Getting a total Colostomy

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Terrell
New Member


Date Joined Apr 2010
Total Posts : 13
   Posted 4/26/2010 4:22 AM (GMT -7)   
cry  Hello Everyone, I just joined HealingWell and I am soo happy that I did, I never knew there was soo many people out there dealing with the same thing I am dealing with. Here is my story, I am a 34 yr old f that has crohn's that was diagnosed since March of '97. I have been having alot of problems just about my whole life. I have had several surgeries and seems to have taken every medicine possible for crohn's. Currently I have a colostomy since July '09, since then I have been hospitalized 4 times for prolapses and etc. I also have a rectovaginal fistula that is causing major problems as well. My doctor and my surgeon just talked with me last week and came up with the conclusion of getting a total colectomy, they said my colon is completely diseased and had to be removed, they also said the colon is what's making me very ill. I was told that I can have my life back but I will just have the colostomy for the rest of my life. I have 3 beautiful healthy children that keeps me going (on the days that I have enough energy). I have to stay strong for my babies but this is very hard for me! I just do not have a clue as to HOW to feel right now? Anyone has any words of encouragement, I desperately need them. Thanks

Becky77
Veteran Member


Date Joined Dec 2005
Total Posts : 1768
   Posted 4/26/2010 6:41 AM (GMT -7)   
Sorry to hear you have to have surgery, but I hope it brings you to a better, more healthy and better feeling place!
Becky

32 yr old female-dx with Crohn's in '97 after emergency resection and appendectomy, 2nd resection '05, Bilateral pulmonary emboli 10/09
Currently on Humira, Omeprazole, Effexor, Seroquel, Calcium, Vit D
Coumadin stopped 3/15/10!!!!


davidblink
Regular Member


Date Joined Apr 2010
Total Posts : 20
   Posted 4/26/2010 7:01 AM (GMT -7)   
All I know is I have a fellow at work that when he had his colon removed and got a J-Bag that his problems went away. He said that other than going to the bathroom about ten time a day he hasn't noticed. He had Ulcerative Colitis.
Dx with Crohn's Feb 2009. But was told that I had probably had it a long time.
Flare-up Mar 20, 2009 sent me to hospital where I perforated and got emergency ileostomy. Took down ileostomy on Jan 5, 2010. First Remicade treatment in a week.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 4/26/2010 7:44 AM (GMT -7)   
We have an ostomy forum here on Healingwell you might want to visit also. They have probably more experience with the colostomy and might be better to answer some of your questions. Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Terrell
New Member


Date Joined Apr 2010
Total Posts : 13
   Posted 4/26/2010 9:38 PM (GMT -7)   
Thanks Alot for the responses! I will mbe sure to check out ostomy as well!

MToronto2
Regular Member


Date Joined Apr 2010
Total Posts : 232
   Posted 4/26/2010 10:19 PM (GMT -7)   
I lived with an illeostomy for 4 years. It was the best I had felt in 15 years of CD (I'm now up to 24). I got mine due to a surgical error, and there are days when I wish I'd never had it reversed... sigh...


Do talk to the ostomates. There are pluses and minuses to j-pouch vs external bag, and since your a mom of wee ones, you might want to start with the external (my baby niece called it my penis, and then started mimicking how I'd wrap TP around my finger to clean it after emptying -- I could never empty alone with her and her brother back then, she was born the year I got it).

The advantages of the external are that you less likely to have inflammation issues, were as the j-pouch can be a new place for the inflammation to show up. You will gain weight, enjoyu food again, you will feel better and it doesn't impede one's sex life at all. I met my, now, husband when I had it.

Wish you the best, please keep in touch :)
CD 24 years. Multiple surgeries in past 10 yrs. 4 year Illeostomy. Mesh rejection. Too close to death, twice. Large inscisional hernia. Perpetually underweight. Short bowel syndrom. Have used a variety of complementary medical therapies. Highly recommend Bowen Therapy as the best body work. Take me vites. Started Low Dose Naltrexone March 27, 2010. Got married for the only time 2008. Survive because of the love of good friends, and because I can. Happy to be alive. IBD needs more awareness and more voices willing to speak up. BE well.


Terrell
New Member


Date Joined Apr 2010
Total Posts : 13
   Posted 4/27/2010 11:34 AM (GMT -7)   
Thanks alot MToronto2! I have been reading alot on this chat and that is a question of mine, what is the difference between j-pouch versus external? I also sent my story to the ostomy chat, no one has replied as of yet. It is still alot of research I need to do but it feels better when you talk with someone who is actually going thru the same thing.

