HealingWell
Search Close Search
☰

Has anyone else had emergency surgery for a perforation?

Support Forums
>
Crohn's Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 3/16/2013 2:53 PM (GMT 0)
I am exactly four weeks out of surgery today. I was sitting on my couch writing a paper when everything went to hell. Abdominal CT in the ER revealed a perforation, abscess, and numerous areas of narrowing of my small intestine (lots of scar tissue - doctors said I've been dealing with this for quite a while).

Had open surgery that night - 45cm of my jejunum removed. I'm still healing from surgery (although I returned to my graduate classes 1.5 weeks after surgery) but I'm wondering if anyone has been there before...? I've read a couple things online that suggest perforations only occur in advanced-stage Crohn's (and only 1-3% of Crohns patients will ever have a perforation). I didn't even know I had Crohn's before the surgery - I just thought I had a sensitive stomach. Needless to say, this has definitely changed my life.

The plan is to do a colonoscopy on 4/4 to check for colon involvement. Once I'm healed enough we will start Remicade and Imuran.

I'm still a bit hunched over, and I have pain that is localized to my left lower quadrant (nurse thought it was nerve pain but it feels like my colon or something). I know recovery is so variable, but it would be nice to talk about this with anyone who's been there. :)

Thank you for reading.
Posted 3/16/2013 5:12 PM (GMT 0)
In 2002 one night I started throwing up non stop, went to ER and they found a bowel obstruction, sent me to our big Hospital and they diagnosed Crohns, Had a NG tube for 4 days and cleared it. Well I never even had time to get on any meds and see a Gastro. about a week later was in so much pain, even worse than childbirth and went back to the Hospital, laid there for 3 days while they did all these tests, finally they said better do surgery and it was a nightmare, I had perforated and laid there for those 3 days, had three abcess's, anyways they had to do two surgeries in two days just to clean me out, they told my husband I might only have 48 hours to live. I was there for a month and came home with my whole abdomen open, they had to have home health come in daily to pack it. I went back to work after 3 months still with an open wound. It took about six months for it to finally heal. I have never been in remission, on Imuran since then, prednisone, done Remicade, Humira and now on Cimzia for the last two years and even while be on all those I had to have another resection last year due to scar tissue. This disease can be a living nightmare but do not let it define you, you need to try and continue life as best as you can. Good Luck to you, it will take some time to heal
Posted 3/16/2013 11:59 PM (GMT 0)
Welcome to Healing Well, tacom! Sorry about the surprise you got that evening. We have several members that were diagnosed because of sudden bowel obstructions requiring surgery. Can't recall if we have anyone other than you to start off with a perforation.

Those abdominal muscles take a long time to heal. Makes it uncomfortable to stand straight but keep working on it. Not sure where your incision is located, but the lower left quadrant pain conserns me a bit. If any bit of bowel contents that spilled during the perforation were not removed, it could turn into an abscess. If you have any fever, the pain increases, or other not normal symptoms - get into see the GI. If the pain is still there when you go for the colonoscopy, make sure to tell the doctor.
Posted 3/17/2013 12:58 AM (GMT 0)
I was diagnosed with Crohn's at 17, when I developed an abcess, but didn't have many other symptoms for 5-6 years. Then I started to have more symptoms and was put on azulfidine (this was 15 years ago before Remicade and other biologics). I was not good about taking my meds and generally ignored the symptoms. I developed what I thought was a flu that seemed to last for weeks. I went to Florida for a vacation, and started to run a high fever with abdominal pain. By the time I got back home from vacation, my fever was sky high and I couldn't stand up straight from the abdominal pain. I went to the ER and they found a perforation and had surgery right away. I spent 18 days in the hospital and took another 6 weeks recovering at home. It changed my life. I was lucky to still be alive. I started to better care of myself and stopped working as much. The hardest part was admitting that I had a serious disease and had limitations. I was 26 and wasn't invincible anymore.
Posted 3/17/2013 12:24 PM (GMT 0)
Porkysgal, I remember the pain of perforation. I honestly am in shock you made it three days without killing someone, ha. In the ER the doctors wouldn't examine me until they ruled out pregnancy first and I remember being so frustrated because I knew they were just wasting time and I needed help/morphine.

I am so glad you made it. I am curious though - are repeat surgeries any easier? I'm so afraid of going back in, but I know I have to prepare myself for that possibility.
Posted 3/17/2013 12:30 PM (GMT 0)

Ides said...
Welcome to Healing Well, tacom! Sorry about the surprise you got that evening. We have several members that were diagnosed because of sudden bowel obstructions requiring surgery. Can't recall if we have anyone other than you to start off with a perforation.

Those abdominal muscles take a long time to heal. Makes it uncomfortable to stand straight but keep working on it. Not sure where your incision is located, but the lower left quadrant pain conserns me a bit. If any bit of bowel contents that spilled during the perforation were not removed, it could turn into an abscess. If you have any fever, the pain increases, or other not normal symptoms - get into see the GI. If the pain is still there when you go for the colonoscopy, make sure to tell the doctor.

