Chances of surgery ?

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Chronicallyill
Regular Member


Date Joined Apr 2008
Total Posts : 195
   Posted 12/16/2008 3:29 PM (GMT -7)   
Just wondering, I have never had any surgeries yet but a previous post by spiceman got me thinking about if I will ever end up having surgery? Kind of freaks me out. I'm scared of that. One of my old doctors wanted me to have an ostomy bag 4 years ago when I was 19 to give my bowel a rest, but what I have learned so far from docs is that they can't be trusted. They lie to get you to do stuff that "THEY" think is the best which actually isn't. I refused the procegure and to this day would refuse it. I just really don't want to have surgery.
 
What do you guys think are the chances of me having surgery?
Age:22/6"1'/146lb - Diagnosed: 2001 @ age 15 now 22
First time mom as of March 8th 2008
Past drugs: Pentasa, Flagyl, Budesonide, Prednisone, tons of Antibiotics, Didrocal, 6mp
Past herbal remedies and vitamins:Probiotics, Omega 3&6, Prenatal vitamins, B12, Calcium, iron, vit C, vit D, vit E, Selenium, mineral drops
Current drugs: Valtrex, Methotrexate as of October 2008
Problems:Fissure and Tags on rectum, blood clots, Chronic UTI's, Osteopenia, Ulcers in my decending Colon
No surgeries....yet. Gone through 5 G.I.'s found a 6th G.I. crossing my fingers
Procedures: 4 colonoscopies, 1 upper endoscopy, 2 barium swallows, 1 biopsy of the fissure and tag (chron's affected)


spiceman
Regular Member


Date Joined Aug 2008
Total Posts : 51
   Posted 12/16/2008 4:16 PM (GMT -7)   

Hi there Chronicallyill.

Well going on with what I've been told by my GI is that 80% of people with Crohns need an operation at some point of there lives. You might be one of the lucky ones that go without. I've gone without surgery for many years which was great, being young I done everything my friends have done. I've always participated in sport and even ran a few marathons so having Crohns hasn't really affected me like some until now... My mum has Crohns too and she has never needed surgery.. So look on the bright side and it might not even happen to you.

And I know what you mean about freaking out having a bag... Me too. I was shaking the other day when I asked my surgeon about that. He honestly looked at me if I was mad...  And said No!! Only if things were to go seriously wrong..

Oh and by the way... When I had my first colonoscopy done at the age of 18 they suggested I have surgery done because of my stricture, at the time I was feeling fine so I ignored them, I'm now 36.

Unfortunately I feel the time has now come.. So Im going ahead with it as you know.

How do you feel now? my GI said having Crohns as long as I have and going without surgery is only a good thing, He hopes that it will remain that way after my operation. Good luck

 


Chronicallyill
Regular Member


Date Joined Apr 2008
Total Posts : 195
   Posted 12/16/2008 8:41 PM (GMT -7)   

Hey spiceman. Well my crohns to me is horrible, but talking to most of the people on here, not to sound rude, but I am doing pretty darn good i guess. I have a lot of diarhea all the time.When I get really sick I get lots of pain. Most of the time I block the pain. As my mom says I don't take my illness serious enough and sometimes let things go way to far. My doc also says i handle things way to well. I shrug a lot of it off. Looking at it now its kind of like I block it out. It's kind of a down fall because I forget the pain and keep on making my body suffer with the foods i LOVE to eat lol.

There was a point in highschool, my grade 12, that I got so sick my mom wanted to put me in the hospital. She was so scared for me because I went down to 120 lbs at 6"1'. I didnt thinking anything of my weight. For a couple months straight I would go to school ready to puke. Sometimes I would spend time over the toilet getting rid of the acid in my stomach, just by sitting, opening my mouth to let it water out, and would feel better right away. Other times I would puke and feel better also. At the time it was a lot of pain which caused the nausea. I was cr*pping myself silly to. I didn't miss a single day of school that whole time. I hated making up the work. My mom still shakes her head at me.

