Advice on resection

[Jax]

I was just wondering how many of you have had a resection? What were the circumstances leading up to it. Did you know about it prior or was it emergency surgery? If it was emergency, how did the symptoms present- Did they come on suddenly or was there a gradual build up? Sorry about all the questions, my GI thinks I will need surgery sooner or later. She said emergency surgery is a possibility if I get another obstruction. She also said that I could possibly choose to have a resection to prevent this (She said this is the only way she would feel at all comfortable with me travelling overseas). I am seeing her in 2 days to discuss options so I would like to hear other peoples experiences. I'm pretty new to all of this. My 1 year anniversary of diagnosis is April. I feel fine now. I think I am in remission but my doc thinks it is still rumbling away down there. I;m sick of being told I am sick and can't do things.

Thanks for any info you can give me

Cheers
Jackie

 

[crohnsmom]

resection

Dear Jax,
My son had resection surgery of the small intestine in May of 2007. He was diagnosed in January of that year, and had already suffered damage from extensive stricturing in the area of the terminal ileum, as well as having an abscess there. His surgery was scheduled for late May since he is a college student and wanted to complete the semester. The surgry went off without a hitch-much smoother sailing than the pain filled months leading up to it. He was eating in 48 hours, never needed an NG tube, and was released to a step down facility at the University in 4 days. 8 days post surgery we were able to celebrate his birthday in the best Italian restaurant in town! 10 weeks later he was touring Great Britiain on summer break! Now almost 2 years later he remains in remission-hoping for a long one!
I can honestly say for him surgery was the best option at the time. Every situation, however is different. Wishing yu the best,
Sincerely,
Ramona

 

[PENWESTERN]

I am having an elective resection on Wed. I had a partial blockage in November and it nearly killed me. I had all the GI tests and recovered. During this time my Dr. set up a consult with a Surgeon. I understand the mortality rate is about 1% for a planned resection but can be as high as 40% if a small bowel blockage needs to be treated under emergency conditions. I am in no pain right now and wonder if I am doing the right thing. I have had crohns of ileum since 1999 and the stricture was discovered in 1999. Today it is fibrous and ulcerated. It is too large for a strictureplasty so that is why the laproscopic resection. Someone told me to do it before the stricuture enlarges or blocks. Hope this helps. I will write afterwards with an update.

 

[D Bergy]

I had a resection about two years ago. I was to the point of slowly starving to death, so I really had no other options. I was diagnosed a couple of weeks prior to that. While it was a scheduled procedure, it probably was pretty close to an emergency situation. The docter did not even want to talk about what kind of rotten junk he found behind the stricture.

The surgery went without a hitch, and the worst part was being stuck in the boring hospital with little to do. I was walking the next day dragging a catheder.
They told me that it was unusual to be up and about so early, but I am not one to lay around as I am an active person.

I actually felt much better the moment I woke up from surgery. I would agree that you do not want an emergency resection if that can be avoided. I would find out who the surgeon is and what the hospital staff's opinion is of his work. I felt much better after several people told me they had my surgeon work on them. The nurses always know who the better ones are.

I am really happy I had it done, but I am trying like heck to avoid the need for another one.

Good Luck

Dan

 

[Kev]

Mine wasn't an emergency, but an 'urgent' resection.. my disease had progressed so fast it shocked the surgeon.. instead of a couple of inches I ended up with 1 n 1/2 feet being removed. The resection itself was a breeze.. I felt better from the day of the operation.. and my recuperation period was the best I felt in years. It seems 'foolish' to rush into surgery (thats what logic tells us, right?) but having the opportunity to look back with 20/20 hindsight, if I'd had my operation sooner, I would have ended up keeping more of my GI tract intact. We can have N survive numerous operations (tho no one looks forward to the idea) but we only have a limited supply of tract to play with. If your doc recommends surgery, then theres a pretty good chance its in your best interest to do it sooner versus later. We all fear surgery before hand, which typically is the cause for many of us delaying it, and delaying it, and delaying it, until the surgery we finally are forced to have is far more extensive than it may have been. Just bear in mind that there is no cure to this disease, just some options in treating it. And I'd expect that your doc is suggesting your best option now.

 

[Jax]

Thankyou all so much for your replies. For some reason I had always assumed that most resections were emergency. I have got some more questions to ask my doc tomorrow. It feels very weird to be considering surgery when I feel fine. I get ultrasound results and blood results tomorrow so I will know if I am in remission or if it is time for the chop. I think I want the strictured part cut out so I get a few years break from this *******.

