Regrets on having Diverticulitis surg...

Regrets on having Diverticulitis surgery/colon resection?

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Since: May 12

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#1 May 21, 2012
Hello, I am new to this board. I have just had my third attack of diverticulitis in 4 years. I was in the hospital for 3 days on iv antibiotics and am now home feeling much better ( 90% pain free) and on a low residue diet.

All my doctors except my brother who is an Internist tell me to have the colon resection surgery before I have another attack and it is much more dangerous.

My brother believes that complications ( perforation, damage to surrounding organs, etc.) can occur with the surgery.

My question is this:

Has anyone regretted having the surgery and why?

Thank you!

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George

Bangor, ME

#2 May 21, 2012
My advice to you is to consider the complications that could arise if you don't have the surgery. This disease will not cure itself. Some can control it but all it will take is one bad attack with an abscess and/or perforation to ruin your whole day. You have to weigh all risks, and I would do this in consultation with a colo-rectal surgeon and not an internist--brother or not

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DianaL

United States

#3 May 21, 2012
I agree with George. There are several people I know who have been having bouts for years. They are afraid to have the surgery yet they are afraid of having another attack and being hospitalized, afraid to eat most foods and have been on endless rounds of antibiotics.

I had the surgery 6 months ago. I was back at the gym swimming at 2 months and running at three months. I have no upset stomach anymore, can eat what I like and have no fear.

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Rose

North Hampton, NH

#4 May 22, 2012
I too felt that NOT having the surgery was infinitely more dangerous than having it. Every surgery has a small percentage of complications, but I don't see that as a reason to avoid it. I had my surgery a month ago and I feel completely fine. It's as if it never happened. I had it on Monday, home on Friday, a week at home recuperating, and back to work the following Monday. Granted I work at home in front of a computer, but I did my 32 hrs without any problem. I feel free. I don't have to worry about being sick, taking horrible pills, chancing a perforation or a colostomy after an emergency surgery. There is always someone who is a Negative Nellie. My husband had a gastric bypass for weight loss 3 yrs ago. You should hear the negative comments on THAT one. It did not deter him. He is now a 210 lb healthy man instead of a 350 lb man about ready to watch his health go down in decline (he's in his late 40s, was still healthy but for how much longer?). So I would do your own research, see a surgeon, gather the information on your own, and make your decision on your own. It IS really a very safe surgery from all the reading that I did. Even people who are pretty old can do fine. I decided that walking around with a constant infection could not possibly be good for my health, so I had to make the decision to move forward.

Since: May 12

Location hidden

#5 May 22, 2012
Rose wrote:
I too felt that NOT having the surgery was infinitely more dangerous than having it. Every surgery has a small percentage of complications, but I don't see that as a reason to avoid it. I had my surgery a month ago and I feel completely fine. It's as if it never happened. I had it on Monday, home on Friday, a week at home recuperating, and back to work the following Monday. Granted I work at home in front of a computer, but I did my 32 hrs without any problem. I feel free. I don't have to worry about being sick, taking horrible pills, chancing a perforation or a colostomy after an emergency surgery. There is always someone who is a Negative Nellie. My husband had a gastric bypass for weight loss 3 yrs ago. You should hear the negative comments on THAT one. It did not deter him. He is now a 210 lb healthy man instead of a 350 lb man about ready to watch his health go down in decline (he's in his late 40s, was still healthy but for how much longer?). So I would do your own research, see a surgeon, gather the information on your own, and make your decision on your own. It IS really a very safe surgery from all the reading that I did. Even people who are pretty old can do fine. I decided that walking around with a constant infection could not possibly be good for my health, so I had to make the decision to move forward.
George, Diana and Rose, Thank you all for your feedback. I agree, living in fear for another attack is quite unsettling. I definetly will follow your advice. I have always dreaded surgery of any kind, and since I come from a family involved with medicine, I have always been told by them (mother is a nurse, husband is an executive for a large medical company and then of course my brother) that surgery should always be the last option.

I have also read of people who after having a colon resection procedure developed another attack of diverticulitis from a portion of the colon that was not removed.