I havent had a flare that bad since, but I live in a flare every day. :(


Age:22/6"1'/146lb - Diagnosed: 2001 @ age 15 now 22
First time mom as of March 8th 2008
Past drugs: Pentasa, Flagyl, Budesonide, Prednisone, tons of Antibiotics, Didrocal, 6mp
Past herbal remedies and vitamins:Probiotics, Omega 3&6, Prenatal vitamins, B12, Calcium, iron, vit C, vit D, vit E, Selenium, mineral drops
Current drugs: Valtrex, Methotrexate as of October 2008
Problems:Fissure and Tags on rectum, blood clots, Chronic UTI's, Osteopenia, Ulcers in my decending Colon
No surgeries....yet. Gone through 5 G.I.'s found a 6th G.I. crossing my fingers
Procedures: 4 colonoscopies, 1 upper endoscopy, 2 barium swallows, 1 biopsy of the fissure and tag (chron's affected)


Celey
Veteran Member


Date Joined May 2007
Total Posts : 1284
   Posted 12/16/2008 8:52 PM (GMT -7)   
I thought I read on CCFA.org that the chances were 75%... still... not good odds... //@.@\\'....

I've already had one surgery... (Not on my intestines, though... Had this mass on my right ovary... that needed removed... and then they had to remove my right ovary and the phillopian tube...)
I think I am being picked on by life, sometimes. But's that okay. Life and I are good buddies... I know life doesn't mean no harm. It just is the way it is. I can accept that.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 12/17/2008 7:58 AM (GMT -7)   
Well Chronically ill I have had this dd for over 33 years.  I was diagnosed in 1975 and had my first surgery (emergency surgery) in 2002.  So I made it 27 years before I had to have surgery.  But then I had to have another in 2005.  One thing I will tell you, is if you want to avoid surgery you need to take care of yourself now.  I enjoyed a nearly 20 year remission without any meds, didn't watch my diet, and it ended with an emergency resection.  Why?  Because while I was busy getting on with my life trying to ignore the fact I had a chronic uncurable disease, the disease was in there still doing its damage.  So if you want to avoid surgery, you need to modify your diet and always take some type of maintainence med.  If not, you can be sure there will be a surgery in your future.  Good luck!

Been living with Crohn's Disease for 33 years.  Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium.  Resections in 2002 and 2005.  Also diagnosed with Fibromyalgia and Osteoarthritis. Currently my Crohns is in remission.


Chronicallyill
Regular Member


Date Joined Apr 2008
Total Posts : 195
   Posted 12/17/2008 11:53 AM (GMT -7)   
Thanks Nanners for the eye opener. I have definitely been ignoring my condition since i have been diagnosed. To think of it the way you explained about still doing its damage is a wake up call. My bf would be like "told ya so" because he wants me to get better. I do as well, but its easier to turn a blind eye.

Sorry Celey that you had to go through that. I think the only way I will let them do surgery is if I am passed out and have no other choice. :) lol. I would have to say I am in total denial.
Age:22/6"1'/146lb - Diagnosed: 2001 @ age 15 now 22
First time mom as of March 8th 2008
Past drugs: Pentasa, Flagyl, Budesonide, Prednisone, tons of Antibiotics, Didrocal, 6mp
Past herbal remedies and vitamins:Probiotics, Omega 3&6, Prenatal vitamins, B12, Calcium, iron, vit C, vit D, vit E, Selenium, mineral drops
Current drugs: Valtrex, Methotrexate as of October 2008
Problems:Fissure and Tags on rectum, blood clots, Chronic UTI's, Osteopenia, Ulcers in my decending Colon
No surgeries....yet. Gone through 5 G.I.'s found a 6th G.I. crossing my fingers
Procedures: 4 colonoscopies, 1 upper endoscopy, 2 barium swallows, 1 biopsy of the fissure and tag (chron's affected)


spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 12/17/2008 1:23 PM (GMT -7)   
I've had crohn's since I was 19, and am now 33. The only surgery I've had is gallbladder removal. When I moved and had to get a new GI, he said, "You've had crohn's 10 years? You should have surgery." He hadn't even looked at my records or examined me yet! I've had it recommended a few times since then too, but refused. I've been doing really well since being on Humira, so hopefully I won't have to have surgery for a long time.

