks and their falls, the ambulance took an hour and three quarters to get to me!  On arrival at hospital, there were so many casualties that I ended up away from A&E on a trolley in a corridor.  The triage nurse completely misunderstood the seriousness and had me way down the list.  Fortunately, one of the A&E consultants saw me in the corridor and pulled me in to a cubicle to examine me.  My abdomen was rigid by this time with no bowel sounds.  He sent me for X-rays which showed a large bubble of gas beneath my diaphragm (accounting for my shortness of breath and chest pains).  He got the surgeons to me and they arranged for me to go to theatre for a laparotomy, but I was warned that a colostomy was a distinct possibility.  I awoke with a colostomy and a large incision in my abdomen.  I was on pca (patient controlled analgesia) with antibiotics and fluids i.v.  I was told that I'd had peritonitis due to a sterocoral ulcer - a diverticular pouch which had burst.  I'd had Hartmann's Procedure which left a rectal stump with the intention to join me back together in a few months.

I developed MRSA infection, so was in hospital for about four weeks, with returns later for adhesions caused by the surgery.  In June, I returned for the reversal of Hartmann's Procedure - to remove the colostomy and to join the colon back to the rectum.  I was prepped with Fleet laxatives (three bottles) which was difficult needing to empty the stoma bag frequently.  I'd switched to a drainable bag for this.  I was given an epidural before the general anaesthetic and awoke in ITU.  Unfortunately the epidural cannula slipped and it stopped working, so I was switched to pethidine pca the more usual morphine makes me very sick).  After 24 hrs in ITU I was returned to the ward side room because of the MRSA risk.  On the day that the MRSA swabs showed clear, my wound burst open and started leaking MRSA contaminated fluid.  That took eleven weeks to heal.

I continued to suffer abdominal pain which my consultant investigated.  I had two hospitalizations due to obstruction which both times cleared itself, although with the help of laxatives and Fleet enemas.  In March 2000, I was again admitted with obstruction, vomiting and much pain.  I was getting regular i.m. pethidine injections in my legs for the pain.  I had several X-rays and an unprepared barium enema to try to find what was causing the blockage.  Two Fleet enemas were administered to try to 'get things going', but without success.  By the evening of the next day, my caecum was so dilated that it looked like a balloon under the surface of my abdomen.  I was warned that, if my bowel perforated, I'd have a 50-50 chance of survival.  An emergency operation was performed where all of my colon, bar the rectal stump (to avoid healing problems and phantom pain later) was removed and a permanent ileostomy formed.  Sections of my colon were necrosed - dead and rotting!

I am now home learning to live with my ileostomy and slowly overcoming post-operative soreness.  The surgeon didn't believe in key-hole surgery - he slit me from diaphragm to groin.  However, I feel much better than before the operation.  Sympathetic nursing and a stoma care nurse are great aids to recovery.

"BlanChai36":  I'm not very good at telling stories that happened to me but I am going to try at this because it's a story that I haven't really told many people partially because it used to be embarrassing to tell the people why I was under going the surgery. During my sixth grade year (1997) I was diagnosed with Crohn's disease I had been through 3 surgeries when they finally diagnosed it. The first surgery was horrible it wasn't only traumatizing for me but for the doctor doing it as well. I had gone to a military hospital that didn't have a Pediatric Gastrointerologist so I had to use the adult one. During this surgery I went into cardiac arrest and almost died. I came totally out of the sleep that they normally put you in and totally went flat line. During this surgery they were only able to find out that my stomach wasn't digesting properly. The doctors still thought it was in my head. None of my symptoms were fitting together the kidney stones at ten, the mass lump in my smaller intestines just a year before none of it. So the doctors recommend me to a psychologist because they thought it was all in my head. The shrink recommend me to a close personal friend who was a pediatric gastrointerologist he decided to go in again. This time the doctor refused to
pull the endoscopy thing out ( sorry I don't know the technical name) when I tried to pull it out I then went flat line but he still didn't pull it out. He was able to find 3 ulcers, one in the duodenum, one in the esophagus, and one where the stomach and intestine meets. He then decided to go in through the rectum, but this time the doctors finally got some since and put me to sleep they found that I had acute Crohn's disease. This time absolutely nothing happened during the surgery no flat line no cardiac arrest - nothing. Now when the doctor tells me that I need another surgery the first thing I ask for is anesthesia.

