Total Colectomy and Reconnecting

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Sally Louise
New Member


Date Joined Jun 2005
Total Posts : 7
   Posted 6/19/2005 11:51 PM (GMT -6)   
Hey Guys..
 
I am 21 and I just had a total colectomy about 4 weeks ago.  I actually had serious complications.  I wasn't ever suppossed to have an illeostmy but due to stitches not holding, here I am with a bag for about 8-12 weeks.  What I don't understand is when they reconnect me am I going to be just fine.. I have heard people say they have a lot of diarrea and stuff, but do any of you know if there is ever a chance down the road I would have to have a reversal and be stuck with this bag again.... or for the rest of my life... I am only 21 and that scares me more than anything...
 
I seriously hate it!!! I can't wear half my clothes because it shows.  It ALWAYS leaks because my stoma is SUPER flat and flush with my skin... I am just sooo depressed and hating life right now because I am stuck with this.. if anyone has a word of advice or some up-lifting experiances I would love to hear it!!!
 
Sally

gardespatient
Regular Member


Date Joined Mar 2004
Total Posts : 33
   Posted 6/20/2005 9:30 PM (GMT -6)   

Sally,

Your absolutely right, there are very few things in life that compare with the awfullness of an ileostomy. I too woke up after an obstruction surgery with a temp ileo.  Then, 5 months later had it taken down, and never got well after.  about 2 months ago I had another ileo put back into place, and this time they tell me it's permanent...like hell it is!!!! I have been searching out the perfect Doc to take this thing down, and have recently had some luck.  I totally appreciate your honesty about your ileo, because I 100% hate mine too.  People that say it's the best thing they ever did, or even name their bag, are totally out of my league. Even though they say it saved my life, I'm not sure it's been worth all the emotional torture I live with verses the physical illness.  At least when your "sick" people feel for you, but when you can't handle the mental part of all this, people don't understand, or comments like "hey, at least your alive" are made.  I'm so sick of my bag blowing off when I eat anything solid, I haven't been able to actually eat a meal, or any of the foods I enjoy for about 7 months. Before the ileo, I was so sick, and with the ileo, well whatever it's suppose to do it doesn't, which makes digesting foods really really hard. Baby food, yogurt, applesauce...thats about what my diet consist of.  So Sally, you have every right to HATE your bag, I'm so happy that yours is temporary.  Just keep focusing on that magical day they will take it down, the surgery itself is not too bad, and if your body does what it's suppose to do, (unlike mine) you should be back to "normal in about 5-6 weeks.  You may have some "D", but depending how quickly your small bowel adapts to not having the colon will depend on how bad the "D" is and how long it will last.  My colon was so bad for so long, that my small bowel adapted before I ever even had the colectomy done.  Try paste around the stoma, and eakin seals work fairly well too.  Pester the ostomy nurses till you find something that works for you, thats what they are there for. At first I never called them or the Doc with any problems, I always thought they would think I was just a complainer. But now, the way I see it is I didn't create this hell by myself, and I'm not going to live in it alone! So now if there is a problem, I call till I get an answer that works for me. As for your clothes...I know how bad that sucks, especially with the low waisted jeans, shorts, capri's. And do you totally hate how you can't wear any tight tank tops, or how about your bathing suit...UGH!!!!!!!!  At least some of the tanks sold today are really loose around the tummy, so that works, but your right, it does totally suck!!! How many more weeks before you get the reversal?  I'll help you count down the days, at least one of us has a redemption day planned!!!!  Just remember, it's temporary, it'll help you get through some of the rough days. I know I sound really bitter, and I actually am, but I WILL pray Gods best for you, and that time flies by till you get the take down surgery!  Remember, take care of YOU, physically, and emotionally, and if you ever want to vent or discuss how frustrating this awful thing called an ileostomy is...I'm here for ya!!!!

Tammy


Tammy


Sally Louise
New Member


Date Joined Jun 2005
Total Posts : 7
   Posted 6/21/2005 4:52 PM (GMT -6)   
Tammy,
 
Oh my gosh... thankyou so much for responding.  I would really like to talk to you more about everything!!! My email address is sallyhardman@gmail.com I would love it you could send me your email so we could talk more!! My aol screen name is Roxy83Surfer girl, if you would rather talk on instant messenger...
 