Chronicallyill
Regular Member


Date Joined Apr 2008
Total Posts : 195
   Posted 12/18/2008 10:32 PM (GMT -7)   
The same thing happened to me spooky. Doctors just decided out of nowhere that I needed it. I just told them, "I'm not on my death bed and until I am there and have exhausted all my resources, then maybe I will think about surgery" I haven't seen those doctors since. I refuse.
Age:22/6"1'/146lb - Diagnosed: 2001 @ age 15 now 22
First time mom as of March 8th 2008
Past drugs: Pentasa, Flagyl, Budesonide, Prednisone, tons of Antibiotics, Didrocal, 6mp
Past herbal remedies and vitamins:Probiotics, Omega 3&6, Prenatal vitamins, B12, Calcium, iron, vit C, vit D, vit E, Selenium, mineral drops
Current drugs: Valtrex, Methotrexate as of October 2008
Problems:Fissure and Tags on rectum, blood clots, Chronic UTI's, Osteopenia, Ulcers in my decending Colon
No surgeries....yet. Gone through 5 G.I.'s found a 6th G.I. crossing my fingers
Procedures: 4 colonoscopies, 1 upper endoscopy, 2 barium swallows, 1 biopsy of the fissure and tag (chron's affected)


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 12/18/2008 10:36 PM (GMT -7)   
I think most of us will probably have to have surgery at least once. I have a doctor in the family, and, even though I have trust issues with doctors sometimes, trust her when she says she's seen great improvement for many people who have decided to go ahead with surgery.

Also, it sounds like you've overdone it there a few times...slow down!! You're making us look bad...hah...;)
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 30 mg, pentasa 2 pills 4x a day, bentyl as needed, prilosec in the morning, tandem plus, humira every other week, and good probiotics.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Attempting the specific carbohydrate diet. Cheated once for Christmas.

"He who has a why to live for can bear with almost any how."


Chronicallyill
Regular Member


Date Joined Apr 2008
Total Posts : 195
   Posted 12/18/2008 10:39 PM (GMT -7)   
LOL ya I tend to over do it a lot. In every aspect of my life it seems like. I wish I could slow down and take it easy I am just a bundle of nerves. At the moment I am contemplating asking the doc for some anxiety meds. Its something I battle everyday.

Age:22/6"1'/146lb - Diagnosed: 2001 @ age 15 now 22
First time mom as of March 8th 2008
Past drugs: Pentasa, Flagyl, Budesonide, Prednisone, tons of Antibiotics, Didrocal, 6mp
Past herbal remedies and vitamins:Probiotics, Omega 3&6, Prenatal vitamins, B12, Calcium, iron, vit C, vit D, vit E, Selenium, mineral drops
Current drugs: Valtrex, Methotrexate as of October 2008
Problems:Fissure and Tags on rectum, blood clots, Chronic UTI's, Osteopenia, Ulcers in my decending Colon
No surgeries....yet. Gone through 5 G.I.'s found a 6th G.I. crossing my fingers
Procedures: 4 colonoscopies, 1 upper endoscopy, 2 barium swallows, 1 biopsy of the fissure and tag (chron's affected)


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 12/18/2008 11:26 PM (GMT -7)   
I can sympathize with you definitely!! Sometimes I wonder if some medication to calm down the nerves wouldn't be pretty nice...and helpful..chamomile and sleep can only do so much.
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 30 mg, pentasa 2 pills 4x a day, bentyl as needed, prilosec in the morning, tandem plus, humira every other week, and good probiotics.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Attempting the specific carbohydrate diet. Cheated once for Christmas.

"He who has a why to live for can bear with almost any how."


Stef17
Veteran Member


Date Joined Feb 2003
Total Posts : 1811
   Posted 12/19/2008 1:07 PM (GMT -7)   
I read this (and I don't have the source - sorry!) - that 75% of people with crohn's will "require" surgery at some point in their lives. Of those 75% that have surgery, 80% will have to have a 2nd surgery and of those with 2 surgeries, 90% of them will require a 3rd or subsequent surgery. I was diagnosed 19 years ago and knock on wood and thank the Lord - I have not had ANY surgeries for crohn's. Seems to me, based on the statistics, that once they cut you, they'll end up cutting you again and again. I know it is necessary for some and a blessing that it's an option, but don't ever let anyone talk you into it if you're not really sure. Get a 2nd or even 3rd opinion. There are LOTS of things to try before surgery. Unless you have an emergency.

Chronicallyill
Regular Member


Date Joined Apr 2008
Total Posts : 195
   Posted 12/19/2008 2:17 PM (GMT -7)   
Those don't sound like very good odds :( i guess i will just have to smarten up now knowing the facts.