Hovanes: Well I had stomach pains since 5th grade.  I was small since then.  All my doctor wanted to do was test me for Diabetes and other stuff.  Then about last year June 25 I was determined to have Crohn's Disease after having an emergency surgery.  I will never forget that night.  And I hate my doctor because of putting me behind.  But I have had good times since then.  I just pray to god saying 'thank you' for it not being cancer.

Roseanna:  To all those who are expecting surgery, it isn't normally as bad as it sounds. It only gets really bad if it's allowed to progress to a stage where they have to remove a lot. This happened in my case, because my GP claimed the diarrhea was normal for three months. By the time I got to hospital and the consultant saw me, my whole body had shut down. Because of this, they had to wait till they flushed the toxins out of my body to operate. They removed all but a foot of my large bowel, so I was lucky not to have an illeostemy. After I had recovered I felt much better than before the whole thing started. Even if the treatment goes on for a long time you just have to remind yourself that it will end.

Emily K:  On October 12th, 2000 my mom brought me to the hospital after a week of pain which I thought I was just run down with the cold I had and also just thought that the cramps I was having were "just gas".  That night in the ER, I saw numerous Doctors, had the usual x-rays, shots of morphine and waited.  They admitted me to the hospital where I spent the night on Pediatrics (the best floor in the world... they have the sweetest nurses - and Popsicles!!) The next day - Friday the 13th - I was told that I had a huge abscess and that part of my intestine was perforated and they were going to operate at 5:45 p.m. that evening... So that night I went up to the OR and awaited my operation... they removed an abscess the size of a fist, about 12 inches of my large intestine and 6 of my small and my appendix.  Then my surgeon stood over me for 20 minutes debating whether or not to give me a colostomy bag or not.  But because of my age and my overall health, he decided to reconnect me and hope and pray for the best.  The next morning when I woke up, I awoke to a catheter, a drain coming from my abdomen, TPN in my neck (yuck & OW), a 10" cut on my tummy and thrush in my mouth from the breathing tube.  I spent the next two weeks in the hospital, including
Oct. 18th - my 18th birthday.  I was released 3 weeks ago yesterday, and am on only 15mg of Prednisone, but am now on an anti-depressant.  My surgeon
didn't stitch me or anything - I'm "healing from the inside out"... I'll be left with a huge scar to remind me of this awful disease... but I hope that this surgery will stop the pain for a while!  Thanks SOOOO much for this site... and remember that what doesn't kill us, just makes stronger!

Adam: I was diagnosed with Crohn's disease in December of 1999. My doctors put me on Prednisone, Flagyl, and Cipro. I was on that for months and got a little bit better, so I was gradually taken off Prednisone and put on Selasoparine. I had another flare-up and was put back on Prednisone. I was doing very well until the beginning of August. On August 4, 2000 I was admitted into the hospital because of severe bleeding. I was put on N.P.O. (which means nothing taken by mouth) I bled again and the did an endoscopy and colonoscopy a coulpe of days later and found my whole colon to be ulcerated. The bleeding was caused by an ulcer pushing up against a blood vessel. They kept me on N.P.O. for a couple more weeks but I bled again. They decided to do surgery. On September 6, 2000 I had a subtotal colectomy and ileostomy. They removed my entire colon and I now have a stoma and bag. The surgeons did it lapriscopically, so instead of just cutting me open, they make 4 little incisions. It takes less time to heal. I was in the hospital for 10 more days after the surgery and then discharged. Having the surgery is great! I'm off Prednisone and only on 250 mg. of Flagyl. I have gained most of my weight back, and I don't worry about cramps or flare-ups, or having to go to the bathroom so many times a day. I am feeling great! It is the best thing that can happen to a Crohn's or Colitis sufferer. I'd like to talk to anyone else that has had the surgery!