I can't even tell you how great it was to hear your response.  I am soo sorry about all you have been through, I am also here if you need someone to vent to or share your frustrations with.. I think this forum is the best thing I could have ever found, I felt like I was the only person in the world having these problems until now.  The date's I have scheduled are July 6th is my scope to see how everything is healing and then if they say everything looks okay my reversal date is scheduled for July 25th... I am really pissed about that because to me it seems ridiculous to have to have this bag for the three weeks when it isn't even nessasary... I mean, if they tell me on the 6th I am okay to have the surgery.. I want to have the surgery... RIGHT THEN!!! I hate this thing!! gah!! You will definatly have to count down the days with me and update me on how you are feeling!!! I will be praying for you... Please send me an email so we can chat more!!!
 
Take Care!
Sally

lucky dude
New Member


Date Joined Jul 2005
Total Posts : 4
   Posted 7/12/2005 7:01 PM (GMT -6)   
Hi,i am a temp ileostomia as well,and after i found out it would be temp i was happy,and i am counting days till the surgery.i have UC and they left me about 15 cm to use again,and i am afraid that it won´t do,but i am trying to be positive :) day at time
 
 
I was taking 10  X 5 mg tablets of prednisolon per day during flareups,now i have a temporary ileostomia untill end of august,after that i will have prednisolon after the surgery
 
Today is the last day of my life :) my life motto so enjoy


MackiJack327
New Member


Date Joined Oct 2012
Total Posts : 1
   Posted 10/30/2012 12:43 PM (GMT -6)   
Sally,

I know this is five years later, but I am in the same boat. I am 25 years old and had my total colectomy 2 weeks ago. I am so glad that I am not the only one that does not like this thing hanging from my body. I am not sure why it is that you or anyone else for that matter, had their surgery. I was diagnosed with FAP - which is a mutation in the genetic genes of an individual that causes cancer within the colon. So it was either the total colectomy or cancer down the road. I can not say how much I want this thing off. I feel so nasty all the time, I just want to shower (which is impossible to do alone at this time!). I, too, will be going through the second surgery in January. I am doing much better than Tammy is (although Tammy I honestly am behind you 100%, depending on where you are located I could recommend quite a few doctors that are in Louisville, KY) and am able to eat kinda normally.

I am still in the "try this" phase and hate the feeling of waiting around to find out how a certain food effects me. My biggest complaint - lettuce. Oh how I loved lettuce. Apparently that is a big NO NO once you colon is gone. The small things they didn't tell you before you get it done (although I did not have a choice because my colon was progressing and could have been cancerous in a few months). Slowly realizing that Taco Bell is not something that I can really enjoy anymore (the tomato skins can cause a blockage, the lettace is restricted, and beans cause gas that can cause my bag to rupture - YUCK!).

As of tomorrow I have 10 weeks until the second surgery. I am curious how your reconnection went and how long it took to get back to 'normal' or as normal as can be expected. I have heard some people can go to the bathroom up to 30 times a day (which sounds exhausting) and others say they go between 1 and 6 times (which sounds like a blessing). I hope everything went well!!!

Ashley

pswift520
Regular Member


Date Joined Sep 2010
Total Posts : 91
   Posted 10/30/2012 9:16 PM (GMT -6)   
Ashley,  You mention Louisville, KY.  That is where I had my colostomy done. Who is your Dr.  Mine was Dr. Rodriguez,  I really like him.  I had really been thru alot when I was finally sent to him and he gave me a temp colostomy.  I am scheduled to see him and have a colonoscopy done this next Wednesday then we will talk about my reversal.  I went thru alot before I got this so I am not looking forward to going thru surgery again, but hope that I don't have any problems with it.

Subzeromambo
Veteran Member


Date Joined Sep 2009
Total Posts : 1143
   Posted 10/30/2012 9:49 PM (GMT -6)   
Is your "reconnection" a j-pouch?
Diagnosed 1987 with lower left ulcerative colitis. Hospitalized often. Mega toxic pan colitis Dec. 1999. Perforated colon and total colectomy April 2011. First j-pouch surgery March 8, 2012. Six other damaged organs removed at that time. Ileostomy reversal June 26, 2012.

bootstrap
Veteran Member


Date Joined Nov 2009
Total Posts : 583
   Posted 11/1/2012 1:10 AM (GMT -6)   
Wow, a lot of negative feelings on this thread. There is nothing wrong with that of course, as this is a place to vent frustrations, share concerns, and ask questions. I would, however, like to bring just a little balance to the conversation.

It's true that no one "likes" being put in this position... If you ask anyone here whether they would prefer a healthy, functioning colon, you know what their answer would be. However, from the sounds of it, you all lived pretty healthy, physically comfortable lives up until your sudden emergency surgeries. That means you most likely have no idea the kind of pain, suffering, and torture many of us who had diseased colons went through for YEARS before we came to the decision to have a colectomy. And none of us came to that decision lightly - I'm sure all of us resisted the idea at first if not straight up refused it - but eventually our quality of life dropped so low that even life with an ostomy sounded bearable in comparison, and most of us at least had time to process and come to terms with it... Which is what I have found so far to be one other key component in how much people like or dislike their ostomies.

