To all people with COLOSTOMIES!

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KAP
Regular Member


Date Joined Jun 2006
Total Posts : 78
   Posted 7/30/2008 3:13 PM (GMT -6)   
I am considering having this done but a friend told me that everyone who has a colostomy has to do "irrigation".  Is this true? I thought that was a choice the patient can make. Is there not an option?
 
And what exactly is irrigation, anyway?
Any info would be VERY helpful.

simmadown
Regular Member


Date Joined Jul 2008
Total Posts : 26
   Posted 7/30/2008 5:58 PM (GMT -6)   
Absolutely not!!! Not everyone does irrigation. What an irrigation is is basically giving yourself an enema thru your stoma. I don't irrigate. But someone who wanted to be free of the demands of emptying their bag for a certain period of time would choose to irrigate. Not me. I'm fine with emptying it several times a day or however many times I decide it needs it.

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 7/30/2008 7:22 PM (GMT -6)   
It is a personal choice. By irrigating, you can "regulate" it's activity which means that an ostomy appliance may not be needed, but rather a large bandaid to cover the stoma. Irrigation is only an option for colostomies. It is NOT an option for ileostomies. Though I am not sure about this, I would imagine that successful irrigation would depend on how much colon is left in tact... the longer the colon, the more successful irrigation.
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


justjenjen
Veteran Member


Date Joined Nov 2003
Total Posts : 518
   Posted 7/30/2008 8:35 PM (GMT -6)   
Not all ostomates are able to irrigate. If you have an active stoma you are not a candidate. It just depends on your situation.

KAP
Regular Member


Date Joined Jun 2006
Total Posts : 78
   Posted 7/30/2008 9:36 PM (GMT -6)   
Thanks so much for your replies! I feel so relieved now.

So, can you tell me what your surgeries were like -- like, how long did it take for you to be up and on your feet after the surgery? How long did it take for you to get used to taking care of the bag? Did you have a lot of emotional stress over everything, or was it just nice to be able to feel better? I don't have UC or Crohn's, but "outlet dysfunction" -- in other words, I can't get waste out b/c of spasm in my internal anal sphincter and in the rectosigmoid area. I have tried 2 biofeedback therapists but to no avail. I just don't know what to do now, and my doctors are confusing me so much on what I should do.

Thanks for any input! You guys are wonderful and I'm SO glad I found this forum!!! :-)

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 7/30/2008 9:54 PM (GMT -6)   
wow that sounds like a bad thing to have!  i am glad our posts helped you.
 
The surgery is NOT fun, lol.  But you get drugs, and they will be your friend, lol.  Actually one of the worst things is the gas that you will get,which is a good sign that your insides are workign, but it really hurts!
WHen i woke up from surgery my first thought was, "What did i do?" my second thought was "i am better" and i felt the only way i can describe it is CLEAN.  And my third thought was "OWWW!"  and i got more drugs then, and it was ok, lol.  When you are in the hosptial they put a clear bag on you and the stuff that comes out is this nasty nasty green stuff that smells to high heaven, which makes it hard.  When you get home you can use a diff bag that isnt' clear and the output thickens up and starts to smell better.
I was pretty sick and on pred when i went in, so that makes recovery longer, i was in the hospital for 6 days, was going to go home after 5 but a random fever kept me in another day.
You are on limited activity and a low residue diet for 6 weeks, all that means is no major stuff, dont go dig ditches or anything, lol.  Low residue diet is things that are easy on your stomach, no fresh fruits or veggies, no stringy meats.  After six weeks you can start introducing things slowly.
I did have some emotional stress, the time that was the worst for me was the second day after i came home, i took a shower and when i got out and looked in the mirror i was devasted! i was almost a skeleton, i had huge bruises from IV's all over me, and from the surgery, the bag was there and i was like, OMG i am a monster.  And then i thought, well that's just dumb, i may look kind of rough right now, but i knew that i would look much better as soon as i got myself back to normal.  I ocassionaly get upset about it, i mean, noone's life long dream is to have an ostomy.  But it only lasts a few minutes.
It took me a while to get used to caring for the bag, my husband is a nurse and he changed it for me for the longest time, then one day, i was like i can do this.  And i tried and it took me FOREVER!!!  now i am down to about 8 minutes for a change.  and it takes about two minutes to empty and clean the bag.
I hope that helped, i tend to take the long way around to tell stuff!
 

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 7/31/2008 12:13 AM (GMT -6)   
The one thing that you must remember is that the more ill you are going into any surgery, the longer the recovery time. For me, I have Crohn's Disease and it was really active at the time and I was on a lot of drugs, mostly prednisone and azulfidine (none of the new stuff was around then). I was very malnourished, underweight and looked like death warmed over! It took me quite a while to recover and just gain back some of my strength. I weighed a mere 82 lbs when I came home from the hospital. But once I began eating, I ate all the time. It was sooooo good to not have to associate pain with eating after many years of that.

I returned to work part time at around 8 weeks - my stamina was my biggest issue at the time. But the more that I ate and got out and about, the quicker my recovery.

Changing the bag etc gets to be just another routine. I'm right around 10 minutes and that's with nothing layed out ready to go. I can guarantee you that it won't be 10 minutes in the beginning though!! I was so weak and my poor mother couldn't help me cause it made her nauseous - she had a very weak stomach and just couldn't stand to see me struggle but I changed my bag from Day #1. No help.

