colostomy surgery on friday....scared : (

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molly m
New Member


Date Joined Jan 2006
Total Posts : 17
   Posted 12/15/2007 9:25 PM (GMT -7)   
So I finally have my surgery this Friday after 2 years of trying to deal with fistulizing Crohn's, and flares all the time. I'm really thankful in a way, but all I've had is ankle surgery. That's nothing compared to this. What's worse is that I thought it was going to be a laproscopic procedure, but it's not. I was talking to my ostomy nurse and she basically told me that I wouldn't have a belly button anymore and I freaked out. I think the surgeon is going to accomodate my belly button fears and cut around it, but jeez, if I had woken up with no belly button I'd have been really mad! ha. Anyway, I'm probably going to be admitted early because I've been on remicaid, and the main reason I'm having the surgery is because it doesn't last a full cycle. It's not been 7 weeks when I can usually only go 4 without getting sick. I've lasted a lot longer than I thought, but now I can barely keep down gatorade and water. : ( I don't really see any other options but to go to the hospital and have a glucose drip at least. I'll start passing out if I don't. I'm terrified for this surgery. I know it's not supposed to be life threatening or anything, and I really trust me surgeon, but I'm just afraid I'm not strong enough. I really want to make a quick recovery since my surgery is conveniently right before Christmas. I know I don't have much of a chance of being out on Christmas. But somewhere around there would be nice. So yeah, I guess I don't really have much to say, just wanted to vent. I'd appreciate any happy colostomy stories. ha. Thanks everyone.

Molly

princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 12/15/2007 10:30 PM (GMT -7)   
I am sorry, it must be scary. I hope that the surgery goes perfectly and you can have your life back! I will be thinking of you.
Adrienne,27
Diagnosed with Left-sided Ulcerative Colitis 1995 at 15
Tried: Prednisone, Rowasa & Hydrocortisone Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Canasa, Enotcourt, Colazol, Proctocort, Anamantle, etc...
Diagnosed with Ulcerative Proctitis with rectal fistula in 2004, put on Remicade
2007:Increased Remicade dosage-660mg every 6 weeks,diagnosed with Psoriatic Arthritis & Fibromyalgia
Current meds: Remicade 660mgs every 6 wks ( I may be developing antibodies?), Lomotil, Darvocet, Clorazepate, new meds: Prograf, Cymbalta, Lyrica


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted Yesterday 1:04 AM (GMT -7)   
Molly,
It's completely normal to feel scared, but I can assure you that everything is going to be just fine, and you are going to feel so much better once you're rid of that diseased colon. I also had fistulizing Crohn's and avoided surgery for 7 years, but those were also scary years, because I never knew when I was going to be in a horrible flare. sad

I had ileostomy surgery in February 2006 to rest my badly diseased colon, but it flared 8 months later, so I had it removed in October 2006. It was the best decision I've ever made. I knew that the Crohn's was gone the day after surgery, because the pain that I had felt before surgery was gone! I had a different kind of pain from the surgery, but knew that it would go away as I healed.

I have not had to take any medicine since surgery and feel better than I did before I got sick, because now I really appreciate my good health. Before Crohn's, I was completely healthy but took it for granted.

Having an ostomy is so much easier than having Crohn's. Everybody poos... we just do it differently! :-) Just think, you'll never have to run to the bathroom again!

Please ask us any questions that you may have and keep us posted on how you're doing.

My thoughts and prayers are with you,
Cecilia
Dx'd Crohn's in '99 at 28. Proctocolectomy & ileostomy in '06. Remission since surgery.
 
