Really Scared!

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New Member

Date Joined Jan 2007
Total Posts : 11
   Posted 3/8/2007 8:49 PM (GMT -7)   
Hello everyone,
I have never posted to a forum/chatroom before, so I hope I'm posting my message correctly.  If not, I sincerely apologize.
I've been reading your posts since I was told on 01/15/07 that I need to have 90% of my colon removed.  I'm 46 years old and have struggled with chronic constipation since my college years around age 19.  I'm so miserable and I'm bloated all the time, even if I eat a small amount of food. I had to go through so much to finally get diagnosed with a lazy/megacolon that simply does not work properly.  After fighting with my gastro doc for the last 2 years, I saw I wasn't getting anywhere with him, so I went to see a surgeon my sister recommended.  My regular Gastro doc did the ring test and the xrays showed they were still sitting in my colon after 6 days.  However, the regular Gastro doc said that was not abnormal.  He was horrible.  I finally went to a surgeon and he ordered the barium enema and it was discovered that my colon is stretched and looped.  I was so angry that the regular Gastro doc refused to order the barium enema because as he said, I didn't say I was in pain, so he could not justify ordering that particular test.  He did try to push me into a drug study for some new drug similar to Zelnorm.  Mind you, the zelnorm never worked for me, so I have no idea what he was thinking. 
With all that said, I have not scheduled my surgery yet because I am simply scared.  Your posts have helped me quite a bit, but I'm still not ready yet.  I will say that I have gotten really depressed over the past month which is why I finally decided to log in and converse with others who know my plight.  I just ask that you all pray that I will gain the strength needed to go through the surgery because waiting will not make it go away. 
Thanks for taking the time to read my story and I look forward to hearing from you all.  I'm so impressed with how much you all have helped each other and how honest you have been about the good, the bad and the ugly of a colectomy.    

Forum Moderator

Date Joined Feb 2003
Total Posts : 1251
   Posted 3/9/2007 8:43 PM (GMT -7)   
I can't help you with your questions cos my surgery was due to UC - I had the opposite problem, I couldn't STOP going to the loo. However, I know there are others here who have had problems similar to yours who should be able to help you.

Good luck with your decision.
I have had an ileostomy for 31 years now due to UC.
Moderator of the Ostomy Forum
I'm not a complete idiot - some parts of me are missing!

Regular Member

Date Joined Jan 2007
Total Posts : 184
   Posted 3/9/2007 9:41 PM (GMT -7)   
Hi Lisa!

I had my colon removed a little over 2 years ago due to crohn's disease. I will tell you I did cry and was upset about living with an ostomy but then I realize I WAS LIVING! :-) No one know I have an ostomy unless I tell them. It took me 2 months until I was back on my feet. If you are having laproscopic your recovery will be quicker. If you go through with the operation ask if they have an osotmy nurse. Consult with her before and after surgery. Also ask the ostomy nurst about free samples of products so you can see which on works best for you.

Good Luck!

New Member

Date Joined Jan 2007
Total Posts : 11
   Posted 3/9/2007 11:31 PM (GMT -7)   
EricaM - Thank you for responding.  I will definitely ask for the ostomy nurse when I decide to go through with the surgery.  I did find the appropriate forum and truly appreciate that you responded to my post.  I believe I'm getting very close to getting it over with so that I can begin living again.
Shaz032 - Thanks for the information.  I finally figured out how to post to the appropriate forum.  I truly appreciate everything I have read so far.  Thanks again.

vette guy
Veteran Member

Date Joined Nov 2006
Total Posts : 650
   Posted 3/11/2007 12:27 AM (GMT -7)   
Hi Lisa- These forums are great. But, you might want to find out when your local ostomy association is having it's next meeting.  Not only can they answer all your concerns on the spot. But, you may also be surprised when you realize that you will not be able to tell who has an ostomy and who's there with their friends or significant other. You'll realize that their are a lot of really successful and really attractive people out there who have an ostomy. And, fundamentally, aren't those your biggest concerns right now? I know after my surgery it was good to know about which is the best appliance for me, or what can't I eat, etc.  But what I was REALLY SCARED about was  (1) if I can continue with my career and support my family, and (2) will I look normal to others. or (3) will I be able to have normal relations with my wife. Of course the answer to all these questions is "yes" and attending an ostomy meeting will help validate that for you. Lisa, I'm sure if you met us you wouldn't be able to tell we have an ostomy. And, unless you choose to tell others, no one you know will be able to tell you have an ostomy either. You'll be just fine, and your concerns are completely normal. Good luck with the surgery.

Regular Member

Date Joined Jul 2006
Total Posts : 212
   Posted 3/15/2007 4:07 PM (GMT -7)   
Lisa I am 53 and scared about my surgery,too. But I want the rest of my life not having to wear diapers. We can compare notes on our surgeries. I will post when mine is scheduled. Good luck to you.