Food -- that will be your best trial and error. You will just have to experiment wisely. Take all the advice you get and tuck it away cuz it will definitely come in handy in the future. I sure wish I had this many experienced folks to guide me when I went thru my surgery. Everyone here is just so helpful and caring.

Welcome to HW.com.... ask any and all questions. That is what this board is all about.
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 8/2/2008 4:04 AM (GMT -6)   
Hi Kim!
I know we've talked on the phone and emailed a lot, but I can remember if I've answered any of these questions.

I had my surgery done in two parts. First, I got the ileostomy, and then I had my colon and rectum removed 8 months later. I was up and on my feet within a week after each surgery, but didn't get my full strength back until about the usual 6 weeks after surgery.

I had a wonderful ostomy nurse in the hospital who showed me how to change the wafer and bag several times before I was discharged, so I felt comfortable doing it right away. Once I had my ostomy, I never had any emotional stress about it. It was just nice to feel better! :-)

I'm glad you're still asking questions and thinking it over. Call me anytime you want to chat!

Cecilia
Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again :)


KAP
Regular Member


Date Joined Jun 2006
Total Posts : 78
   Posted 8/4/2008 7:09 PM (GMT -6)   
Thanks so much to all of you for your good, honest information. I'm soooo glad to know I wouldn't have to irrigate.

I'm having a transit marker study next week to see if I've also got some colonic inertia going on, and if so, I'll probably end up having an ileostomy instead of a colostomy. I wish I could have the usual surgery for colonic inertia where they attach the small intestine to the rectum, but with my anal sphincter spasm, that won't work, unfortunately. Regarding the marker study -- I'm really nervous about it b/c I have to go 7 days without laxatives/enemas and I am afraid I'm going to rip open that horribly painful fissure I had a few months ago - have any of you ever had a fissure? That was one of the most SEVERE pains I've ever experienced!! So I'm nervous about it ripping open, but I have to have this test to determine which surgery I might need....

Anyway, I appreciate each of your posts - you're all really encouraging and I am just so happy that this forum exists! You are all such wonderful people. Cecilia, I really enjoyed talking with you on the phone and will call you again sometime soon.

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 8/6/2008 8:45 PM (GMT -6)   
Good luck with your tests, Kim. I look forward to talking again, too!
 
:-)  Cecilia
Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again :)


KAP
Regular Member


Date Joined Jun 2006
Total Posts : 78
   Posted 8/8/2008 4:45 PM (GMT -6)   
Thanks so much, Cecilia. I will let you know how the colon transit test comes out. From that I'll find out if I'm going to have a colostomy or illeostomy. I'm so nervous about all of this.... I have read that anal sphincter spasm can be caused by severe stress, which I'm under for many reasons, and I keep thinking that if my husband and I could get out of my in-laws' house and find a place to live where I'm not allergic (I have severe chemical and other sensitivities) then I know the stress would be much less and I wouldn't have to have a surgery?? But I just don't know how long it's going to take to sell our home and then find one I can actually live in..... Much prayer is needed.

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 8/9/2008 7:55 AM (GMT -6)   

Kim, I will definitely keep you in my prayers for peace and wisdom regarding your health, and pray that your living situation will improve.

Have you ever considered having a temporary ileostomy or colostomy? That's what I did at first, and it was so much easier to accept, since I knew it could be reversed. That way, you would be able to go to the bathroom without any laxatives or enemas, and you would find out how many of your health problems are related to toxicity. 

Take care, Cecilia


KAP
Regular Member


Date Joined Jun 2006
Total Posts : 78
   Posted 8/9/2008 12:20 PM (GMT -6)   
What exactly is the difference between a temporary and permanent ostomy? I remember you saying yours was temporary at first. And I have thought a lot about that, that it would show me how much of my symptoms are due to the toxins. I think this is what the Lord is showing me to do.... thanks so much for your prayers, insight, and encouragement! If I had more energy today I'd call you. Hugs to you, dear friend!

justjenjen
Veteran Member


Date Joined Nov 2003
Total Posts : 518
   Posted 8/9/2008 1:31 PM (GMT -6)   
A temp. is when the intestines are diverted and you have a bag but nothing is removed. All of your parts are there but everything below your stoma is 'resting' since your body isn't using it. I say 'resting' b/c in my experience the disease was still very active having a temp did not help. When your ostomy is permanent everything below your stoma is removed.

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 8/9/2008 7:51 PM (GMT -6)   

Excellent explanation, Jen. The same thing happened to me. I had Crohn's in my large intestine and got a temporary ileostomy hoping the disease would go into remission, but it didn't. So, eight months later, I had my colon removed. We kept the ileostomy in the same place, which made it easy on me.

I'm glad I got to try the ileostomy out before making it permanent, because I found out that, compared to going to the bathroom 20+ times a day with Crohn's, I liked the freedom it gave me. Since I liked the ileostomy, I was able to confidently make the decision to have my colon removed, which is a decision that I have never regretted. Being disease-free and medicine-free has given me an excellent quality of life that I did not have before surgery.



Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again :)


KAP
Regular Member


Date Joined Jun 2006
Total Posts : 78
   Posted 8/17/2008 10:28 PM (GMT -6)   
Jen, thanks for the explanation. Do you know what part of the colon they detach and let "rest"? The descending colon or the sigmoid? I'm curious about that.
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