Pain-free, med-free, and very thankful to be healthy again :)


Rightway
Regular Member


Date Joined Sep 2007
Total Posts : 24
   Posted Yesterday 4:30 AM (GMT -7)   
Molly,
I didnt have crohns but did have a serious bowel rupture in August which was very serious and I was very sick.  After much pain, I went through the operation and came out fine, weak, but fine.  The operation isnt that bad.    I am sure after its all over you will be a different person.  I found that living with a colostomy wasnt that bad at all.  Actually it has its advantages.  After you get use to daily routine of getting up and going and cleansing the ostomy its a breeze.  And the rest of the day is no problem at all.  Clothing will be an issue for you, but the ladies in here are wonderful with advise and council.  Be at ease, it will be alright.  Be blessed.  God is good and faithful.  You will be in my prayers for sure during this season of time.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted Yesterday 7:03 PM (GMT -7)   
It will be fine, it's not fun to have surgery but you will feel tons better. I had UC, but what cecilia was saying, about feeling better from the Chrons, i felt the same way, i woke up from the surgery and i felt better from the UC, almost clean. And i also knew, that even though the surgery pain was there, it was going to go away, whereas the UC pain or the chrons pain doesnt' go away! think of it that way, a short bought of non-fun for a life time of fun!
I didnt' have any trouble with my clothes, most of the other women dont' either, so don't worry too much about that.

sfgiantsjo
Regular Member


Date Joined Feb 2007
Total Posts : 420
   Posted Today 10:57 AM (GMT -7)   
Hey there. I was scared before my surgery, too. And I won't lie, recovery has it's moments that's for sure. BUT - after all is said and done, life is better with an ileostomy. Although it will be hard that soon after your surgery, you will eventually feel as if your surgery was the greatest Christmas gift ever. Make sure to let us know how it goes. And, I'm sure you will have a million questions and concerns, and plain old vents. PLEASE come here. We can help. If nothing else, we can help you know that you aren't alone.

Good luck!
UC diagnosed: December, 1999
Asacol: 1600 MG daily
Immuran: 150 MG daily
Prednisone: 4 MG daily (Woo-Hooo! Getting lower and lower!)
Remicade: Infusion every 7 weeks
Probiotics 4 billion CFU Daily
Glutamine 500 mg 2x Daily
 
OFF all meds!! Liver failure, and emergency surgery as soon as liver levels return to normal. ACK!
 
Surgery August 24, 2007. Home now!


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted Today 3:23 PM (GMT -7)   
Hello Molly,
I just wanted to pop in and say that I have had an ileostomy for 23 years due to Crohn's Disease. I too wasn't thrilled about having it initially. I was only 24 and it was permanent for me. It had been so long since I felt human before my surgery that once I finally recovered, I have never looked back. As others before me have said, you will have your moments. But the beauty of having surgery done now is that you have us to talk to!! The internet is a wonderful thing. Didn't have it when I had my surgery and I sure could have used it. Please keep us updated on your surgery and ask any questions you may have -- there are a lot of really nice and very knowledgeable folks here. Best of luck to you and be patient with your recovery.
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


~ChristieAnn67~
Regular Member


Date Joined Dec 2007
Total Posts : 151
   Posted Today 11:50 PM (GMT -7)   
I just wanted to say I wish ya luck, and will say a prayer for ya! 
                                          ~Christie
40 yo RN, happily married, with 2 beautiful daughters, Tianna(14 yo) and Alyssa(10 yo).   Diagnosed L sided Ulcerative Colitis in Jan '04 and Diabetes type 2 in June '05.
                                 Medications
Remicade infusions ~ Nov. 6, 2007,  Dec. 6, 2007,  6-MP 100mg daily, Pentasa 500mg twice a day, prednisone taper 20mg 10mg 5mg daily, Nexium 40mg twice a day, Lantus insulin 45 35 units daily, Novolog 10 8 units with sliding scale at meals, Amaryl 2mg daily, multi-vitamin daily, Calcium daily, B complex vit daily,  and pro-biotics daily.


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 12/18/2007 3:15 PM (GMT -7)   

Molly,

If you are reading these posts, I was just wondering how you are feeling about your upcoming surgery?  Do you have any other concerns or questions that we might be able to help you with before Friday?  Will anyone be able to log into this forum and keep us updated on your surgery and recovery?