Age:22/6"1'/146lb - Diagnosed: 2001 @ age 15 now 22
First time mom as of March 8th 2008
Past drugs: Pentasa, Flagyl, Budesonide, Prednisone, tons of Antibiotics, Didrocal, 6mp
Past herbal remedies and vitamins:Probiotics, Omega 3&6, Prenatal vitamins, B12, Calcium, iron, vit C, vit D, vit E, Selenium, mineral drops
Current drugs: Valtrex, Methotrexate as of October 2008
Problems:Fissure and Tags on rectum, blood clots, Chronic UTI's, Osteopenia, Ulcers in my decending Colon
No surgeries....yet. Gone through 5 G.I.'s found a 6th G.I. crossing my fingers
Procedures: 4 colonoscopies, 1 upper endoscopy, 2 barium swallows, 1 biopsy of the fissure and tag (chron's affected)


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 12/19/2008 2:40 PM (GMT -7)   
Chronicallyill I had a GI tell me when I was young (diagnosed at 18 now 51) that if I did not take care of myself then, by the time I was 25 I could possibly wind up with a bag. I didn't, and ended up having a 20 year remission. But as I stated before, I just tried to ignore my Crohns, took no maintainence meds, and it ended abruptly with the emergency resection. Very traumatic experience for me. Since then I am now faithful to take my medications, and stick very closely to my Low Res Diet. And life has improved alot. Now is the time to be good to yourself, so do it before its too late. Good luck!!!
Been living with Crohn's Disease for 33 years.  Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium.  Resections in 2002 and 2005.  Also diagnosed with Fibromyalgia and Osteoarthritis. Currently my Crohns is in remission.


DancrAlwaz
Regular Member


Date Joined Dec 2008
Total Posts : 38
   Posted 12/19/2008 9:43 PM (GMT -7)   
Hi ChronicallyIll,

I'm 24, diagnosed at 21 with CD. Like you, I'm absolutely terrified of surgery. I have a c-scope on Jan 9th, and I'm so afraid that I've done some sort of irreparable damage and I'm going to end up with a bag. I've also tried to ignore my disease, and it's caught up to me. I'm in my 2nd major flare, and it's taking forever to clear up. That's one reason I'm so afraid that I've done something horrible to myself - I feel like I should be on the mend by now even though I've only been on Prednisone for 8 days.

Here's to hoping both of us (and everyone else!) goes a VERY long time without the mention of surgery.
Rachael - 24 years old, diagnosed with CD in Dec. of 2004.

Currently on 40 mg of Prednisone, Lialda, and Azathioprine.

I thank God every day for an amazing support network of family, my boyfriend who has been there since the beginning, and my amazing friends who never waver.


Chronicallyill
Regular Member


Date Joined Apr 2008
Total Posts : 195
   Posted 12/20/2008 12:28 PM (GMT -7)   
Hello Rachael.  I definitely hear you. Sorry that your on prednisone though. Be careful on that drug. When I was on it my doctors didnt explain anything about it. I ended up on it for 2 yrs. Another doctor told me that you shouldnt take pred no longer than a 6 week period at a time.  Now I have irreversible damage to my bones. Osteopenia. With my experience on pred hasnt been good. Every time I was prescribed it, it would work right away and as soon as I tapered I was 2 steps farther back then when I started.
 
I don't want to scare you Rachael, its just my personal experience. I have been in a constant flare and havent taken good care of myself since I was diagnosed 8 years. To this day I worry about having surgery. Since talking to people on this forum I have realsized how bad I have been and the extent of what could happen if I don't change what I am doing.
 
I wouldn't worry too much about your scope next month. The more you worry the more you will flare. The only thing we can do is change what we are doing to ourselves at the moment to see a difference.
 
Funny Nanners, I never had a doctor truly care about my health enough to say something like that to me, about the bag. Doctors have always just tried to perscribe and do tests and tell me to make more appointments to see them. Your experience is an eye opener to our chrons issues and what can happen and I am glad to be able to talk to everyone on here.
 
 
Age:22/6"1'/146lb - Diagnosed: 2001 @ age 15 now 22
First time mom as of March 8th 2008
Past drugs: Pentasa, Flagyl, Budesonide, Prednisone, tons of Antibiotics, Didrocal, 6mp
Past herbal remedies and vitamins:Probiotics, Omega 3&6, Prenatal vitamins, B12, Calcium, iron, vit C, vit D, vit E, Selenium, mineral drops
Current drugs: Valtrex, Methotrexate as of October 2008
Problems:Fissure and Tags on rectum, blood clots, Chronic UTI's, Osteopenia, Ulcers in my decending Colon
No surgeries....yet. Gone through 5 G.I.'s found a 6th G.I. crossing my fingers
Procedures: 4 colonoscopies, 1 upper endoscopy, 2 barium swallows, 1 biopsy of the fissure and tag (chron's affected)

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