MToronto2
Regular Member


Date Joined Apr 2010
Total Posts : 232
   Posted 4/27/2010 11:42 AM (GMT -7)   
Yes, this internet thingy is awesome. I got diagnosed in 1986 and felt very isolated. I'm also glad to have other benefit from my experiences.

Please stay in touch :)

Oh and the only bugger of the bag? Any shoes to match it will be fuuugly! lol
CD 24 years. Multiple surgeries in past 10 yrs. 4 year Illeostomy. Mesh rejection. Too close to death, twice. Large inscisional hernia. Perpetually underweight. Short bowel syndrom. Have used a variety of complementary medical therapies. Highly recommend Bowen Therapy as the best body work. Take me vites. Started Low Dose Naltrexone March 27, 2010. Got married for the only time 2008. Survive because of the love of good friends, and because I can. Happy to be alive. IBD needs more awareness and more voices willing to speak up. BE well.


sammies
Regular Member


Date Joined Feb 2008
Total Posts : 493
   Posted 4/27/2010 7:52 PM (GMT -7)   
I'm with you and am sending positive vibes. Please do check out the ostomy board here at healing well AND go to UOAA .org which is a fantastic site (United Ostomy Associates of America). From there, you'll find tons of links, boards, discussions.

As for me, I was diagnosed with crohn's 25 years ago. First 23 years--no surgeries and dealt with the disease with meds and lifestyle changes. Suddenly, I was allergic to 6mp and the disease began to attack like it never did before. Then, r-v fistulas became unbearable, I lost almost 40 lbs. Fistulas ran rapid, rectum was perforated, colon completely diseased. Happened so fast. So, I am ostomate--just over a year. My colon, rectum, and anus are gone. Life isn't easy but it's much improved. MUCH.

The support here and at UOAA has been phenomenal. As soon as you can, see a stoma nurse--I'm sure your surgeon will set this up for you. S/he will have lots of resources for you and help you navigate the beginnings of applicances and pouches.

We're in this together. Keep us updated.
24+ years with Crohn's/colitis; fistulizing crohn's; ileostomy and proctocolectomy; TPN, propranolol and xanax; anemia of chronic disease


MToronto2
Regular Member


Date Joined Apr 2010
Total Posts : 232
   Posted 4/27/2010 8:24 PM (GMT -7)   
Check out Shaz's Ostomy Lounge too.
CD 24 years. Multiple surgeries in past 10 yrs. 4 year Illeostomy. Mesh rejection. Too close to death, twice. Large inscisional hernia. Perpetually underweight. Short bowel syndrom. Have used a variety of complementary medical therapies. Highly recommend Bowen Therapy as the best body work. Take me vites. Started Low Dose Naltrexone March 27, 2010. Got married for the only time 2008. Survive because of the love of good friends, and because I can. Happy to be alive. IBD needs more awareness and more voices willing to speak up. BE well.


Terrell
New Member


Date Joined Apr 2010
Total Posts : 13
   Posted 4/28/2010 2:35 AM (GMT -7)   
smilewinkgrin  Thanks alot you guys for that information. I will definitely check out both sites! @MToronto2, lol, I have had my shoes to match my bag one time before and it was fuuuugly, NEVER AGAIN! I have to laugh about it, but it was one of the most embarrassing moments of my life!

Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 4/28/2010 3:01 AM (GMT -7)   
Just wanting to welcome all new members to the forum
it is great to hv a safe place with ppl that do understand
stay with us
huggs
lyn
..Co Moderator for Crohns...Anxiety/Panic......Alzheimers

DX..Crohns,,,A/P...Fibro...Seizures..Neuropathy...Pyoderma Gangrenosum..Deaf

I Refuse To Give Up....Others Are Worse Off Than I Am

Donate to WWW.HealingWell.com
MEDS..Lyrica..Dilatin...Pentasa...Folic acid....Ativan..,Diazapam prn..Trazadone at HS..T 4s PRN

NEVER GIVEN UP NOR IN


Terrell
New Member


Date Joined Apr 2010
Total Posts : 13
   Posted 4/28/2010 3:08 AM (GMT -7)   
Thanks Lyn! I absolutely love it! I am here to stay! ((hugs))
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