New Member

Date Joined Mar 2007
Total Posts : 15
   Posted 3/22/2007 2:46 PM (GMT -7)   
HI Lisa, I too have suffered with mega colon my entire life....and am having my ileostomy soon... i went through tons and tons of doctors to finally get one to take me seriously was rough.....I too had the ring test.....and same thing... it is funny though my surgeon treats me like I am the only one in the world who wants an ileostomy for colon inertia or mega colon or chronic constipation......we call mine paralyzed colon..... I think chronic constipation is wayyyyyy tooo of understatement...... I currently use enemas to evacuate each day..... and recently I had a collapsed lung due to too much water in the enema...I was in a takes me 2 hours every morning to get ready....I really hope the surgery will improve my quality of life....I am scared to death of dying or having a heart attach during please pray for me and email me anytime at I would love to hear from you

Veteran Member

Date Joined Sep 2006
Total Posts : 2527
   Posted 3/26/2007 10:18 AM (GMT -7)   
Hi Lisa,

I had an ileostomy back on Feb 19th. I have had Crohn's Disease for 20 years. My CD issues have always been with constipation. Back in 1984 after having the chicken pox I started with the constipation and my parents had to give me enemas. When I initially was diagnosed with CD I was having diarrhea every 20 minutes or so. All of my flares after that were issues with constipation. In 2005 at the begining of August I had my colonoscopy and this did show that I was getting megacolon. Initially when I was admitted into the hospital on Feb 11 2007 I went in since I was having fevers over 102 and I was on prednisone.

On February 11 they discovered that my ileum was perforating. The following night I was brought into surgery where they did an intestine resection and while in there they found a fistula and removed that and also took my appendix out. I was doing well the first few days post op. Then it was the well you need to poo before being disharged. I went very little so the next day they gave me 2 enemas with little poo. What I did notice in the small amount of poo were some sesame seeds. I thought about it and the last time I had something with sesame seeds was a week and a half prior.

The doctor was hoping that I would pass some more stool since while he was in my abdomen he was amazed at the amount of stool in me. Because there was no luck with passing stool I needed more surgery. On February 19 2007 I went back into surgery. The doctor removed a third of my large intestine since it was so enlarged due to the impacted stool and due to the removal of part of the colon I now have a temporary ileostomy. The doctor is planning on reversing the ileostomy in 6 months.

It frightened me at first and I am still getting use to the fact that I poop in a bag. The pathology came back on the large intestine and it was a darn good thing he removed it. He told me the tissue was necrotic and the walls were so thin due to being overly impacted and it was getting ready to burst.
Dx with Crohn's 1987, symptoms as early as 1984.
Temporary iliostomy February 19 2007
Ovarian cysts dx 1994, migraines dx 1996, allergies (including food allergies) , oral allergy syndrome (sligtly different than true food allergies), Astham dx 1984, Gall Bladder removed 1999, Inguenal hernia Sx 1987
Protonix 40 mg, Nuerontin, oxycontin, dilauded, Folic acid 1 mg, Vitamin b12 1000 mcg, vitamin b6 100mg, Diflucan 100mg, vitamin A, Multivitamin, Elavil 100 mg, Zanaflex 4 mg, asmanex, singulair, foltix, probiotics
As needed: Albuterol inhaler, relpax, nebulizer (albuterol ), have an Epi-pen but hope I never have to use one.

New Member

Date Joined Mar 2007
Total Posts : 15
   Posted 4/4/2007 8:39 AM (GMT -7)   
Hi Lisa I am in the same boat as you are and I am going to have my ileostomy next month but I am terrified of dying...please email me at so we can talk more.....

Regular Member

Date Joined Apr 2007
Total Posts : 160
   Posted 4/9/2007 6:47 PM (GMT -7)   
Lisa I have only recently had my colostomy, but I am glad I did. I have COPD Coronary heart disease (5 way bypass,) diabetes, nephritis arthritis and my Cardiac doctor told me I would not survive surgery for the colonoscopy. My GI Doc said I would die soon and painfully without the operation.. A friend told me when all the choices are in the decision is easy. I had an epidural and everything went very well and I can say I am almost used to my new hole in the belly. Not Quite, but almost Best of Luck to you and God Bless. Ralph
When there are no more choices, tha decision is easy!

New Member

Date Joined Oct 2010
Total Posts : 3
   Posted 10/21/2010 2:51 PM (GMT -7)   
Hi Lisa! We must be sisters!

I had a total colectomy in June of 09. They only kept 6 inches of my rectum. There were some complications after the surgery, getting the new plumbing stomache-small-intestine-to rectum working but LISA is is the greatest thing that has ever happened to me. The surgery changed my life. I do have to take a bit of Lactulose every day but it goes right through me. I feel like a new woman.

I send my surgeon a thank you note every two weeks and today, I went up to the 7th floor of St. Thomas hospital (I was in for 12 days) and hugged the heck out of the amazing, doting nurses who cared for me!

All the best,
diamondsmiles AKA Eileen
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