Problems adjusting to bowel perforation and taking care of appliance

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Subzeromambo
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Date Joined Sep 2009
Total Posts : 1143
   Posted 5/11/2011 8:13 PM (GMT -6)   
It has been about four weeks since my bowel was perforated and I got to catch a piece of destroyed colon as it came out. I had an emergency total colectomy and a transfusion.
I haven't posted recently because I feel so freaked out and I don't feel like I know what to say yet. Even with Xanax I have at least two panic attacks a day: right before bed time (I am afraid to go to sleep and have to take sleeping pills); and at the time of day I had the surgery even though I know I was unconscious at the time.
When things go wrong with the colectomy appliance I start shaking. It is really hard to clean yourself up and fix the appliance when you cannot stop shaking.
I try to spend time here but everyone seems so cheerful and sounds so competent about their appliance that it makes me feel depressed that I just can't seem to get even the littlest things right like putting on a replacement bag (mine always leaks at the attachment area by the second day no matter who puts it on-a nurse or myself).
Am I the only one who has felt unstable and incompetent after an unplanned total colectomy?

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 5/11/2011 11:23 PM (GMT -6)   
Understandably you are in a real fragile state right now as I would be too. It is tough enough getting used to getting the hang of things when most were prepared for their surgery leading up to an ostomy.

You definitely need some more help and assistance to get you on track and make it easier for you.

Everyone adjusts and adapts in their own way. I think a lot of the positive upbeat posts is a way to help accept and cope with such a life changing event. It's not unusual to have ups and downs and have a rant here and there depending on your mood that day. Most of the postive stuff is because most suffered for so long and the change to finally be out of pain and get a life back (different as it may be) that the ostomy and managing it in the overall picture is a trade off of sorts and a 2nd chance at living life again.

When you are thrust into this with a situation like yours it isn't easy to just accept it. At some point I hope this forum can give you the support, advice and help you need. I'm on my way to bed and will say a special prayer for you tonight.
64 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) and no longer in pain.

Subzeromambo
Veteran Member


Date Joined Sep 2009
Total Posts : 1143
   Posted 5/12/2011 1:35 AM (GMT -6)   
Another UC wife,
Thank you very much for your kind post and prayer. I am sorry if it sounded like I was criticizing all of the positive posts. The positive posts do give me hope. Unfortunately, I am still in a lot of pain. The surgeon said that he isn't surprised because of how destroyed my large intestine was. The surgery took two hours longer than normal because they were trying really hard to clean out all of the toxins and because the intestine was in pieces. Just writing about it makes me feel a little panicky.
I have woken up 5 times in the last two weeks covered in excrement from a leaking seal or a burst bag. I have changed to what seems to be working as a no gas diet and hope that will solve the problem.
I hope you sleep well.
SZm

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 5/12/2011 4:16 AM (GMT -6)   
emergency surgery is always harder, much harder, and the acceptance takes longer compared to ppl who was prepared for it. for me the ileostomy was a blessing, since i've suffered with colonic inertia that took over my life for 17 yrs - i had NO life. things got only worse and worse over time till i reached a point i couldn't go on any more. spending 5-6 hrs in the bathroom every morning (worked only part time in the after noons b/c of it), always in pain and in the last couple yrs before surgery couldn't eat. no meds or treatments helped any. surgery was a huge relief for me, that's why i can appreciate the stoma so much. immediately after surgery i could feel the relief and it made me love the stoma.

i'm so sorry you're having so many problems with the appliance.. which tipe are you using? i wonder why it leaks at the attachment area. i use coloplast sensura 2 piece - it has the locker on the bag. there were couple times when i forgot to lock it and it was a disaster... as for night, i try not to eat too close to bed time and i stay away from all the foods that give me gas, so that makes a huge difference.

you've been through so much and it all came as a surprise to you. it's very understandable you feel the way you do. you need someone to talk to and i think a medical psychologist - a psychologist that treats ppl with illness's, traumatic surgery etc. i went to few treatments my self and it helped me. talk to your dr, maybe he can recommend of someone.