Penwestern- Good luck with your surgery- I hope it makes you feel great!

Thanks again guys

 

[Juls]

Hey Jax,

I know that if I knew then what I know now, I would have gone for the resection in a heartbeat. I was having pretty bad obstructions and they had considered surgery, but I wasn't quite ready yet and I thought I was getting better, so I stuck it out. Big mistake - I got a blockage so bad that my intestine ruptured and I had to have emergency surgery and woke up with an ileostomy for 8 months.

Don't worry - I'm sure I was an unusual case. I just know that if I could have had a simple resection and avoided the the rest I would have definitely. And if you are healthy going into the surgery your recovery should be a breeze......so I would say go for it. But if you don't - just be really careful about blockages and get to the hospital as soon as you feel one coming on as to avoid anything serious from happening...

Juls

 

[Jax]

Thanks again for all the replies. I went to see my doc and the news was actually good.... I am in remission. My crp is down from 220 last April to 2! I'm stoked. All inflamation is gone and the scar tissue isn't as bad as first thought. Travelling is even on the cards again. I had to promise I wouldn't flee the country this year though. I suppose I can be patient. Still wouldn't mind any dodgy bits of intestine chopped out before i head off though. I am going back in July for a colonoscopy (just for ***** and giggles) So I just have to stay well this year and I have my docs blessing to travel...No pressure

Thanks again for the advice this site is great...

 

[Neednewgut]

What is crp?

 

[Jax]

It stands for c-reactive protein. It is an inflammatory marker in your blood. A normal reading is between 1 and 5. It is a common blood test to gauge if your crohns is active. There is another one called ESR- can't quite remeber what that one stands for. That's about as in depth as my medical knowledge gets but hope that helps

 

[PENWESTERN]

Resection though I was not in any pain...

I had a resection last Wed. I was feeling fine when I went in. I wondered if it was even necessary. I was not in pain at all.

Surgeon planned to remove six inches but removed twelve stating that my intestines were fourtimes the normal size and had active inflammation. He said it would never have improved even with all the meds I take.

Sometimes we need surgery even though we think we are doing fine and that we do not need it.

Both my doctor and my surgeon recommended it.

I am glad I did it and now hope to keep my healthy ends from the dreaded inflammation. There will be many more meds for me for maintenance.

 

[Christiebird]

Hey Jax

You've had loads of replies but I think where crohns is concerned you can never have too much info!

I had a resection on 30th June this year. I had a call on the Thursday and they told me I was coming in for it on the Tuesday. I wasn't emergency, I just wasn't getting on very well without it...

I had it done on the Tuesday afternoon and discharged myself on the Thursday morning - pretty good going. I was lucky though as I had it done keyhole. I had an incision on the left above my hip, one just above my mini, one through my belly button and then the big boy on the right hand side.

I had a foots worth removed and my surgeon was fantastic. I am still struggling at the moment if Im honest as my symptoms are still fairly rotten a lot of the time BUT I have had episodes where I've got up to 3 days without the D!

I do so hope that if you have to have it you make a speedy recovery. My one tip to you....get out of hospital as soon as you can because being in there just makes you feel crappier!!! Oh and always keep a pillow with you for when you need to sneeze or cough - it reallyhelps!!!!

 

[dvdgrs]

Anyone been considering resection for 2 years or more?

For the past two years, I have been contemplating the surgical resection of a 15 cm long stricture that is proximal to my ileo-ecal valve. I was first diagnosed with Crohn’s 20 years ago after being treated surgically for a peri-anal abscess. As far as I can remember, my stomach problems began at age 7 when I was treated with high doses of penicillin for Lyme Disease.

I was even scheduled for surgery at Stanford, but changed my mind a week before. I am really concerned about losing the ileocecal valve. It seems important. I would like to talk with more people who have had the surgery. I would like to know their state before and after the surgery. Mostly, I am concerned about diarrhea. Currently, I have a bout once a month, usually when I am stressed out and not eating well.

I am worried that if I have the valve removed, I will have much more frequent diarrhea. The trade-off is that now, I am kept awake by cramping several nights per month. I also wonder if I would have a lot more energy if I go ahead and get the surgery. The problem is that there is no going back.

Has anyone else agonized over this decision like me?
I would like to know anyone with this sort of personal experience?