I wish I could close my eyes and have it disappear but that is not reality and I must deal with the reality. Again, thank you all!
Rose

North Hampton, NH

#6 May 22, 2012
monicactalking wrote:
<quoted text>
George, Diana and Rose, Thank you all for your feedback. I agree, living in fear for another attack is quite unsettling. I definetly will follow your advice. I have always dreaded surgery of any kind, and since I come from a family involved with medicine, I have always been told by them (mother is a nurse, husband is an executive for a large medical company and then of course my brother) that surgery should always be the last option.
I have also read of people who after having a colon resection procedure developed another attack of diverticulitis from a portion of the colon that was not removed.
I wish I could close my eyes and have it disappear but that is not reality and I must deal with the reality. Again, thank you all!
Yea, I would agree that surgery should be the last option, but this ugly disease leaves many of us with no other option. And in my case I "thought" I was healthy in between attacks, but turns out I was not. My surgeon said some people have a smouldering case all the time and the antibiotics only tame it down enough so that you feel better and maybe are not in pain, but you are still sick. I started running platelet counts in excess of 500,000 which is pretty high. Turns out it was the infection doing that to me. So not only was I infected but I was putting myself in more danger of a blood clot. We are all individuals and the decision to have surgery has to be individual too, but just beware of the prejudices that people may have who are giving you advice. This should be between you, your spouse (if married), and your doctor. That's how I handled it. Fortunately my entire family was so afraid for my health if I did NOT have the surgery that I had full support. Good luck to you!

Since: May 12

Location hidden

#7 May 22, 2012
Rose wrote:
<quoted text>
Yea, I would agree that surgery should be the last option, but this ugly disease leaves many of us with no other option. And in my case I "thought" I was healthy in between attacks, but turns out I was not. My surgeon said some people have a smouldering case all the time and the antibiotics only tame it down enough so that you feel better and maybe are not in pain, but you are still sick. I started running platelet counts in excess of 500,000 which is pretty high. Turns out it was the infection doing that to me. So not only was I infected but I was putting myself in more danger of a blood clot. We are all individuals and the decision to have surgery has to be individual too, but just beware of the prejudices that people may have who are giving you advice. This should be between you, your spouse (if married), and your doctor. That's how I handled it. Fortunately my entire family was so afraid for my health if I did NOT have the surgery that I had full support. Good luck to you!
Thank you again Rose! I will think about it hard and long.
When I started getting a little depressed I think of all the people who have much great illnesses and we are fortunate that we have options.

Again, my deepest thanks.
Monica
veronica

York, UK

#8 May 22, 2012
im just ut of hospital today coz of a bad bleed i get no warnin or no pain thank god but it mrans i cant plan i worry coz of surgury my doc said there are risks even death im really down about it has any one else experienced this
Gillian

Harrow, UK

#9 May 22, 2012
Monica, I am one of the very, very rare people who have had complications from the surgery -BUT - I still do not regret having the operation.

The complications I, or indeed, other people, may suffer from after the surgery can certainly
be annoying or even cause discomfort. But, none of them are life threatening - Unlike DD, which can be.
Mom

Kansas City, MO

#10 May 22, 2012
I had the surgery in April. I have had a variety of complications that have required remission to the hospital. Now I am at home with home health. I have to have a second surgery in a couple months or so.

Do I regret having the surgery? Ask me next month as right now I'm in the throws of all this.

I would say talk to your GI guy, and your surgeon. Take your brother with you. He can get his concerns addressed and that should reduce your tension levels. Weigh your options.

Since: May 12

Location hidden

#11 May 22, 2012
Mom wrote:
I had the surgery in April. I have had a variety of complications that have required remission to the hospital. Now I am at home with home health. I have to have a second surgery in a couple months or so.
Do I regret having the surgery? Ask me next month as right now I'm in the throws of all this.
I would say talk to your GI guy, and your surgeon. Take your brother with you. He can get his concerns addressed and that should reduce your tension levels. Weigh your options.
I am so sorry that you will require another surgery. Also that you had to have remission to the hospital.

Would you be willing to share your experiences with me? I do not personally know of anyone that has had the surgery and would be most grateful.

Thank you.

Since: May 12

Location hidden

#12 May 22, 2012
Mom wrote:
I had the surgery in April. I have had a variety of complications that have required remission to the hospital. Now I am at home with home health. I have to have a second surgery in a couple months or so.
Do I regret having the surgery? Ask me next month as right now I'm in the throws of all this.
I would say talk to your GI guy, and your surgeon. Take your brother with you. He can get his concerns addressed and that should reduce your tension levels. Weigh your options.
Thank you Gillian. I have an appointment with my GI and then with a nutritionist for next week. I am excited to hear what both of them say.
Mom

Kansas City, MO

#13 May 22, 2012
monicactalking wrote:
<quoted text>
I am so sorry that you will require another surgery. Also that you had to have remission to the hospital.
Would you be willing to share your experiences with me? I do not personally know of anyone that has had the surgery and would be most grateful.
Thank you.