hope things will improve for you soon. you are always welcome here to share anything, ask anything or just vent if you need to.. we're all here for you and understand, and will try to help best we can. much love and blessings your way!!!!
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 5/12/2011 6:22 AM (GMT -6)   
Don't be so hard on yourself, I know I felt very much the same as you do but its been just over 2 years since my surgery now and I am doing great. My surgery was also an emergency and had very little time to get my head around it but the pain and isolation that I was going through due to crohns/colitis was just horrible. I did go and see a psychologist and found it helped me a lot, I am also still on anti depressants and take one day at a time. You have to give yourself time to process it all and every individual is different. Only last night I was in the shower thinking what I would give to just be able to go bagless for a day. Once your stoma size settles you will do great changing your appliance so that you have no leaks. Have you contacted any supply places for some free samples? It may help you find something better suited to you. If you post exactly what you do when you change your appliance Im sure between us all here we will be able to help with your adhesive problems. Anyway you take care of you and if you need to chat about anything at all we are all here and understand exactly how you feel.
((((((((((HUGS))))))))))
Doreen

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 5/12/2011 7:49 AM (GMT -6)   
Absolutely - my poor sister was diagnosed in Sept 2009. Long story but I was not happy with her doctor, his treatment etc but she had faith in him. (In hindsight we all know better now...I begged her to go elsewhere....too late now.)

Two weeks before my husband's scheduled surgery (early Dec 2010) she had emergency surgery and had her colon removed. What a shock to all of us. I was so upset and angry. Plus I couldn't be there to help as she no sooner got out of the hospital and it was time for us to make our trip for my husband's surgery. Fortunately she has a great husband for help and support.

When it is an unexpected emergency situation it is a lot different coming to terms with it, healing from it etc.

We joke about it and her beating my husband...we bounce things off each other....I recently had a "show and tell" at our house with all the different supplies and samples we had to try and help her out as she is having some issues.

Her healing and some complications after the surgery due to her fragile condition, high dose of prednisone up to the surgery made her healing a lot slower than my husband's.

So like the posts above say it is totally different when you are ready physically and emotionally to have your surgery versus a spontaneous situation. Kind of like an elective situation when you have the opportunity to plan and psyche yourself up for it. Even though the end result is the same it is not the same for coping.

Don't apologize for how this is affecting you. Just come here and vent, ask your questions and hopefully in the not too distant future we can help you out. This is a tough thing to deal with even for those who have found a way to accept it.

Having been to hell and back and lived in such pain, anxiety and an often hermit like existence this is such a positive change for my husband so it makes it a lot easier to accept when you weigh the pros and cons.
64 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) and no longer in pain.

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 5/12/2011 10:25 AM (GMT -6)   
     So sorry you are going through this terrible time.  Do you have anyone at home to help you?  Going through this alone is extremely hard.  Even the people on this forum who are positive, I am sure we've all had our down times.  I have issues, even till today and my surgery was 11 months ago.  I still have mucus and wonder how long I will have to deal with it.  I have no pain and God knows I am sooo much better than before surgery, but then, my surgery was planned weeks in advance.  You, having emergency surgery are in a much more delicate state.
     Have you tried the Coloplast Sensura one piece?  Someone mentioned they use the two piece.  I tried, but be darned if I could figure out how to snap the bag on..lol.  The ostomy nurse that used to come to my house couldn't figure it out either.  I really don't think she was a real ostomy nurse. 
      The Hollister bags broke twice on me.  The first time we were at the Comedy Club at the Borgata Casino in AC.  Good thing I ate a lot of wintergreen mints that day...didn't smell at all but when I went to the ladies room I was horrified!  It was all over my undies and thankfully, I had on black pants..ugh...what a mess!  Never had a problem with Coloplast.
     I wish you all the luck and surely will keep you in my prayers.  God bless.

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 5/12/2011 12:30 PM (GMT -6)   
So sorry you've been having such a hard time. I second what everyone says about getting more support. Is there a support group in your area? A United Ostomy group or other place where you can meet some people with ostomies in person? Do your friends/family know what you're going through, and are they helpful?