LynnAnne: I was diagnosed with Ulcerative Colitis in Jan of 1996. It got under control quick. I didn't have any problems for a few years but now for the past 2 years I have been super sick. I think I took every kind of treatment for UC except Cyclosporine. I had a blood transfusion because I was loosing blood faster than my body could reproduce it. The Prednisone. gave me diabetes and that was a mess in itself. I spent my 18 th b-day   learning how to give myself insulin injections. There are not many of us on here with uc but mine got bad. I had a complete colectomy, ileostomy, and a j-pouch created on July 11 2000.That was the worst experience of my life! I am not trying to scare anyone but I was totally unprepared for the pain and struggle that this surgery creates. I had a very hard recovery from the first surgery including toxic reactions,  infections, withdrawals,  post Op depression and anxiety got out of control and I am still trying to get that under control. I had my ileostomy reversed Sept.28 I am doing sooo much better and am soooo glad I did it. I am still dealing with side effects but in the end I know I made the right choice to be able put my life back on track. I will hopefully be able to start college next semester and get on with my life.

Melissa: Even though I am not a teen anymore (I'm 22), I would like to share my experience.  I was diagnosed with Crohn's when I was 10 years old.  I've had it for 12 years and I underwent surgery about a month ago.  It was one of the worst experiences I've ever had.  I was relatively healthy up until a year ago.  My small intestine just slowly closed up.  I had to get 18 inches of my small intestine removed and they had to widen a narrowing part.  I was in the hospital for a week and honestly the worst part was the tube in my nose going into my stomach.  The day I was to go home, they found an infection in my 8 inch long incision and they had to reopen it.  Ouch.  So right now I'm sitting here with an inch wide open gash on my abdomen.  I'm expected to be healed within a month (hopefully before Christmas).  I can't even take my new medication because it suppresses your immune system and then I won't heal.  I'm very anxious to get better and I hope that I'll never have to go through this again.  Sorry to sound so negative about the surgery, but I just want everyone to know what people with Crohn's have to go through.  Thank you.

Angie: I have been dealing with my Crohn's since the summer of 96.  I had my surgery this last march.  I now have an unsuspected colostomy.  Which most people call '' the bag'' If anyone has questions about surgery or going to have an ostomy please feel free to e-mail me I am a very open person to discuss these issues with.  The reason why I say I have an unsuspected colostomy is because I was actually diagnosed with Ulcerative colitis.  It was a few days after my 4th grade year had ended and it was now summer.  For about 2 weeks I thought I had the flew.  I was vomiting and had serious diarrhea.  So my parents took me to a specialist.  "We did not have a child specialist here in town.  For a while I was going to him and was on Sulfazalizine, Asacol and Prednisone.  They kinda worked because I would go to school for 1 day then miss 3 then go 2 days then miss one and so on like that. But sometimes I could miss 3 whole weeks in a row. Finally a child specialist came to town.  But still since 5th grade to 8th grade i was missing school like that.  They all thought I had UC, but when we decided on surgery my surgeon found out I had Crohn's so I woke up with a surprise.  I was going to have the J-pouch done but now I just have a colostomy, because they took out 8 inches of my colon.  I missed so much of the 8th grade that I am getting held back this year but it feels so great to feel so great again!

Erika: When I was first diagnosed with Crohn's when I was 9.  The doctors new right away that I had Crohn's.  At first they put me on medications, they would help me for a while then I  would get another flair up. Then the doctors put me on an tube that went up my nose and into my stomach for months at a time but as soon as they started giving me more food I would get a flair again. Me and my mom tried other things such as alternative medicine witch helped for like a year but after that I got another flair and I had to go back on regular medication. So now I am 16.After being in the hospital for 3 weeks me, my family, and my doctors decided I should have surgery. So I went for surgery October 00.  The morning of the surgery I was so scared. I had no clue what surgery was like because I never have had a surgery before. Well then the doctors came to my room and rolled me down to the waiting room. I think that was the scarcest part but my parents were their talking to me before I went into the operating room. In the waiting room the doctors gave me this medication that calmed me down. It was good that they gave it to me because I was so scared and nervous. Then soon they rolled me into the operating room. Their were a lot of nurses and doctors in their but I could not really tell because they gave me medicine to make me kinda sleepy and that's all I remember. I woke up to chocking because they were taking out my breathing tube but I was too sleepy for it to really hurt.  Then the doctors rolled me in to the ICU and I stayed their for 2 days.  The surgery took 5 hours because my intestines were so inflamed.  They got out all the disease in part of my colon and small intestines.  Now I feel great.  It was probably the best choice I could of made.  I can almost eat everything and with out stomachs. Well I hope my experience with surgery will help others to see that it is not that bad and actually it is really worth it.

