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Mum to Five
New Member


Date Joined Jul 2011
Total Posts : 19
   Posted 7/2/2011 11:30 PM (GMT -6)   
Hi everyone!   I feel really blessed to have found this forum the other day.   I'm a 42 yo mother of 5.   My kids are 15 yrs-16mos.   I was diagnosed with UC and colon cancer in November of '07.   Had the right half of my colon removed that December.   Went through six months of chemo.   2 years later I was diagnosed with colon cancer again!   Yay me!   So, had the rest of the colon removed except the rectum.   Things were going along just fine until March, when they found precancerous cells during my yearly sigmoidoscopy.   So, this summer the rectum must go.   My surgeon thinks I should try for a jpouch, but I am less than thrilled with this option.   I already have some continence issues.   Not a lot, but enough that I don't want to make it worse!   I also am already in the bathroom around 8 times a day.   That's plenty, thank you very much!   I really just want to get in there, take what is making me sick OUT and not have to deal with multiple surgeries and hellish recoveries.   I was in for 11 days last June when I had the colectomy.  I had an ileus and was sicker than I've ever been.   I have prayed about this.  Prayed for God to give me peace about one option or the other.   Because, quite frankly, both options suck.   And I feel peace about a permanent ostomy.   I feel absolutely no peace about a jpouch.  My GI doc talks like  a permanent ostomy is no big deal and that I'll be fine.   My surgeon talks like I'll be dealing with one hernia after another and in and out of the hospital on a regular basis.   Isn't that just as much a possiblity with the jpouch?   Sometimes I  am so confused, I don't know what to think!   But then I think of my kids, and how much I really just want to be done, so I can be at home and be with them.  
Sorry this is sort of rambling!   It's late.  redface   (Is that a yawn?   Well, it looks like one to me, so I'm going with it!  hehehe)  I'm really looking forward to getting to know all of you.   I'm sure I'll be on here a lot begging advice and shoulders to cry on.  
 
J

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 7/3/2011 12:13 AM (GMT -6)   
Hi Mum
 
Going onto a 3rd surgery I'm sure I would be feeling the same way about the ileostomy.  With 5 children at least after this surgery and recuperation you will be done with it would be my feeling. I don't think I would want to be going through another additional surgery or two and all the recuperating time involved since you are so needed as a Mom. 
 
Yeah there is the learning curve but I am guessing you're a tough gal and will handle that with not too much difficulty.  This forum and the people here will certainly be available to help assist you too.
 
Sorry you are at this point having to deal with another surgery.

Serenitee
Regular Member


Date Joined Apr 2011
Total Posts : 463
   Posted 7/3/2011 12:39 AM (GMT -6)   
Mum to 5, I want to first tell you I am so truly sorry for everything you have gone thru. God Bless you and I am sending prayers to you and your family.

Hello, and welcome to this absolutely fantastic site. Thought I would introduce myself as I remember when I found this site months back. I am a mother of 7 kids. I found this site by accident looking for information from Ostomy patients. This was before I had an Ostomy but wanted to get as much info as possible if I needed one. I have had severe bowel problems since being potty-trianed and I am 46 now. Things got severely worse last January, then it took me till April before I could get back into the colon/rectal surgeon. He saw me the beginning of April and then ordered a Defacography and a Colon Transit Study (where you swallow a capsule with several dozen plastic rings in it. Once the capsule dissolves the rings are left in your intestines. The goal is at least 80% of them should come out within 5-days. None of mine came out at all.) Which was not a surprise to me as I had been telling all of my doctors that everything going in my mouth was not coming out of my rectum at all. I was going thru a bottle of Milk of Magnesia Laxative + 8 Dulcolax pills a day + 2 Magnesium Citrate Bottles (which is what you drink to prepare for a colonscopy), all of this every 1-2 days. I gained 60 pounds in 3-months. My intestines had completely shut down and wasn't working. Well after doing the colon transit study and getting the results I was immediately scheduled for a Temp. Loop ileostomy. My surgery was May 10. It was the best thing I ever did and wish they would have done it years ago. In September I will be having the ileostomy changed from temp. to permanent and wish I could do it now.