I am struck by how similar surgeries can be so different emotionally. I know if I had needed emergency surgery in the years before I elected to have surgery that I would have been a mess about it. It's just completely different than saying, "enough" when you've been sick for a long time then planning things as much as you can.

You sound like you might have some ptsd from the surgery. Hope you can find someone trained and competent to help with that. Also, when you're up for it, if you can take a stress reduction program, that can help a lot. I went to one that included meditation, cognitive restructuring, and a bunch of other stuff-- didn't help my symptoms at all, which was disappointing, but it helped me cope a lot better.

I've had some trouble w/leaking and this forum has been really helpful. just post as specifically as you can.

Thinking of you.
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

ENIGMAWRAP
Regular Member


Date Joined Nov 2010
Total Posts : 422
   Posted 5/12/2011 4:58 PM (GMT -6)   
Subzero.....don't be so hard on yourself.....
 
I have had many "firsts" that I read about on here before I had surgery.....and, having a mess in the bathroom while changing was just the latest......one lesson, when you hear the gas starting to gurgle, something is about to come out!  So, be prepared.....it's a challenging change in life, but one that will have many rewards down the road.....
 
Have you tried a bag with a filter yet?  I just put one on yesterday, and don't know how long the filter will last (we'll see after the shower tonight)....but, i've had no gas build-up as of now...that might help you get some sleep....
 
enigma
 

betsaronie
Regular Member


Date Joined Oct 2007
Total Posts : 318
   Posted 5/14/2011 7:30 PM (GMT -6)   
I know exactly how you feel. I had my colon (most of it anyway) removed as an emergency too. I have UC and had been thinking about getting a J-pouch for like a week, when my sigmod colon perforated and i had to have an emergency colostomy placed. (I now have an ileostomy while I heal for my Jpouch) My surgery was 7 hours long which is why not all my colon was removed, they wanted to get me closed up. I also had to have a blood transfusion after surgery, 2 units. I've had 3 blood transfusions previously because of the UC causing severe anemia in me. AND i leaked almost constantly for a month after surgery too. So i really do understand. I cried every day, I'd cry while dealing with a leaking bag and it made it hard to get anything to work, I'm right there with ya. It does sound like the experience was a little more tramuatic for you than it was for me, with the fear of sleeping, and the shaking. I would suggest seeing a therapist. I considered seeing one after my surgery but ended up not needing too. But they can be very helpful. (I saw one for a month after my divorce which was very traumatizing.)

Also I would suggest seeing your ostomy nurse. Get help finding something that will stop leaking. Both now and with my colostomy I wear the Coloplast Sensura flex 2 piece with the adhesive coupling. the adhesive feels much more secure to me than the click bags, especially since I had a hollister click pop off me while I was getting out of bed. Many of us have woken up covered in poo, no fun, but it shouldn't be happening so frequently. If your current stoma nurse can't get a seal that lasts find a new one. Go to different hospitals, see if the one you are working with has co-workers that may have suggestions. In the mean time, make sure you measure every time, you may still be shrinking. To help contain those leaks, try Sureseals. http://alpglobal.com/ they help keep the leaks from getting all over the place. Get samples if you haven't all ready to find a product that will work for you. All the companies offer them. I suggest getting a free catalog from edgepark.com and looking through that to get manufacturers names, then go online or call and ask for samples.

Another thing that may help with burst bags at least, is taking GasX before bed. I get the balloon bag too, and the gas x helps. I have a high output stoma, which makes my seals break down very fast, so i have to change my bag every other day, but that's better than the leaking I was having at first. I take 4-6 immodium a day to keep my output down so I don't get dehydrated. Have you asked if an immodiom regime may help you? If you have high output it may be adding to your leaking problem. As for pain, i had some pain for about 2 months after my first surgery. My second was just 7 weeks ago and I was pain free in just 3 weeks. Being sick makes a big difference. Keep walking, do simply leg strengthening exercises like standing on your toes or maybe sit on a exercise ball. these things will all help you heal faster, hence less pain faster.