Thank you for the warm welcome and advice! Because the surgery was open and exploratory in nature, I have a long vertical cut down my midline from the bottom of my ribs to just above my pelvic area. Bikini days might be over. ;-)

They did not remove all the bowel contents that spilled into my abdominal cavity. I was frustrated by this but they gave me IV antibiotics for a week and told me the fluid would reabsorb. I will definitely make sure to discuss the localized left lower quadrant pain at my colonoscopy, thanks.
Posted 3/17/2013 12:35 PM (GMT 0)

Dave123 said...
I spent 18 days in the hospital and took another 6 weeks recovering at home. It changed my life. I was lucky to still be alive. I started to better care of myself and stopped working as much. The hardest part was admitting that I had a serious disease and had limitations. I was 26 and wasn't invincible anymore.

Man, I hear you here. It's so hard adjusting and realizing I can't do everything anymore - I can't keep pushing myself like I was. I still don't want to believe it.

Would you mind sharing if you've ever gone into remission? Had repeat surgeries? Thanks!

I'm sorry to hear you've both had to suffer through perforations but thank you for sharing. And hey, at least we are the top 1% of something! :-)
Posted 3/17/2013 1:00 PM (GMT 0)
I was in remission following the surgery, but less than a year. Since then, I've had cycles of ups and downs. I'm never symptom free so I don't know if it's remission, but periods of somewhat normal for sometimes years, and then flares especially in times of increased stress like when we had our first child. The sleep deprivation really took a toll so now I know to watch that I get enough rest. I have been on every medication imaginable, including 7 or 8 clinical trials, but no more surgeries. We always find a medication that gets me out of the flare (never symptom free but manageable), but then it eventually wears off and a flare happens. With the clinical trials, you can't keep taking the drug but if it gets the flare under control it's worth it.
Posted 3/17/2013 2:47 PM (GMT 0)
Thank you for sharing, Dave. No repeat surgeries is awesome! I know it's probably a little frustrating to never make it into remission, but it is great to hear you've had luck managing your symptoms and affording yourself some stretches of normalcy. :)
Posted 3/17/2013 11:44 PM (GMT 0)
Tacom: Yes repeat surgeries are a lot easier if you are not obstructing and it is planned, my second one took quite awhile due to all the scar tissue, plus I had a full hysterectomy at the same time so even with all that I was home in five days and it was so much easier. Hopefully it will be a long time before that might every happen, I went 10 years.
Posted 3/18/2013 11:36 AM (GMT 0)

Well hi and thanks for sharing a story like mine.  In 1990 I had severe abdominal pain on Thursday night.  Thought I was just a baby and waited until Saturday (and tears and pain and doubling over) to go to the ER.  They thought it was a ruptured appendix....opened me up and got a surprise.  I was never treated for gastro issues before that night...we had the "Grant family stomach" as the reason I had trouble with foods and constipation.

I ended up in for 4 weeks post surgery, home for a few days then back in with an abcess - too much "gunk" floating around for too long.  Watch for a fever at all if they did not already advise you of that. 

22 years later I can say I have mostly been in remission with a signfiicant flare up about every 11 years.  I am a lucky crohnnie as I think that surgery put me in this long term remission cycle and I just have been lucky.  Unfortunately, my luck ran out in October and I am still in a flare state.  But, 2 major flares (with careful diet and watching my energy) in 22 years seems like a decent life.

Posted 3/18/2013 9:54 PM (GMT 0)
Habs, I'd agree that two flares in 22 years sounds like a pretty good life. :-) what diet do you follow? I cut out alcohol, sweets, caffeine, fatty/fried food, bread after the surgery. And I'm also doing low residue. We will see how it goes. It's still so early!
Posted 3/19/2013 3:06 AM (GMT 0)
In early 1978 I fully obstructed after 2 1/2 years of multiple temporary obstructions. I don't remember all the details except that I was in pain, blown up like a balloon and vomiting what tasted and smelled like feces. In ER I was told that I had perforated as well.

The insurances weren't so anxious to boot you out of the hospital back then and I spent 6 weeks hospitalized on IVs and an NG tube. I then had an open abdomen resection of 18" of mid-ileum after which I was blessed w/a 20 year remission. Since the return of the Crohn's I've been further blessed w/symptomatic and/or total remission the last 15 years thanks to Imuran and Pentasa.
Posted 3/19/2013 4:35 PM (GMT 0)
20+ years of remission is incredible. Thank you for sharing. :-)
Posted 3/20/2013 12:06 AM (GMT 0)
I had a perforation from an abscess in 2003. Emergency surgery. I have had battles with this disease often but for the most part 10 years later it is a lot more mild. Knock on wood. Hopefully your will settle a bit as well.
Posted 3/20/2013 11:52 AM (GMT 0)
tacom - I don't follow any published diet.  I was just really strict the first two years about adding things back to my diet.  I kept track of things that always bothered me, sometimes bothered me and never bothered me.  I also learned that anything that says 3-4g fiber or more does not agree with me...so I read cereal boxes etc.