Also, I just wanted to let you know that there is a chat session tonight (Tuesday) beginning around 8 p.m. and you are welcome to pop in.  Just click on CHAT located in the dark blue bar above, then choose OSTOMIES and log in.  I hope to be there at some point.  If you are not successful in logging in the first time, be sure to choose the Ostomies chat room from the pull down menu.  Sometimes I forget to do that getting in a hurry and you will get an error message.  Hope to see you there!

 


Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


molly m
New Member


Date Joined Jan 2006
Total Posts : 17
   Posted 12/26/2007 9:36 PM (GMT -7)   
Hi everyone,

So my surgery on Friday was a success. My surgeon proved that he's awesome and I trust him even more now. My ostomy seems perfect. The only thing is that it doesn't stick out very far so I have to wear a convex pouch right now but it doesn't bother me. So the surgery part went great, but I'm still sick. : / My GI was really hesitant about giving me a remicaid infusion because that's the whole reason I needed the surgery, because it wasn't effective enough. But what's happening now is I can't keep anything down, throwing up all the time, and having tons of liquid output which is horrible because I have to empty all the time. What's amazing to me is that even with still being sick with the ostomy, i think I'm still happier. It's so nice not having to worry about not making it to the bathroom or having a pad on all the time. Anyways, my GI decided to give me the remicaid for now then hopefully ween me off. I'm really hoping to be eating and somewhat back to normal by Friday. Thank you so much for your thoughts and prayers, and keep em comin : ) I need to get over this hump to get my real life back.

Molly

Dancerpeg
Regular Member


Date Joined Dec 2007
Total Posts : 43
   Posted 12/27/2007 8:20 PM (GMT -7)   
Molly,
Glad to hear that you are doing okay. I'm new to this site. But my husband lives with a iliostomy for the past 14 years. He's had crohn's for the past 28 years. So never let your guard down of not being check with crohn's my husband right now is going through a battle with crohn's he's getting IV antiboitics and they are talk about but a TNB line in to stop his eating so his fiscula's would heal. He has 2 that leads to his back and they put a tube to drain the other one to a little bulb. He had little problem with his ostomy since he got it. Back in 2001 he also had to have a reconstruction from the right side to the left side and 10 inches of his small removed. As soon as the infections are gone he will be put on remicade.
Get Well Soon...
Peggy

Dancerpeg
Regular Member


Date Joined Dec 2007
Total Posts : 43
   Posted 12/27/2007 8:42 PM (GMT -7)   
Molly,
I messed up on the TPN line instead of TNB.
Peggy

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 12/28/2007 6:42 PM (GMT -7)   
Molly,
I'm so glad that you're through surgery and are doing well. Please keep us updated on your progress and feel free to ask us any questions. I'll continue to keep you lifted up in prayer.
Cecilia


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 12/30/2007 4:03 AM (GMT -7)   
Molly,

I'm finally back on line and was checking in to see how you are doing? Are you home? Has the output slowed some? How are you feeling?

Just wanted to let you know that I am thinking about you and hope you are recovering well.
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 12/30/2007 3:18 PM (GMT -7)   
hello all,
im new too and am not looking forward to an ileostomy sometime next month. I have the same concerns as you did molly and I was wondering how it was going for you. I tell you this site has made things so much easier for me, i can finally say ileostomy without bursting into tears.

the pics of the stomas still frighten me, i thought it would be better to have a stoma that didnt poke out to far, but molly are you saying this is causing a problem for you?
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?!


redheadedmama
Regular Member


Date Joined Jan 2007
Total Posts : 54
   Posted 12/31/2007 5:53 AM (GMT -7)   

Hi Molly!

I just had my colectomy on Dec. 24.  It was very scary and I can totally understand everything you have gone through.  I'm back home recovering now.  Although I know I feel better than I did before going into the surgery - I was super sick with UC for weeks leading up to the surgery - recovery isn't easy.  I think it is because I'm in such a weakened state.  I'm glad to hear you are doing well. 

I'm going to post some of my post-surgery questions in another post.

Just wanted to let you know you weren't alone with surgery over Christmas! 

Kristen

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