Happy New Year! 90-days post Reversal Ileostomy and I Have a Brand New Colostomy!!!

Hi All,

Happy New Year to my Ostomates! I wanted to thank everyone who has been kind and read my week-by-week Reversal Ostomy stories, especially as they worsened. 90 days to the day of my reversal I had a Colostomy put on (Sept. 27 reversal ileostomy, Dec. 27th Colostomy).

Afte spending Thanksgiving and Christmas sleeping on the bathroom floor, and most days in between going to the bathroom 20-30 times a day my boyfriend took me to my surgeon on the 26th of December and within 15 minutes my surgery was scheduled. It was such a relief to know the pain would finally be stopping. Heck, bowel prep wasn't a walk in the park, but after digitally (heheh) removing all the impacted stool, it went quickly and I showed up 4 hours early for surgery (in case they could get me started early!)

A few notes: Colostomies are WAAAAAY better than ileostomy. I don't even know WHY they give out ileostomies (okay, i do know, everyone is an individual and each case needs individual evaluation of the strength of the colon and body) and I received an ileostomy because of a low-colon placed reanastomosis.

But still Colostomies are GENIUS. My colostomy is exactly parallel to my ileostomy scar (which is still too new for surgical revision) with my belly button in the middle. I have learned in the few short days since gettng my colostomy that after a few weeks I can start regular irrigation and stop wearing bags, only wear stoma caps. WHO KNEW!!!!???? It's not as though as ostomy shows anyway,but this is just taking it to another level.

1. I dont have pain or humiliation of rectal/anal pain
2. No more anal incontinence
3. Savingn goo-gobs of money cause I'm not buying pain medication, mood medication, or adult diapers
4. No butt burn or Diaper Rash
5. I can leave the house for the first time in months
6. Bag only when I feel like it...if I feel like it
7. No looking back!!!!!

I rang in the new year by glancing at the clock in my hospital room while changing playlists on my iPod. I rang in my birthday two months ago on the bathroom floor as my grandmother held me over the tub as we tried to irrigate a rectal impaction that left me mute with agony. Two very different realities. I'm so happy to have my ostomy back!

In the words of jazz songstress/songwriter Dianne Reeves "I am free of danger, I am free of fear, and my mind is at ease."

Happy New Year to Everyone!!!!!!!!!!!!!!!

Congrats on your successful surgery!!! Isn't it like night and day for you? I was so happy to read your post and to hear that you are well on your way to recovery. Back to living a real life again, huh?! Just wanted to let you know that I am happy for you,
Regards and Happy New Year 2008!!!!

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Peggy

Hi StomaGrrl,

Congratulations on your successful surgery. I'm new to this forum and this is my first post. I hate to start out asking stupid questions but here goes.

I had a failed j-pouch in 2000 which was eventually replaced with a continient ileostomy (I mow empty thru a tube) in 2002.  I have a lot of struggles with my ileostomy and have been considering other options, including a colostomy. You said that you prefer the colostomy over an ileostomy. Can you tell me why you find it preferrable?

Prior to my takedown surgery for the j-pouch back in 2000, I had an external appliance for about 6 months. I found it hard to deal with. I was curious about your comment about wearing stoma caps and only bagging when needed. I don't recall having this option. Can you provide more info on that?

Thanks and I wish continued success with your health!

 

 

Stomagrl,

Congrats on your new found happiness! it still amazes me how people can be so excited and happy with getting these procedures done lol but i have a question. U mentioned with ur colostomy you dont have to bag unless you want to? how does that work? you control what comes out? or is it one of those things where u catheterize(sp) yourself? Is the stoma bigger or smaller than the one for your ileostomy?

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25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!

Hi Stomagrrl!

Thanks for sharing your good news. I think it brings us all up, collectively. All the best in your continued healing. Ain't life grand?!!!!!

Richard

Stomagrrrl,

I'm so glad that everything went well for you, i'm sending best wishes your way from Scotland, Gillian x

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Ileostomy - Feb 05, Hernia on site.

Stomagrrl,

Thank you for your post. Your words are very inspiring and comforting to those who may be contemplating a colostomy and it is great to hear that you are doing so well with it. I am so sorry that you had such a horrible birthday/Thanksgiving/Christmas. I am grateful that in 2008 you can begin a new year and a new life. Congratuations on your wonderful surgery and your new found recovery.