Anywaz, I didn't mean to blabber on about myself. I can't tell you what this site has done for me. I wanted to invite you to come onto the chat site sometime as I would love to chat with you. You can go on any of the rooms where the people are as we congregate in whatever room anyone happens to be in. So, pleez know you are welcome and f there isn't anyone on the Crohns site or Ostomy site just come to any room. When I had some difficulties with my skin from the wafers it was the people here that helped me thru it. I also suffer from other medical things so this site just has allowed me to make friendz with others that understand what I'm going thru.

Oh, if you click on my name, serenitee, it will take you to my profile. And i have my email address there, would love to receive emails if you wanted. A lot of us here use the emails so our conversations can be private at times.

Welcome Again,
Your Healingwell Friend,
Serenitee

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 7/3/2011 8:20 AM (GMT -6)   
Welcome to the list, as others say, this is an amazing site.

Frankly, I'd be questioning your surgeon's competence. Unless there's a special reason why you in particular would be so hernia-prone, then I don't know why s/he is emphasizing that. Is the surgeon a colo rectal surgeon? At a teaching hospital? From what I've read, 30% of people w/ileos get hernias, so it's certainly a big risk, but it's not like everyone is having one after another. I'm not sure what the risk is from a j pouch, but it's still abdominal surgery, so there is some risk.

But a lot of people with ileos are perfectly fine, glad to be done. There are people on this list who had the option of a j pouch and chose ileos for the reasons you describe. There are others who didn't have the option of a j pouch for a variety of reasons.

I think a second opinion from another surgeon might be a good next step. And ask some detailed questions about the hernia risk -- is that something they say to everyone or just for you? You might also find it helpful to talk to an ostomy nurse -- they deal more w/the practicalities of living with an ostomy .

I too felt a lot of peace when I decided on an ileo. I just said that I am done. That's it. No more of these horrible drugs (might not be an option for you, sigh), no more total fatigue, no more colon/rectum problems.

It's your body, and it's up to you. Good luck.
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 7/3/2011 1:24 PM (GMT -6)   
Welcome, Mum of Five. I'm sorry you've been through so much in the past couple of years.

I had my colon and rectum removed 5 years ago (due to Crohn's) and have had a permanent ileostomy ever since. I've never had a hernia, nor have I heard many people here posting about them, so I would not let that be a worry for you.

I'm able to live my life to the full and eat whatever I want, exercise, travel, swim, work full time, you name it, without any problems or restrictions.

I'm glad you found this site. Everyone here is very caring and helpful. Please feel free to ask any questions you may have (or cry on our shoulders), we're here to help in any way we can! :-)

Blessings,

Cecilia
Dx'd Crohn's in '99 at age 28. Proctocolectomy and permanent ileostomy in '06.
Disease-free and medicine-free since surgery and very thankful to be healthy again.

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 7/3/2011 2:05 PM (GMT -6)   
Welcome!
I thought similarly to you when I had my surgery last year. I had Crohn's Colitis (possibly UC) and didn't want to deal with the possible issues with a jpouch. I felt so much peace and relief when I decided on a permanent ileo. I have had some complications (with obstructions due to my intestines twisting at the stoma site), and subsequent surgeries because of that, but even on the worst day I never regretted my choice. My life has been SO MUCH better because of the surgery, it's not even a question. I am so thankful for my ostomy.

Please feel free to ask as many questions as you'd like! We love to help :)
Stephanie, 29 years old

March 2000-Diagnosed Crohn's Colitis
(Tried every drug imaginable, but lived 10 years with daily diarrhea)
March 18, 2010-Total Proctocolectomy and Permanent Ileostomy! :)
(Now med free, 4 subsequent procedures to correct blockages at stoma site)

Stoma named Zoe...She's my best bud!! :)

Mum to Five
New Member


Date Joined Jul 2011
Total Posts : 19
   Posted 7/4/2011 9:58 AM (GMT -6)   
Thanks for the warm welcomes! And Happy 4th of July!