No, I do not like this bag on my side one bit, and the thought of living like this forever is pretty scary. But it is way less scary than the thought of living another year with my disease. I can't wait for my takedown. And I am pretty nervous about the types of issues I will deal with as I adjust to life with a J-pouch. But what overpowers all this by far is my zest for life, my excited anticipation for all the things I can and will be able to do now that I couldn't before, my glee over all the foods I can eat NOW that I couldn't when I was diseased, and the incredibility of a future free from all the drugs and side-effects that I had to pit up with for so long. That's why we name our stomas - because for many of us they gave us back our lives. That and to add a little humor to the mix in order to lighten up a very serious situation.

Every day I have a choice of whether to look at my ostomy (or any of the many other troublesome obstacles I have faced and will face) and think, "Wow, life sucks and this is awful," which would cause me to be miserable all day, or "Look at all the things in my life I have to feel grateful for," which causes me to appreciate and enjoy what I have. It took many years of serious clinical depression to realize that it really is that simple sometimes.
Follow my story: ronnielee-fightingforit.blogspot.com

32-year-old single female (teacher)
10/4/12 - proctocolectomy / J-Pouch construction / loop ileostomy
Take-down scheduled December 11th

Dx mild/moderate UC 1995
Dx severe pancolitis 2011

Marsky
Veteran Member


Date Joined Jul 2007
Total Posts : 1956
   Posted 11/1/2012 6:34 AM (GMT -6)   
At age 43, I had the lower 1/3 of my colon removed due to cancer. One minute I was scheduled to have a simple 1 hour procedure, to "scoop out" a 1 inch malignant tumor (barely inside) and the next (after a revealing ultrasound), I was suddenly scheduled to have a 5 hour procedure, along with a 7 day hospital stay, given a temporary colostomy, etc.

I went from one simple procedure to a major one. And losing the bottom 1/3 of your colon is pretty devastating. You can lose 1/3 of it, higher up but the lower part is VERY important for normal bowel control.

I have not had one single normal day in 13 years after my colostomy was reversed. Initially I had 12 to 15 bm's per day, 3 during one meal, the sheer second I ate, I had to run to the bathroom. It was awful. I eventually went on a low residue diet and kept a food diary. This actually gave me formed stool but I still went multiple times. Why? My sigmoid is gone (the lowest part, where the stool collects through out your day). I now experience about 20 bm's per day. As long as I continue to eat. Not eating is the ONLY WAY I can effectively reduce the # of times I run to the bathroom.

In hindsight, I wish I had been given a permanent colostomy.

My life revolves around a bathroom. And without a bag to collect stool, it HAS to come out, I can only hold it for oh 20 - 30 minutes. Sometimes I go thru dumping episodes, repeated trips to the bathroom over an hour or two. When I am done, I am then depleted of all stool (very similar to taking a bowel prep, when in fact I hadn't taken one).

I've accepted my situation - as is - I do not want more surgery. We have inadequate insurance now (who doesn't, maybe Bill Gates and oh that fellow running for prez, the Mormon).

But I am here to say having a colostomy gives you more control. If that is hard to believe, just imagine rushing to bathrooms all day long, for the rest of your life? I know being 21 and having a colostomy is such a shock, but I am throwing this out there - an ostomy is NOT the end of the world. It's actually very freeing.

In our house, I have worn out so many toilets - all 3 have completely new working parts, about every 6 months. This has been going on now for 13 years as I stated.

I know where every single bathroom is located, no matter where I go. I scope these locations out before I can ever relax.

Good luck to you, no matter what you decide. If your life becomes too much - after reconnect - you can always ask for an ostomy. I wish I could. I do often joke, if our family wins the lotto, I am going to the Mayo Clinic and getting a colostomy!

Post Edited (Marsky) : 11/1/2012 6:37:23 AM (GMT-6)


Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 11/1/2012 2:25 PM (GMT -6)   
Do you need a CONVEX wafer to help it adhere better and give you better results perhaps?

Not sure what kind of "reconnecting" you are referring to. The fact it is temporary you still need to care for it as though it is a permanent situation to give you the optimum results and have the least amount of skin problems and quality of life in the interim. Just find some clothing that will help camoflauge in the meantime if your normal clothes are too fitted so you are the most comfortable. Sacrifice style for comfort for a little while.

Nobody "likes" or wants to have a permanent ileostomy but for most it is what has saved their life and actually given them their life back too.