Kat: I have been diagnosed with Crohn's since I was 8.  I am now 18.  I remember going to the doctor and he would ask me if I was ready to feel normal again and I would say "I don't know what normal feels like"  I believe that is true for most of you.  I was diagnosed so young that I forgot what it felt like to have a normal stomach.  to be able to eat and not be screaming in pain.  Not to mention the total embarrassment of having the big "D"  in school.  and having to go every hour. Anyway- my doctors in Ga. all had the same philosophy: Prednisone and more Prednisone.  I swear, that drug does more damage than good.  So, for many reasons I decided to move to Fl to live with my Mom.  Here we found a wonderful doctor.  He is very aggressive with my disease and any other side-affects that I may have.  he suggested that we go ahead and do a consult with a surgeon.  So, we did.  He was great.   To take you back a little bit since I have lived here in Fl I have been hospitalized 3 times and I moved here in July of 2000.  The last time that I was hospitalized the surgeon came to see me and asked what I wanted to do.   Needless to say I was sick of all the crap so I was all for it.  I was transferred to another hospital and 2 days later was in surgery.  all that I remember is the waiting room right before the o.r.  I have to be honest, I was so scared.  I took a trip down to the chapel the day before and made my peace with God.  I thought that maybe I wouldn't wake up or maybe I would feel it.  But it was smooth sailing.  I recovered very quickly and was put of the hospital in less that a week after surgery.  Oh, in surgery the removed my colon and a part of my ileum  I also had a fistula but that was gone due to a treatment called Remicade.  It is great, but risky.  I advise you to research this and talk to you gastro. about it. Anyway, I also was scared that I would wake up with tubes in me and all that stuff.  But the only tubes were a catheter and an oxygen tube in my nose.  I got in trouble so many times about that tube.  I kept putting it on my head (that stuff burns).  I also had a central line in my neck which was a gift from God.  It kept me from getting woke up every morning at 4 to get poked.  For all of you who are new to the whole Crohn's thing, its hard but you will survive.  Faith in God gets you through the really hard times.

Tony:  This February I finally said enough was enough and was carted off to the hospital.  When I got there, they literally threw me into a room.  The very next day I had a colonoscopy.  The docs really thought I had lymphoma.  I was very atypical.  I had no diarrhea at all.  The exact opposite happened to me; severe constipation.  So my new GI doc did the colonoscopy and took some biopsies.  It figures that the biopsies didn't match lymphoma, but they also did not perfectly match Crohn's either.  It wasn't until 10 days later when the Prometheus test came back in that showed I tested positive for an extremely acute case of good ol' Crohn's.  The immediately put me on A LOT of Prednisone (when they did the colonoscopy, they couldn't get past the terminal ileum [due to polyps and severe bowel wall thickening]).  Then I went of Flagyl and Cipro.  Of course the Prednisone gave me terrible heart burn so they threw in some ranitidine too.  I was in for 9 days.  I had lost 15 lbs and was down from 165 to 150 (and I'm 6"1' . . . previously my pediatrician tried to tell me I was anorexic.  Apparently he didn't seem to absorb the fact that it really HURT when I ate . . . grrr).  The sharp pains had gone away and I was on the "IBD Diet- stage 3".  In other words, Jell-O and plain pasta.  Well, the day I got home I got worse.  Constipation returned even though I was drinking Peptamen and all my meds.  I went through more fleet enemas that a 17 year old should have to.  Then I had this mystery pain in my lower right hip (later turned out to be an abscess that held a liter of puss [picture a coke bottle then fill it with ugly yellow gunk]).  Well, obviously I ended up back at the hospital.  To make a long story short (LOL), I didn't respond to any of the medications.  I had fistulas galore, including one to the abscess that happened to also rupture my appendix.  The docs removed my entire ileum, the ruptured appendix, and drained the largest abscess that my surgeon had ever seen in his 60 years of practice.  I got the honor of being the worst case of Crohn's disease duPont has ever seen.  I feel soooo lucky (that's sarcasm!).  On top of Crohn's I also have severe arthritis (thanks to the Crohn's) and epilepsy (go figure . . .) and asthma, and lyme disease . . . the list goes on.  So it sounds like I should be dead, right.  Well, as bad as I have it, something finally has worked.  REMICADE!!!!!  Inflimixab, to be technical.  It is a miracle worker.  I've gained 25 pounds back (my lowest was 137) and I can eat a NORMAL DIET!!!  Not only that, since my surgery last month, I haven't had any problems.  I just revisited the hospital and floored everyone.  So, we'll be honest.  Crohn's Disease sucks and there's no two ways about it.  However, don't ever loose hope.  A positive outlook is the only thing that kept me alive, and now I feel better than ever (literally)!  It definitely helps to talk to people with this disease (because how many of your friends want to discuss bowel movements?).  I'm always willing to chat!