Blueglass, my local surgeon is a general/vascular surgeon. I trust him. He did my first surgery, a right hemicolectomy. He's very, very good. I think when I talked to him about the ostomy he was being a bit dramatic. His feeling is that I am too young to be stuck with an ostomy for the rest of my life. The specialist who did my surgery last year (a surgical oncologist) was not thrilled with giving me the jpouch. We decided on leaving the rectum since my gastroenterologist said it was unaffected by the UC. I guess the UC decided to move to fresh pastures since the rest of the colon was gone. ;) Anyway, I have confidence in my surgeon's abilities (both surgical and dramatic! LOL)

Personally, I'm not that worried about hernias. And I've been reading about the use of mesh around the stoma site to strengthen it and prevent hernias in the first place. I'm going to talk to him about this.

Serenitee, thanks for the offer to email me privately! I may take you up on that some day! :) Your story makes me wonder about my own weight gain. I've put on 25# in the past few months for no apparent reason. Surgery is not my preferred weight loss method, but hey, whatever it takes. ;)

I hope everyone has a fabulous 4th!
J

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 7/4/2011 10:20 AM (GMT -6)   
I'm glad you trust your surgeon. It sounds like maybe he doesn't do too many of these operations on younger people. Since IBD is often diagnosed in the teens and twenties, it's very common for people younger than us to have ostomy bags, often permanently (a lot of them and their moms are on this list). My surgeon is a colorectal surgeon, and it's clear that she's done many of these surgeries on younger people, then she works w/the ostomy nurse for follow up visits, and sees people thriving.

You are not at all young for UC, but you are young for colon cancer. That's a lot.

My surgeon pushed me on the j pouch option too, even though at the time they were pretty sure I had Crohn's and I would have had to go to another hospital far away (Cleveland clinic) for the follow up surgeries, as Mass General won't do j pouches on people w/crohn's. I think they just don't want you to come back with regrets.

I have a very slow healing butt wound, which is still draining and bleeding after 4 months.... I do have moments where I wish I didn't have this wound.... but I'm fine w/having the bag, and even w/the wound, I am doing so many things that I haven't been able to do for years (I went to a music festival over the weekend..... was way too tired for that sort of thing in that past.... chairs were hard, but I managed w/my pillow).

Enjoy the day!
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

Mum to Five
New Member


Date Joined Jul 2011
Total Posts : 19
   Posted 7/4/2011 10:37 AM (GMT -6)   
No, I don't think he does do these surgeries on  young people much.   I'm always the youngest person in the waiting room.   Which is a switch from my OB/GYN where I'm always the oldest.   smilewinkgrin    But I have noticed the number of younger people on this board and others, and while it IS sad that there are so many, it makes me feel confident in my choice.  Oh, and I too, would have to travel for the jpouch surgeries.   I'd be doing it in Baltimore, which is about 90 minutes from me.   And that's with no traffic.   Ha.   That's where I was last summer for the colectomy, and it was hard on my family.   I didn't see my children for almost 2 weeks.   Then a couple days after being released by drain stopped putting anything out.   So, I was transported back for an overnight stay.   Not a huge deal in the grand scheme of things, but very discouraging at the time.
Ooh, I hadn't thought much about the butt wound.   OUCH!   I hope that improves for you, and soon!  
 
J

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 7/4/2011 2:59 PM (GMT -6)   
I can see how it would have been discouraging being away from your kids so much, especially with the youngest only 16 months.

You will want to talk to your surgeon in advance about taking or leaving the anus. I was pretty shocked when I found out that removing the anus and sewing up the hole was part of the deal -- idea is that you can get cancer there too and that it still puts out mucous -- but some surgeons leave it in. People on this list have had different experiences.