I can't say what I eat would work for anyone else, but I do really subscribe to the add things back slowly concept.  It also doesn't hurt that I grew up in a household where salt and pepper were about the only spices and we ate bland foods a lot so I could eat chicken plain & plain mashed potatoes & bread every day and be content (I would worship potatoes if I thought it would not get me put away hehehe).  I eat a lot of starches because that is what agrees with me - I also seem to manage OK with milk/cheese/ice cream so I am lucky there.  I eat next to no fruits or vegetables...I jsut paid the price a few times and it is not worth it to me.  I also find fried foods are a bother, but every once in a while on my best days I can have some.  Other things I just limit - I did not completely cut out caffeine and alcohol until this recent flare (right now almost everything bothers me).  I will go back to the limited coffee and a cocktail or glass of wine with dinner when my tuimmy says OK :-)  Oh...I just recently cut out carbonated beverages after many recommendations to do so---really did help me.  My sister got me to stop chewing gum and that was a big lightbulb moment for me too.

 

Posted 3/21/2013 6:38 AM (GMT 0)
Hi Tacom, my husband is in hospital, he has a massive abscess in the abdomen caused by a perforation (according to the CT scan) he is being treated with antibiotics, as yet he is undiagnosed but the doctors are expecting that he is going to be diagnosed with Chrones disease. I think they think the perforation was caused by diverticulitus...... my husband has actually been too sick to remember much and getting hold of the doctors for me to speak to has been difficult. He might still have surgery but the doctors are trying to take a conservative route because of the fear of sepsis.
Hilary
Posted 3/21/2013 12:40 PM (GMT 0)
Hilary, I'm sorry to hear that. So similar to where I was a few weeks ago, although the doctors did not hesitate on surgery and rushed me off right after the CT showed the perforation/abscess and suspected fecal matter in my abdominal cavity.

It is so normal for your husband to not be remembering things right now. My memory was quite impaired for a while and I had a difficult time keeping anything straight. After the surgery I had entire conversations I had no recollection of having.

It is great you are there for him - he needs you! Be the squeaky wheel and if you feel like something doesn't feel right, speak up. We learned from my hospital stay that you really need to take an active role in your own health.

I, too, went into the ER without a diagnosis. I left with one after the respected tissue was analyzed. Hope you get some answers. Good luck.
Posted 3/21/2013 1:30 PM (GMT 0)
Tacom, my resection was considered emergency surgery despite the 6 weeks on IVs and NG tube since there was no other choice according to Mayo Clinic. I left hospital here and entered Mayo's ER the same day and has my surgery the next day.

After the surgery I asked Mayo about diet, what I could eat, etc. I was told then and it has held true thru the years even to today: eat anything you want, your gut will tell you what it doesn't like.

I've found thru the years that I can only "do" raw veggies in moderation and MUST chew THOROUGHLY no matter what I eat. I can't "pig out" on dairy products such as too much cheese (no pizza two days in a row), sour cream hates me *sigh*. I do have to avoid raw fruits w/skins such as grapes and even the tomatoes they grow today *even bigger sigh*. Apples do a real number on me. I can only eat cooked apples such as apple pie *yea* and applesauce. Whilst so many crave chocolate "I" crave raw celery, raw broccoli, raw cauliflower .... *sniffle* And onions can really do a number on me. Oddly enough FRESH raw onions don't bother me, but once they've been sliced I can only eat them right away after they are cut and whilst I can eat them french fried or even carmelized I've often wondered if maybe it is the type of onion ... I CAN eat an Outback Blooming Onion! HURRAH!!! Well, not the whole thing myself, of course.

I"m really convinced that my blessed success and remission after surgery was due to that 6 weeks on IVs and NG tube getting disease activity into remission PRIOR to the surgery w/no disease activity at the surgical site.

Posted 3/24/2013 11:56 PM (GMT 0)
I was told for years that I just had gastritis. Like "okay little girl, stop complaining." Then this past September, I was having awful awful pain for at least a month. I had tons of diagnoses including cervical infection, constipation, uti, etc...finally I had the worst pain in my life and went to a hospital in a bigger hospital in a big city near me. They did a ct and saw that I had a perforation but thought that I had diverticulitis. They rushed me into surgery. After, they said I had crohns but they only removed about 3 in of where the perforation was. I'm in my senior year of high school, so this changed everything.

So, your recovery will be different than mine since my active crohns remained. They treated that with remicade (which worked perfectly I might add). However, it's now about 6 months post-surgery and I'm having horrible problems. No feeling of irritation, but abdominal pain and constipation. They think that I may have scar tissue left over from the surgery. Or it may be an adhesion from the surgery.

Just something to add, even though they took care of everything, if something doesn't feel right, make sure your doctor knows.
✚ New Topic ✚ Reply