so stressed..need advice

Posted in the Diverticulitis Forum

mare k

Toms River, NJ

#1 Aug 6, 2013
I'm sitting here wondering if I should schedule the surgery. I found an excellent highly skilled laparascopoic surgeon with 27 years experience and he is Chief of colon rectal surgery- board certified.

When I met with him on Aug. 1st- he reviewed my history of my previous attacks and said that because they were "uncomplicated" that I could wait to have the surgery as my chances of needing emergency surgery for a future attack was 1 in 250.(low odds). But he did say That I will definitely have another attack and it didn't matter how much fiber I ate..it will happen.

But why should I rush into having major surgery when he said I could wait???

I keep going back and forth with my decision and am going crazy. My whole family wants me to have it and put it behind me.

any advice gladyly welcomed!!
bcalvanese

Bensalem, PA

#2 Aug 6, 2013
in my case the attacks got worse each time. the attack i had before the last one took a month to clear up. the one before that about 2 weeks. the one before that about a week.
my last attack took 2 months, and still was not 100% cleared up before the surgery, but cleared up enough not to have to wear a bag for 3 to 6 months and then have another surgery (lucky).
i think if i had gotten the surgery sooner, they may not have had to take a whol foot of my colon.
once you start getting these attacks, you will most likely keep getting them, and they will get worse (and destry more tissue) each time.
the choice is yours and surgery is a scairy thing, but if you are going to need it anyway, i think it would be best to get it done sooner rather than later.
the choice is yours, and i am not a doctor, but i can speak from my own experience.
i think if i would have waited after my last attack, it would have probably burst resulting in emergency surgery, and wearing a bag for 3 to 6 months, and then another surgery. and that is if i lived through the emergency surgery.
i know it's stressful, but it's a decision you'll have to make.
good luck
mare k

Toms River, NJ

#3 Aug 6, 2013
bcalvanese wrote:
in my case the attacks got worse each time. the attack i had before the last one took a month to clear up. the one before that about 2 weeks. the one before that about a week.
my last attack took 2 months, and still was not 100% cleared up before the surgery, but cleared up enough not to have to wear a bag for 3 to 6 months and then have another surgery (lucky).
i think if i had gotten the surgery sooner, they may not have had to take a whol foot of my colon.
once you start getting these attacks, you will most likely keep getting them, and they will get worse (and destry more tissue) each time.
the choice is yours and surgery is a scairy thing, but if you are going to need it anyway, i think it would be best to get it done sooner rather than later.
the choice is yours, and i am not a doctor, but i can speak from my own experience.
i think if i would have waited after my last attack, it would have probably burst resulting in emergency surgery, and wearing a bag for 3 to 6 months, and then another surgery. and that is if i lived through the emergency surgery.
i know it's stressful, but it's a decision you'll have to make.
good luck
Thank you..That's good advice. I did force myself to schedule the surgery for Sept. 16th. Still a nervous wreck but I know it has to be done.
NJ John

Cherry Hill, NJ

#4 Aug 6, 2013
mare k wrote:
<quoted text>
Thank you..That's good advice. I did force myself to schedule the surgery for Sept. 16th. Still a nervous wreck but I know it has to be done.
Mare - look at it this way. Both your gastro and the surgeon said you WILL have another attack. When, nobody knows. Sure the risk of emergency surgery is low. But the longer you wait, the more likely it is that the diseased area will get larger. Too large might affect the lap vs. Open decision in the future. You don't want open if you can avoid it. You are optimally situated for the least invasive surgery you can have right now. Stay true to tonight's decision and end this flip flopping. Get it done. Waiting only makes the surgery harder and more risky. Given a choice to do it all over again, I would still have surgery - but I wouldn't wait like I did and lose the chance at lap. I have a 9 1/2 inch reminder of what waiting cost me.

You can do this. You are informed and educated - hang in there and take a break from here for a few days. Then time you are spending here has a lot to do with your stress.