In Dec it is 2 years for my husband. He is lucky in that he healed well and so far has had no complications. Granted he is an "old man" compared to you and I can imagine as a much younger person it is more difficult overall in many ways.

However you are in the right place for advice to help you through this. In addition to this thread you started there is a wealth of information contained here in various threads that will also be a very helpful resource to you as well.

Best of luck.
Wife of 65 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) & now pain free

bostwis1
Regular Member


Date Joined Jun 2010
Total Posts : 271
   Posted 11/1/2012 1:04 PM (GMT -6)   
I am 22 and I've had my stoma for 11 months now. I have nothing negative to say about it. It was annoying the first few months, because it would constantly blow up with gas. Now I rarely have gas. I wear an ostomy secrets wrap over it, so I can still wear all the tight clothes I used to wear. I even wore a bikini this summer. Nobody knows I have a bag unless I tell them. You will only have yours for a short time, but things do get better with time. The only time I think about my bag is when I am emptying it.
Sara
22 year-old nursing student
Diagnosed with left side UC June 2010
Current meds: NONE
Step 1 J-pouch: 12/19/11
Hernia repair: 1/5/12
Stomach perforation surgery: 1/21/12
No colon, no problems!

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5915
   Posted 11/1/2012 5:50 PM (GMT -6)   
     I don't know how I would feel having a permanent ileo at a young age.  I was 63 yrs old at the time of my operation and suffered with UP (mine was proctitis) for twelve years before deciding to have the operation.  My GI doctor was totally against it since my colon was not diseased at all but my rectum was a mess.  6MP, Remicade and Humira all failed and I had become prednisone dependent for two years prior to my operation.  I was at the point where if the disease didn't kill me, the prednisone sure would have done so.
     At my first visit to the surgeon he told me bluntly I was not a candidate for j-pouch due to all my other health issues.  When I told him I had no problem with the idea of having a "bag" for the rest of my life, he looked amazed.  I suppose not many people accept this idea.  With that settled, he immediately set up a time for my surgery.
     Sure it isn't a pretty sight but I have such a wonderful quality of life now.  Before surgery, I was confined to the house most days and had port a pots stationed in different rooms of my home because I could not make it to the bathroom.  I can eat anything I please as long as I chew my food thoroughly.  The surgery was not a walk in the park.  I had a few minor complications and it tooK several months for me to recover fully. 
     Would I do it over again?   IN A HEARTBEAT!!!

Ouchie2
Regular Member


Date Joined Jul 2006
Total Posts : 330
   Posted 11/2/2012 5:31 AM (GMT -6)   
I too absolutely hated the idea of having an ileostomy. It felt like the end of the world option...well one surgery turned into 3 and a month in hospital. It was the hardest time ever and found out the night of my surgery by mistake when a nurse told me my ileostomy was permanent, and that I didn't have enough bowel to reconnect (j-pouch). I felt just awful. But for some odd reason, I coped and its been 3 months and I'm coping well. I never believed in a million years I'd cope so well. I still have difficult patches, but I have another chance at life. I dont want to preach just wish you all the very best ..
42 female
UC - Diagnosed 2006-Pancolitis UC 2011
HLA-B27 Gene
Iritis 2008
Asacol, 6MP
Vedolizimab stopped (reaction)
8 Mar 2010,Severe flare, hospitalised - 1st Remicade infusion
5 Aug 2010 - Flaring again - 4th remicade infusion 6 August 2010
23 Mar 2011 Allopurinol added
Flaring again - loads more polyps - Remi again Oct 2011
1st surgery July 2012

rstocum
New Member


Date Joined Oct 2012
Total Posts : 16
   Posted 11/7/2012 10:57 AM (GMT -6)   
My surgeon acted surprised when I told him that I would never accept a permanent ostomy, and that if he would not personally guarantee that it would be temporary I would forgo the surgery, stop eating, and allow myself to die. I was losing weight fast at that point, and ready to give up. It would have been easy to go that way.

When he asked what was so terrible about a permanent ostomy I told him: Dehumanizing, degrading, no more dating or sex, ever. TSA agents humiliating you in the airport, baggy clothes from now on, and the generally humiliating knowledge that you don't poop like a human being being anymore, but into a bag that you have to wear - forever.

He acted like he didn't understand my point of view. He questioned how it was possible for me to see things that way. He was actually recommending a permanent ostomy to me. He had three nurses in the office that day, and after my consultation they each told me that they totally understood my point of view, and the surgeon was lying to me, because he always recommended permanent ostomy, and almost always got a negative reaction - especially from younger women.

I don't care at all that you get more control. I would rather snuff it.
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