"ZakatSpurs": 3 weeks ago I had all of my large bowel removed except 20 cms at the bottom (excuse the pun!) I now have to wear a illeostomy pouch. I was so scared but never fear anyone that's heading for surgery is not as bad as it seems! In the hospital i was at they got you up and out of bed on the 3rd day! I was most scared bout the neck line but i promise you you cant feel a thing the only bad thing about it is when they take it out and have to rip the sticky off and that is it!!!!! All the docs and surgeons were so surprised with my recovery they thought I would take at least a month to recover, by the 5th day I was up and walking round the ward. Two weeks after surgery i went home. Having a bag is not so bad either....... at first I didn't wanna look at my stoma but now I change the bag myself clean the stoma and all that. So my final message is if you are having surgery DON'T WORRY ITS NOT THAT BAD !!!!!! And that's coming from someone who hates blood tests!!!!! You just remember that.

Stuart:  After the standard problems of getting diagnosed (No, I'm really not an anorexic), And the tests involving tubes and the most private of orifices I was finally diagnosed as having Crohn's disease. My first reaction was what's that? A handy video starring John Cleese and some doctor soon put me right, they just left out the bit about arguing with your housemate who was using all the toilet rolls.

The drugs didn't work, lots and lots of steroids, Pentasa and an antibiotic I can't remember the name of had the limited effect of making me put two stones on (upgrading me from skeletal to skinny) and giving me spots for the first time in my life at the age of 23. Most distressing.

It was decided there was no real choice but to go ahead with surgery. I was advised that there was a fair chance that I would have to have a temporary stoma but it would be impossible to tell until they opened me up, to avoid this I had a TPN line to feed me up before the operation thus reducing the chances of having the stoma. The operation went ahead and I had a rather uncomfortable night due to the epidural falling out immediately after the operation, this meant that I effectively had no pain relief! Ouch! A hook up to a morphine machine and a dopey smile later and the world was looking a better place..... plus no stoma, excellent!

Things went swimmingly after that, I was told that I'd had three foot of my small bowel removed plus part of my stomach, the area they joined was holding up nicely and I should be out of hospital soon. However just as I was starting to feel human again something awful happened, from the TPN line that was soon to be removed I picked up a massive infection. It nearly wiped me out completely, fortunately I don't remember to much about it. Of course it had several immediate effects one of which was oedema (water retention) which sent me from 10 stones to 16 stones in a couple of days, this died down after a few weeks though.