Since: Apr 13

Glendale, AZ

#5 Aug 7, 2013
mare k wrote:
I'm sitting here wondering if I should schedule the surgery. I found an excellent highly skilled laparascopoic surgeon with 27 years experience and he is Chief of colon rectal surgery- board certified.
When I met with him on Aug. 1st- he reviewed my history of my previous attacks and said that because they were "uncomplicated" that I could wait to have the surgery as my chances of needing emergency surgery for a future attack was 1 in 250.(low odds). But he did say That I will definitely have another attack and it didn't matter how much fiber I ate..it will happen.
But why should I rush into having major surgery when he said I could wait???
I keep going back and forth with my decision and am going crazy. My whole family wants me to have it and put it behind me.
any advice gladyly welcomed!!
To me, surgery is the last resort. I went to two specialists, in the field, and both told me not to have surgery. They told me it will change my life. My first,(serious one) and last attack, was in Dec 2012, that landed me in the hospital, all because I didn't recognize the symptoms. Now I know them well. I have changed my diet too. Cut out all gluten, caffeine, and dairy. These were triggers for me, not for all. Doesn't matter how much fiber you eat, if you are sensitive to certain foods, it will irritate your intestines, and cause a flare-up. I eat healthier now, dropped 10 pounds I didn't need, and avoided surgery. No way did I want to walk around with a colostomy bag. That in itself, causes more problems.
Good luck, and make the choice that is right for you. Don't listen to anyone, but yourself.

Since: Jun 13

Location hidden

#6 Aug 7, 2013
I delayed my surgery for 1 1/2 years thinking I might be aable to "control" it. I tried everything, nothing worked. Finally my life was totally controlled by the Divertic, it decided wht I could eat, when to go out, when to go to work, the Divertic ruled my life. Over the years my attacks always cleared up with Cipro/Flagyl until my last attack (my worst one), which put me in the ER for the first time. I finally got the surgery and was to be Lapro, had to be open surgery due to so much damage from all the previous attacks. My Dr was very surprised at the condition of the outside of my colon because from the colonoscopy, she couldn't see much damage, but once in there, I was a mess. My Sigmoid attached to my abdominal wall and my small intestine, even my Appedix had to go because of damage. Each attack causes damage and scar tissue to develop increasing the chances of adhesion or other problems. I had my surgery 1 month ago and feel it was the best decision I made in a very long time. I was terrified but this site got me through it. And today I am eating what I want, having normal BMs, no left side pain, I feel amazing. My Dr gave me my life back and I am so grateful...
I wish you all the best in your decision, it was really hard for me to schedule the surgery and I had 2 Dr's saying to do it, so I understand the wanting to delay, specially when you have a Dr saying you can wait, but I am living proof that waiting might not be the best thing as the damage continues to worsen with each attack.
Best wishes to you.
mare k

Toms River, NJ

#7 Aug 7, 2013
First I want to say thank you to all who responded to my post. I read all of your posts 2 and 3x each.

To: NJ John-Your post makes a lot of sense. I HAVE to stop this flip-flopping.. it's stressing! AND I certainly don't want to wait and then have open.

To:Dive: Glad to hear that you have avoided surgery. I know the decision is mine and only mine :)

To Ed: Your post is an eye-opener ! Being on cipro and flagyl made me sick and it took my body a few weeks to recover and get back to normal..not to mention how ..right now... I am afraid to eat certain foods. And knowing that the drs. are certain I "will" have another attack is something I'm not looking forward to. What if I'm on vacation on an island?? Could be very scary!

So after weeks of thinking and rethinking.. I plan to move forward with the surgery on Mon. Sept. 16th. I have to focus on the positives now.
Again..appreciate everyone's input..Thank you :)

Since: Jan 12

Stuart, Florida

#8 Aug 7, 2013
mare k wrote:
I'm sitting here wondering if I should schedule the surgery. I found an excellent highly skilled laparascopoic surgeon with 27 years experience and he is Chief of colon rectal surgery- board certified.
When I met with him on Aug. 1st- he reviewed my history of my previous attacks and said that because they were "uncomplicated" that I could wait to have the surgery as my chances of needing emergency surgery for a future attack was 1 in 250.(low odds). But he did say That I will definitely have another attack and it didn't matter how much fiber I ate..it will happen.
But why should I rush into having major surgery when he said I could wait???
I keep going back and forth with my decision and am going crazy. My whole family wants me to have it and put it behind me.
any advice gladyly welcomed!!
Mare at this point in time do you have insurance ? with all that is going on you may not have it for long and maybe not be able to have the surgery so this is some thing to think about also it is also better to have the resection when you and feeling good and have your strength to work on your side ... God Bless and may he hold your hand on your feeling on this operation

Teddy Bear Hugs
Larry
mare k

Toms River, NJ

#9 Aug 8, 2013
Thanks Larry for the teddy bear hugs:). Fortunately I do have health insurance.