Until last summer, I would have not known what diver was. Thought I had a tummy bug and when the pain got unreal, I went to the ER and found myself admitted with a diver diagnosis. Four days of IV antibiotics and the home on oral meds for 10 days that made me dog sick. Had a colonoscopy a month later. All was clear. Had a mild flare in September....oral meds...no hospital....sick as a dog from the meds. Then this Spring, all he'll broke loose. I was in the hospital with diver attacks twice with in a month. I had developed a perforation and an abscess and a fistula to go with it. I was in the hospital 10 days at that point. Surgery became my only option. My surgery was at the end of April. I have a temporary illiostomy and a tunneled wound very close by. We had hoped that by waiting til the end of April I wouldn't need an ostomy, but I was such a smoldering mess in there.... The surgery itself wasn't bad. They did it lap, but my surgeon had the urologist put stents in my ureters so as to make them easily visible and thus protected. I was asleep so I didn't care. The pain was pretty intense but they give you good drugs--makes that part manageable. The bag is a HUGE pain and half of why I had to be readmitted as let's just say ostomy bags are not one size fits all and I was more like no size fits me so my skin was a nightmare as digestive juices digest whatever they find handy and if it's your skin..... Plus I have the wound that has to heal before we can take down the illiostomy.

Please remember I am in the throws of all this right now so.....in a month or so when hopefully I am on the other side of this craziness I won't be quite so adled about it. The person to listen to is Gillian. She's been through it and back. She's smart and she really has a good knowledge base.

Since: May 12

Location hidden

#14 May 23, 2012
Mom wrote:
<quoted text>
Until last summer, I would have not known what diver was. Thought I had a tummy bug and when the pain got unreal, I went to the ER and found myself admitted with a diver diagnosis. Four days of IV antibiotics and the home on oral meds for 10 days that made me dog sick. Had a colonoscopy a month later. All was clear. Had a mild flare in September....oral meds...no hospital....sick as a dog from the meds. Then this Spring, all he'll broke loose. I was in the hospital with diver attacks twice with in a month. I had developed a perforation and an abscess and a fistula to go with it. I was in the hospital 10 days at that point. Surgery became my only option. My surgery was at the end of April. I have a temporary illiostomy and a tunneled wound very close by. We had hoped that by waiting til the end of April I wouldn't need an ostomy, but I was such a smoldering mess in there.... The surgery itself wasn't bad. They did it lap, but my surgeon had the urologist put stents in my ureters so as to make them easily visible and thus protected. I was asleep so I didn't care. The pain was pretty intense but they give you good drugs--makes that part manageable. The bag is a HUGE pain and half of why I had to be readmitted as let's just say ostomy bags are not one size fits all and I was more like no size fits me so my skin was a nightmare as digestive juices digest whatever they find handy and if it's your skin..... Plus I have the wound that has to heal before we can take down the illiostomy.
Please remember I am in the throws of all this right now so.....in a month or so when hopefully I am on the other side of this craziness I won't be quite so adled about it. The person to listen to is Gillian. She's been through it and back. She's smart and she really has a good knowledge base.
First of all, thank you for sharing. You have been through alot. I am so sorry that you have had to endure so much pain and time away from your home and family. I will be thinking and praying for you to have a complete recovery .

You have given me alot to think about and I cannot thank you enough. Please know that there are people like me that have felt your pain ( of course I have not had a perforation or absces).

All my best to you! Monica
Katie

Hadley, MA

#15 Jun 4, 2012
Yikes! My heart is pounding after the last post! I am having the surgery in two weeks after having 6 attacks in 3 years, I have to say I am terrified! I know 2 folks that have recently had the procedure and did very well, however that does not rest my mind.
Rose

North Hampton, NH

#16 Jun 4, 2012
Rest your mind.. It was just about the easiest thing I've gone through, considering how major of a surgery it is. I would do it 100 times again if it stopped this disease. Postop pain control is excellent these days, nothing like the old days when they made you wait hours for a shot of Demerol in your butt. I suffered way worse after my C-section 18 yrs ago. I was not in pain, was not nauseous, and fortunately had a surgeon that didn't automatically ram an NG tube down everybody's nose, considering only a tiny percentage of people ever have a need for stomach decompression after this particular surgery. So I was quite comfortable. I relaxed, watched TV, read my book, and slept - for 5 days. The best rest I've had in years! LOL Now, only 6 wks later I am TOTALLY back to normal, back to work full-time after 2 wks, and feeling great. Try to relax because I think that helps too. Let us know how you do!
zeddman

Waltham, MA

#17 Jun 14, 2012
Hey Monica -- just wanted to add my thoughts...