I hope that April is able to find this same relief eventually. She suffers so much with some of your previous symptoms and now she is trying to hold down a job. I cannot imagine how difficult this must be for her.

Thanks for keeping us posted on your progress.

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Amey

Hi All! Oh gosh, you guys made me cry! Joyful tears, but tears nonetheless because I know no one understands like the people on this forum. a few questions I'll try to answer in reverse order:

Praying & Pouchman: This is one of those things they NEVER told me (the docs) prior to surgery. My ET nurse told me when she came to do my bag change then put me in touch with a life-er (25 years and holding colostomate). With a colostomy, because it is using your large intestine you get more formed stool. Keep tht in mind. With the ileostomy you have more liquid stool, it's like well-chewed food as opposed to soft stool you get with colostomy. Well, I was informed that once my initial healing completes I will be able to use irrigation tool and essentially give my stoma an enema into a bag. The awesome thing is that if done consistently (somewhere between every other and every day at the same time - you establish your routine and your body follows it) then you clean out your colon. There is nothing to come out, leak, or otherwise move into a bag, thus the lack of need for one. Instead you wear a stoma cap (I saw them in the medical supply book and could never figure out what the heck they were for, they look like mini swim caps - how weird?!) but the Stoma cap is tiny - convatec has one that is curved, Hollister's is flat. FYI, I prefer hollister products cause they fit the shape of my body better (flat stomach and Hollister's stick'em bit is square and takes up less space on my abdomen). Since the colon is the last place your food goes before elimination with or without an ostomy, once it is empty, it's empty. Nothing to pass. So my new 25-year ostomate friend and ET nurse AND my surgeon said it's totally regular to only use bags to travel (flying etc.) or when having stomach upset etc. but not on a day-to-day basis. I can get and give more details in the future, my new friend was very forthcoming and we plan to lunch soon. It's funny how they don't tell you the stuff you consider imporant (the stuff dealing with vanity is important as the health relief). TMI alert: I found having sex easy enough with the bag, for my own peace of mind I usually wore the opaqe bags (that took some learning since you can't see if you get your whole stoma in, I found a few times (more often than not) that I didnt. No leakage, just dug into my stoma a little, which I couldn't feel since there aren't any nerve endings. But a stoma cap...whole new vistas of self-confidence bloom in front of me!

Thanks Richard!!!! I've used this group to support myself and educate myself, I'm pleased and surprised to be "giving back" just with my little message. So happy though because this group has been my sanity and I've learned how to be an informed patient who could really talk to her surgeon instead of feeling powerless and as though everything was just happening to me. So, really, thank all of you.

Prayer (again): Colostomy stoma is slightly larger than ileostomy stoma. Two different parts of the body - illie is small intestine and narrower, colostomy is large instestine and wider by maybe a half-centimetere at this (very, very early point). I should note that my ileostomy started out MUCH bigger than my colostomy is starting out. so I don't know what that means. Another thing with the irrigation to live bag-free, it's basically an enema for your upper colon (My Colostomy is upper colon, not lower). I asked if it hurt because I am no fan of enemas and my surgeon laughed and said "not at all." that was confirmed by ET nurse (who is also ostomate) and my new friend. It just prompts the stool to flow out of an inverted cone you've stuck in the stoma opening (which you can't feel) and the stool flows into an attached baggie. Dispose and you're done.

I like the colostomy because it's more permanent, though I know people get permanent ileostomies and I talked to my surgeon about it, and I had no problem with my ileostomy, it came down to what my body would handle the best. Since i've had so many surgeries this summer there was scar tissue to consider. Also the operation was being done laprascopically and they had to be careful of my ureters, which were damaged in an earlier surgery. Finally, because of 45 lb. weight loss before my ileostomy, nutrition was a major factor. My surgeon wanted me to get more from my food, which means it needed to stay in my body longer.

When they "marked" me for the ostomy we chose three possible sites: #1 was my original ileostomy (i was willing to stick with the familiar), but it was on my right side and I sleep on my right side and found that an annnoying transistion and sometimes caused me to wake up at night, adjust my bag and turn on my back. My second site choice was same spot on the other left of my belly button for the colostomy. Much more convenient for sleeping purposes and general movement since I'm right-hand dominant and clumsy. The final spot was lower left for colostomy and I hoped they would not have to use that because it was more in line with the top line of my pubic hair and that was going to be a fashion disaster (I didn't know at that time about irrigating and living without the bags).

