Considering resection for past 2 years

[dvdgrs]

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?

Thanks,
Dave

 

[Dexky]

Welcome Dave! I see you've shopped this around the forum quite a bit. I hope the right person sees it. I'm no help, just saying hello! Good luck!

 

[Jeeknee25]

I've had 3 resections & practically no insides left...I too suffered with strictures that were pumped open with a "Balloon." After 20 yrs. of this, I was in such awful pain I was admitted to the hospital. The doctor performed emergency surgery bc i had been hospitalized for 6 months with NO relief. I definitely don't recommend surgery if you can hold off. They went in and perforated my weakened colon which left me with an ileostomy bag and clinging to life. My body unfortunately did not metabolize well w/ the bag and my potassium & magnesium levels dropped to 1.9 and 2.4. I was kept hospitalized for about 7 solid months with complication after complication. After they resected, more intestine actually kept collapsing which forced them to operate 3 more times. I still struggle today with the physical wounds and mental/emotional wounds. It truly is something you have to understand the risks of. I'm sure many people have had successful surgery, mine however was the worst thing. I wouldn't wish it upon the worst of persons. I just wanted to share my personal story. I'd recommend trying some natural alternatives to help with cramping/pain, digestion. Have you heard of Amp-floracel or coconut oils benefits?
Hope this gives you some useful info.
Stay well!! Stay strong!

 

[beefcake]

I had my ileocecal valve and 16" of intestine removed,mine was an emergency operation,so i didn't have time to ponder on it.
I now have to have B12 injections,and have to take questran daily,without the questran i would never leave the toilet !
If i had your choice,i wouldnt do it,not until you HAD to.It`s been 2 1/2 years since i had mine removed,and since ive been on the questran (2 1/4 years) i havent had diarrhea.
good luck

 

[MaryM]

Do it! You will be glad you did. Sometimes it is the inevitable next step if you have the kind of damage that meeds cannot help.

MM

 

[MaryM]

That should be MEDS....typo.

MM

 

[mrjoe]

well my son had about 14cm taken out along with his ileocal valve about 2 months ago.. It was a 'sorta' emergency so he also didn't have much of a choice.. The dr. that did the operation was just awesome and he is doing fine.. It was done laproscopicly except for about 2" above his naval to get the bad stuff out.. He only has bm's maybe twice a day and things look to be normal. He's gaining weight back and is NOT in pain at this point.. He on 6mp and pentasa with 10mg of prednisone going to 5mg and then 2.5 mg.. Find a good dr that YOU ARE comfortable with.. That means alot.. Hang in there and keep us informed..

/joe

 

[dvdgrs]

Wow! I am almost overwhelmed by how helpful and willing to share people are here on this forum... Thank-You for all your concern and feedback!

I look forward to reading and sharing more insights with you folks as we make our way towards ameliorating the pain and suffering that is caused by this dreadful disease.

Blessings!

 

[beefcake]

for some reason unknown to me,the system wont let me reply to your pm !
:sorry:

 

[dvdgrs]

You can email me at [email protected]

 

[archie]

Hi I had the same surgery 5 weeks ago and also pondered over the same questions you did. I was only diagnosed in May never had any symptoms til then, then suffered a perforated bowel due to a 4cm abscess in June. I didn't have surgery then and was treated with IV AB's but the surgeon always said I would require surgery in the future. Anyway theyy put me on pentasa 4grms and pred 30mgs then tapered which made me feel great but didn't fix the damaged small bowel so I decided to have the surgery. I didn't have diarrhea before hand and 2 weeks post surgery BM were normal (slightly sluggish but once a day) unless I drink alcohol!!. I'm now off all meds and eating a normal diet. I'm not in any pain except occasional muscle strain at surgical site but nothing serious. I'm really glad I had the surgery as they found a carcinoid tumour (low level) on the appendix which hadn't shown up on any of the scans. Hope this id of some help and if you want any more details just ask.

 

[craptastic]

hey dvdgrs, I PM'd you =)

 

[sick-of-crohns]

Hello,
I'm Cintia I'm 30, I was diagnosed with Crohn's in 1999, and I was in the military for a year when I was diagnosed; I never had symptoms until a year after my diagnosis. After that I managed with the flare ups and the shenanigans until 2007 I had a right hemicolectomy. I’ve been on every medication in the planet. In 2009 I got a medical discharge from the military because the Crohn’s was not under control. Now still not in control I just started using Humira, actually took my first shots today (wow those hurt a lot). I’m looking forward to getting some moral support, sheering experiences, and helping when I can help.
Sick of being sick and in pain.

 

[HockeyChick89]

Hi Dave,
I had the exact surgery you are describing 4 years ago. I had my cecum, terminal ileum along with 3 feet of other intestinal tract taken out. Prior to the surgery I had no 'classic' symptoms (diarrhea, bleeding, ect) I only experienced pain. I had the surgery done laproscopically. I had my ups and downs through the recovery but it was a pretty easy go. I was eating day 6 post op and discharged day 7. I did not have diarrhea nor did I have issues with absorption. I was doing decently yet it never did put me into remission even though I was on remicade at the same time (I guess it's not everyone's miracle drug ). Honestly, it was one of the best decisions I made at the time. Even though I'm now looking at a second surgery, it really did fix me up and allow me to enjoy a much better quality of life.