You're right-- to have the surgery when I am strong and feeling good.

Thank you for your post :)
Coroner66

San Bernardino, CA

#10 Aug 8, 2013
I can relate to you! On my second admission to the hospital, I was told that the bouts that I suffered too close together was an indicator for cancer. I had to wait 6-8 weeks after the bout to perform a colonoscopy. You can have a colonoscopy too soon after the flare up because the gas that is used during the colonoscopy can perforate your bowel. Fortunately, the colonoscopy revealed diverticulosis, meaning I still have the stool stuck in the pouches (diverticula) but they were asymptomatic.
I encourage you to seek other natural avenues to retain you bowel. Please see my post that I submitted to give you the details. What the surgeons don't tell you that you can have complications from the surgery or that you will still have diverticulitis problems! I know people who had the surgery is regretted it. It seemed that they had more problems than before. I wish you the best.
DianaL

Vallejo, CA

#11 Aug 8, 2013
I have to correct you Coroner (maybe not the friendliest handles, eh?), there are THOUSANDS of posts on here over HUNDREDS of threads and though there are some who don't fare so well post surgery, I would say it's maybe 5%. These same people who had the surgery - even following a healthy regimen, could have a far poorer outcome without this surgery, death. You seem to understand this in your other post yet in this one, it sure sounds like you are trying to scare Mare.

Great for you that it is working - until it doesn't. For almost all this disease does not go away but smolders. Then if it blossoms it can quickly turn deadly.

Sure I didn't want to be cut open, I knew the risks but I would not be alive without this surgery, I know this to be true. The sad thing is a CT scan or Colonoscopy rarely tells the full story and usually there are surprises when they go in.

1 year and 8 months since my surgery and am in good health. For many of us we had the smoldering infections that cause a systemic illness which came on gradually. We didn't know how bad we felt until the disease was cut out. Now there's no more disease and a less than 5% of re-occurrence.

Just wanted to have my word here. I am very grateful to be disease free!
mare k

Toms River, NJ

#12 Aug 8, 2013
DianaL.- thanks for your post. It was what i needed to read esp. the rate of reoccurrence. And I didn't realize that the CT scan and colonoscopy don'ttell the full story. So glad you are in good health and disease free!!
DianaL

American Canyon, CA

#13 Aug 8, 2013
Backatcha Mare. For what it's worth, I had 4 CT scans over three months and though they showed there was an abscess, what they didn't show was it was grapefruit sized and attached to the back of my bladder! Also, they don't show scar tissue, fistulas, webbing, etc.

We are fortunate in that once the disease is cut out, almost all go on to live normal lives.*happy dance*

We're here cheering you on whatever you chose to do. There's a wealth of hard-won knowledge on here from people who know too well the pain, fear, exhaustion and hope.

Since: Jun 13

Location hidden

#14 Aug 9, 2013
DianaL wrote:
Backatcha Mare. For what it's worth, I had 4 CT scans over three months and though they showed there was an abscess, what they didn't show was it was grapefruit sized and attached to the back of my bladder! Also, they don't show scar tissue, fistulas, webbing, etc.
We are fortunate in that once the disease is cut out, almost all go on to live normal lives.*happy dance*
We're here cheering you on whatever you chose to do. There's a wealth of hard-won knowledge on here from people who know too well the pain, fear, exhaustion and hope.
Very true DianaL, my Dr thought my surgery was going to be a cake walk. She was so sure that my damage was limited just a small constricted area, but once inside she was shocked at all the additional damage that didnt show on CT, colonoscopy, cystoscopy, Hida scan or x-ray. I had the same issues, bad scar tissue, fistulas to my bladder, webbing to my pelvic wall, even infected my appendix from all the transient inflammation going on. Caused my Lapro to be changed to open mid-surgery, so I have 3 Lapro holes to go along with my long incision.
Even a light attack is causing inflammation which over time leads to all the additional problems. Now I know why my CRP blood test was always so high and they could never figure out why... I believe it was because I ALWAYS had a lingering Divertic infection and it would flair to attacks every so often, but im sure I was always smoldering inside.
evey

Orange City, FL

#15 Sep 5, 2013
just seen dr today said I needed to have surgery I have had many bouts with this diverticulitis on and off cipro and flagyl. can anyone tell me how this scars the inside of colon. im scared bout to be schuelude for surgery

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