Oh yeah, the stoma caps have charcoal tablets in them for gas, too. I forgot to mention that before.

Pouchman, what were your issues with the external placement? I've heard others say they had problems, too and a lot of it seemed centered around placement. I have a friend with a j-pouch (she's amazing, she has lupus, cancer and so much joy she makes you want to go bungy-jumping or something) and she said she wouldn't agree to an ostomy unless they did the j-pouch because psychologically it was too difficult to imagine her body with the external appliance. I could totally understand. I guess I was fortunate in that within 24 hours of getting my Ileostomy, I had an ET nurse come in and she was downright wacky (she had about 1000 pet names for stomas, it was so weird) and so compassionate and she got me more interested in the function of my ostomy than the physical aspect, then when she showed me how small my stoma would get (it ended up a 1/4 inch in diameter) I was much more willing to see wha the benefits were even though I was moritifed beyond belief.

It also helped that when I got my ileostomy I was fitted with a super-pubic catheter due to a neurogenic bladder. It was a 1/2 door long bit of rigid plastic sewn into my pubis. It hurt worse than the ileostomy or anything I'd had before or since. Now I self-catheterize a few times a day and having my ostomy on the left side makes that a lot easier since I'm a righty.

Peggy, it really is night and day. My 90-days without an ostomy left me so weak that my surgeon told my family if he hadn't operated when he did I may have not been able to tolerate the operation and ended up hemorraghing again or worse. I mean, I just had surgery, major surgery, and I'm sooooo happy. the pain is nothing compared to an impacted colon. NOTHING. I am eating chicken and rice soup and crackers, drinkig gatoraide and typing on my computer. Before my surgery i was on my stomach on the cold bathroom floor, drinking tap water and constantly cleaning my bum as acidic stool oozed out.

My percoset is requesting that I take a nap. Please if I promptedmore questions, feel free to ask and I'll do my best to answer. Knowledge is power and in such a major decision, the more knowledge you have the better prepared you are to move foward and LIVE! LIVE! LIVE!

Stomagrrrl ~ I am so happy for you and am celebrating the new, healthy you in 2008!!

Congratulations!

Cecilia

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Dx'd Crohn's in '99 at 28. Proctocolectomy & ileostomy in '06.

Pain-free, med-free, and very thankful to be healthy again :)

Stomagrrl,

Do you have an irrigation kit? I bought one because my surgeon thought that it would help me with my ileostomy but it didn't. I used the kit once. My insurance covered some of the kit which cost $109 from Edgepark. I had to pay 60% because this is not a "required item." Anyway, I was going to sell it on ebay for $50. If you want it, I will give you the option to buy it otherwise, I am going to list it on ebay. If your insurance will cover your irrigation kit, then that would be the best option. Or, maybe your boyfriend can get you a discount from through his work.

Again, I am glad you are doing better. Thanks for your informative post. I learn so much from reading this forum. I always feel like I am taking an online ostomy course when ever I read from this website.

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Amey

i am so glad to hear you are doing better and that you are happy!

Congratulations on feeling better. Though, after having a colstomy for 15 years that was changed to an ileostomy in '04 I have to disagree with you as far as which one is better. I'm sure it varies from person to person, but my colostomy was much noisier and less predictable. But, as I said, I'm sure this varies from person to person.

Vette Guy & Amey,

Yeah, colostomy is louder but i'm pretty good at masking sounds and i take bean-o which i've noticed in the past 24 hourse significantly reduces the amount of gas and noisiness even when i'm having a movement. It was suggested by the ET nurse and seems to work. I'm just jazzed to have an ostomy over the legions of suffering I was experiencng before, they coulda put this sucker on my forehead and i'd probably still be happy cause i'm not in pain. so far it seems to follow a longer processing schedule than my ileostomy (food to bag 6-8 hours dependeing on what i ate), but i recently retroed my diet, adding more liquid meals (every other) since my abdominal area is sore and movements are a little uncomfortable when they are substantive. would love to hear more about your colostomy experience when you have a moment.

Amey, thanks for the offer but i already ordered my kit and my insurance paid 80% as with my other supplies. i made sure to place the order on teh 31st, too, i was manic about that. I appreciate you offering me first dibs though.

it's 9:30, time for my final perambulation and then getting into bed. Did my first colostomy bag change today. Colostomy tissue is darker than ileostomy tissue was. Anyone know why?