When you are ready and want the surgery is when you should have it. I fought like hell for 8 years -- I couldn't believe my body was letting me down and always thought that I could control it through eating this/not eating that, drinking more water, more fiber, blah blah blah. I finally came to the realization that I couldn't control it and it was starting to control me.

The final kicker were the meds -- I just couldn't stand the thought of having to do more cypro and flagyl....they were destroying me. Seriously, I believe they are poison...

Had my surgery April 2011 and haven't looked back. Best thing I've ever done, but I'm glad I waited until I was sure there was nothing else I could do.

I wrote a long post May 2011 called "success story" - might answer some questions for you.

Ask away if you have any more. Good luck!

Tom

Since: Apr 12

San Juan Capistrano, CA

#18 Jun 14, 2012
Hi Monica,

First, I am 3 months post op from my colon resection...and for a very long time I put it off thinking I could control the attacks by diet etc. As Zeddman above, and many others on here...it didn't work out like we wanted.

After my first attack it was 2 years before I had another. Then another 2 years until another one. Then, they got a bit more frequent, even by watching every little thing I put in my mouth. A little over a year ago they got so frequent that for the next 12 months I didn't have a 2 week period where I was healthy. I was either having an attack or recovering from it. And the meds? YUCK! No quality of life!

Hoping you are able to control it by diet and not surgery, but the surgery is nothing to be scared of. Sure, there are potential complications, I ended up with a few while recovering in the hospital. 3 months after surgery I am not 100% yet, but I am probably 85-90%(and increasing every week)...I feel better than I have in a long time.

If I had it to do again, I would have had the surgery much sooner than I did. That's just me though. I'm sure you and your doctors will find the solution that works best for you. Best of luck!

Dave

Since: May 12

Location hidden

#19 Jun 14, 2012
zeddman wrote:
Hey Monica -- just wanted to add my thoughts...
When you are ready and want the surgery is when you should have it. I fought like hell for 8 years -- I couldn't believe my body was letting me down and always thought that I could control it through eating this/not eating that, drinking more water, more fiber, blah blah blah. I finally came to the realization that I couldn't control it and it was starting to control me.
The final kicker were the meds -- I just couldn't stand the thought of having to do more cypro and flagyl....they were destroying me. Seriously, I believe they are poison...
Had my surgery April 2011 and haven't looked back. Best thing I've ever done, but I'm glad I waited until I was sure there was nothing else I could do.
I wrote a long post May 2011 called "success story" - might answer some questions for you.
Ask away if you have any more. Good luck!
Tom
Tom, Thank you so much for writing and sharing your journey to recovery from this disease. I am very happy that you are now infection and antibiotic free. Not to mention pain free. Hurray!
Everyday I am a little closer to scheduling my colon resection surgery. I just have to meet with two more surgeons and another gastroenteroligist.

I had my first attack four years ago and the second and third during these past 6 months. It has put my life on hold. I am afraid of the next one.

Again, your thoughts and experience is very much appreciated! A big thank you!

Since: May 12

Location hidden

#20 Jun 14, 2012
DaveH1110 wrote:
Hi Monica,
First, I am 3 months post op from my colon resection...and for a very long time I put it off thinking I could control the attacks by diet etc. As Zeddman above, and many others on here...it didn't work out like we wanted.
After my first attack it was 2 years before I had another. Then another 2 years until another one. Then, they got a bit more frequent, even by watching every little thing I put in my mouth. A little over a year ago they got so frequent that for the next 12 months I didn't have a 2 week period where I was healthy. I was either having an attack or recovering from it. And the meds? YUCK! No quality of life!
Hoping you are able to control it by diet and not surgery, but the surgery is nothing to be scared of. Sure, there are potential complications, I ended up with a few while recovering in the hospital. 3 months after surgery I am not 100% yet, but I am probably 85-90%(and increasing every week)...I feel better than I have in a long time.
If I had it to do again, I would have had the surgery much sooner than I did. That's just me though. I'm sure you and your doctors will find the solution that works best for you. Best of luck!
Dave
Hi Dave,

As I wrote to Tom, I cannot thank you enough for sharing your experiences and actions regarding this disease. Your imput is extremely helpful and I feel very fortunate that there are people like you that generously share their time with people like me.

You have given me a lot to think about and it all has been positive. Thank you Dave!

Monica

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