The long term effect was more serious though, the doctors thought the infection had been cleared however it settled in my hip and after going into town for the first time after the operation a pain started in what felt like my whole leg. After much agony, misdiagnosis and inappropriate treatment they found that the infection had fractured my hip and destroyed the lining between femur head (the ball bit) and the socket joint. It's left me in a lot of pain and unable to walk. I'm having a hip replacement in three weeks time. With the Crohn's and the existing infection it's being done in two stages which will mean three months in a hospital miles away from home (groan) and even more time off work (hooray). There's no guarantee It will be a success but you've got to be optimistic.

If there's one thing you can learn from this though is that you should always insist on regular wound dressing and cleaning, nurses are human after all and can forget. On the plus side the stomach's great at the moment and if I hadn't got the infection I couldn't recommend it highly enough. It's just as well it worked though as I can't get to the toilet as quickly as I used to!

Melissa: I am now 17 and I was diagnosed with Crohn's Disease on August 24, 1999.  After having the flu in the 8th grade, I had constant stomach aches until August 23 when the pain was really bad.  I went into the hospital and the doctors thought that I just needed my appendix removed.  When woke up from surgery my parents were crying and I ask them what was wrong and they told that it wasn't my appendix...it was Crohn's.  My entire family knew what this was since my sister, (who is now 20) was diagnose with ulcerative colitis at age 16.  I stayed in the hospital trying to figure out what medicines would work for me.  In early September I started having weird pains, ones that were different than the ones I had had in the previous years.  I had some MRI's done and the doctors determined that I had obsessed and my intestines needed to be drained.  They figured they might as well remove the bad parts of my intestines as well.  On September 9th I went in for surgery.  They prepared me for an ileostomy bag (just in case).  I remember being in so much pain when I woke up.  But the surgery had gone very well, the drained the amount of a 16 oz. bottle of infection out of me.  The also removed 2 feet of my small intestines around my ileum and 6 inches
of my large intestine where an ulcer had formed, and no bag YEA!!!!!  I went home September 18th almost a month of being in the hospital, I was home bound
from school until October 18th.  I have a terrible scar now but it was worth it to be pain free.  I take 30 pills a day including Pentasa, Flagyl, and other multi-vitamins.  And I am also lactose intolerant.  I read about this web site, and I am always looking for people to talk to.  I talk to my sister but it's not the same since she has not yet had surgery and is still suffering.  I hope my story will be read by others, and inform them of my battle with Crohn's Disease. I am always up for talking about it so feel free to e-mail me anytime.

Jesse: I was diagnosed with CD in Jan of 96 (I was 16) and have had terrible problems with it.  In April of 99 though I was admitted into the hospital for hundredth time with pancreatitus from taking 6-mp.  I was there for a week when my CD stared flaring up.  After another week my gastro doc consulted a surgeon.  They decided to do a small bowel resection around the ileum, which is were my disease is the worse.  They took me in for a 2 hour surgery, which they took out foot and half.  The first couple of days were all right because of the Demerol (I am allergic to morphine).  But after the first 2 days I started to have bowel pains and wasn't passing anything.  The next day my stomach started bloating up and then all the sudden I was in the most severe pain I have ever experienced.  After 2 hours of that I don't remember the next 24 hours.  I guess I was rushed into surgery, which is where they found 2 separate perforations in my small bowel.  They cut out the higher one and turned lower one into a ileostomy.  It was quite overwhelming when woke up with my intestine protruding out of my stomach and learned I almost died.  I ended up being in the hospital till July, 3 months to be exact, until I was released.  I came a month later with complications with my ostomy and had it taken down.  I don't want to be negative about surgery but I have been hospitalized three times since then and haven't had good day since.  If anybody wants to talk about surgery or ileostomies or Crohn's please email me.

Hope: I had surgery in January of 2001. I was diagnosed in august 2000 the day before I started high school. I had 2  feet of my intestines removed in a small bowel resection and most of it was my ileum. I have a 4.5 inch scar that I am self conscious and proud of at the same time. I mean how many 16 year old girls can say they go through the kind of pain I have. Now I have the battle wounds to prove that Crohn's is real and bad. the worst part was not being able to move in the hospital for 4 days because I had one of those weird fishline things they use on women in labor. Epidural? I don't know. I was bored. but my friends were cool, they made me laugh which hurt like everything but I was glad they didn't forget me.

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