I mostly went w/what my doctors wanted to do.... it was a fast turn around time for me. I'd been in the hospital for 10 days w/a high fever (up to 104.6), while on immune suppressing drugs, and the docs pretty much said I was out of drug options (except clinical trials, no thanks, after that scare), and I saw a surgeon a few days after I got out of the hospital, then booked in two weeks.

I feel so much better now! The wound is frustrating, but not very big in the scheme of things....
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

Blueheron
Veteran Member


Date Joined Feb 2010
Total Posts : 720
   Posted 7/5/2011 8:44 PM (GMT -6)   
Welcome Mumtofive. I am 39 and chose a permanent ileostomy. I am so glad that my surgeon didn't pressure me on surgery type. He basically gave me the facts and pros and cons of each option and was willing to do whatever I wanted, since I was a candidate for both. My GI doctor was really pushing me to go the j-Pouch route, but I wasn't interested in it. My surgeon even told me some stories of other patients who were fairly young and chose the permanent option and their reasoning, which seemed similar to mine. Mainly, I wanted a surgery outcome that was fairly predictable. I have a huge passion for everything outdoors, and I just didn't want to have to deal with any possible unpredictability issues (such as frequency) with a j-pouch while, say, up on a long rock climb all day. I know many people's J-pouches are predictable and problem-free... but some are not. I did not want to take the chance. I just wanted to get rid of my UC, learn to live with an appliance and move on with living my life to the fullest.

I have absolutely no regrets about my decision. My ileostomy is really predictable. I hiked two huge mountains on a 3 day backpacking trip over the long weekend, and everything went smoothly. On the 9 hour ascent and descent, I only had to empty my pouch once. The next day on the other ascent/descent, I made it 6 hours before I had to empty it. It has been everything I had hoped for and my life just feels so normal right now. I have had no issues with leaking and only a few minor skin issues that were easily resolved. Once I got through the learning curve, wearing an ostomy pouch is no big deal for me and has changed very little about my life other than the way that I deal with my waste. I had some issues with healing up from surgery (abdominal incision related), but once I got through that, things have ended up wonderfully. I did have my anus and rectum removed and stitched up. I am very glad my surgeon did it this way because I have had no problems and don't have to worry about mucous discharge.

I worry about hernias, but I just try my best to be smart about things. I wear a hernia prevention belt during anything even remotely strenuous, and plan to watch my weight, as being heavy increased the odds of getting one. I am also easing back into my outdoor hobbies really slowly and being cautious with lifting heavy things.

Good luck with your decision. Maybe you can get a second opinion, but overall, I would say follow your heart on this one. I would guess that when people get the surgery type they had hoped for, whether a permanent ileostomy or a j-pouch, they are more satisfied and less regretful. You are more able to face problems head-on when you are invested in and at peace with the choice that you made.
-39 years old
-Officially diagnosed with UC in 2006, though had symptoms since 1999.
-Had mild/moderate symptoms continuously until severe flare in autumn 2010 which required 2-week hospital stay
-Took Asacol, Rowasa, Canasa and Prednisone to manage flares but meds stopped working
-Tried 1 dose of Remicade but had excruciating joint pain and discontinued
-Had permanent ileostomy surgery 11/8/2010

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 7/5/2011 9:15 PM (GMT -6)   
at 29 i chose a perm ileo, because i wanted to be done, and over with the whole thing! i didn't want anymore surgeries or to miss anymore time with my son, i had already missed the first two years of his life with UC.
If you feel more comfortable wtih a perm ileo then that's what you should do!
good luck!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

Ymotso
New Member


Date Joined Jul 2011
Total Posts : 17
   Posted 7/6/2011 8:51 PM (GMT -6)   
I suffered a quick onset of UC in 2008 and battled it for two years. I have since had a an Ileostomy and rectal removal (abdominoperineal resection) and don't regret one moment of the slight discomfort I suffered in recovery. Eating what I want doing what I want and got my life back. Hope the same for you.
60 year old male, Two years into a perm. ileostomy
Started suffering from colitis at 56 and dealt with it for for 2 years before deciding on surgical procedure.
Life is great again
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