I know the shock is hard to deal with. Its ok to be upset, have pity parties from time to time, and its ok to mourn the loss of your organ. a serious and severe surgery like you've had causes emotional upheaval, so talk to family and friends, a therapist, anyone and it will help. Remember the good things in life and try to remember that this is an adjustment period. You will get the hang of your ostomy and your new life, it just takes time. Advocate for yourself to get help with your ostomy. Look for new people if the current ones aren't hacking it. And keep your chin up, you're still alive! God bless!! *hugs*
-diagnosed with UC Dec 2006 at 22
-allergic or intolerant to all 5ASAs, sulfa and 6-mp
-emergency transverse colostomy on 9/13/10 from perforated colon
-J-pouch surgery step 1 of 2 3/21/11

windy city
Veteran Member


Date Joined Dec 2010
Total Posts : 607
   Posted 5/15/2011 12:30 PM (GMT -6)   

Hi again, I'm glad to hear from you!  I can so relate, plz know you are not alone.  My surgery was elective and initially had anastamosis of the ileum-rectum.  I was thrilled that surgery was a success and I didn't need an ileostomy!  But, it was shortlived and disconnected caused a blood clot, blood infection, was in ICU and was told I might not make it.  Coming home alone, couldn't walk, 105lbs (was 140), as you w/open incision wound, ileostomy, I was devistated.  I couldn't sleep, my appliance broke every 4 hours, it was torcher.  But, I pushed to get stronger.  Had to, I have 2 small children that need me and I needed them more than ever.  2 weeks later, I broke down and mourned.  I cried for hours a day, day & night for weeks.  Didn't help that 2 months prior to surgery, my dad died, I was his caregiver, we lived together, and dispite my disease took care of him.  He was hospitalized for 3 months, numerous issues, until his death.  I recall when I was discharged & came home, how unfar it was, when my father was alive he always came home from being hospitalized, he was never alone because of me, but now I was.  What lesson was this?  Why?  Maybe I should've asked for help, Xanax or support group.  To be honest, I was in a support group years ago, family members of addicts.  I felt it was too much of a pitty party, didn't feel uplifted or help me find solutions to move forward.  I attended the meetings after I separated from my husband.  We've been 6 years divorced. 

 4 months post op, I found this website.  I too, would read and cry.  Sometimes I didn't want to go on at all because it was so emotional for me.  But this site had definately helped.  It's 10 months now, I'm much better.  But, I still let it consume me more than I should.  I'm unemployed (lost my job due to my diverticulitis) and have all day while my kids in school to let my mind wonder.  So, I've joined the gym, I go bikeriding now that the weather has changed, and try to get my mind busy. Read books, sit in the library, volunteer at the kids school & at church, something because if I stay home, I think and cry.  Personally, I've let go friends that either weren't there for me in the hospital or when I came home.  Friends I had for years that made excuses and ignored me, I wish them the best but to hell with them.  I'm expecting to return for surgery soon and I'm somewhat OK with it now.  I've taken the time to get me back and lead a good healthy life before feeling weak and struggling again.  Told 1 friend couple of months ago my angst regarding my flashbacks and my going in again.  She flat out said 'you need to f/?/?/?g get over it'.  I hung up on her and that's that.

It will make a world of difference for you emotionally that you don't have this appliance problem.  Everyones advise is right on and get samples from everywhere, try.  It will provide you confidence as you will be able to leave the house and feel normal again.  Again, keep your mind busy, set small goals for yourself, get rid of the negativity, and you will be on a healing path. 

Wishing you all the best!!  Christine


Blueheron
Veteran Member


Date Joined Feb 2010
Total Posts : 720
   Posted 5/15/2011 1:49 PM (GMT -6)   
Subzeromambo, so sorry you are having a hard time. I know posts on here, including mine, sometimes seem very cheerful. I agree with Christine-- we all have down times too. My bad times didn't deal with leaks, but with poor healing of my abdominal incision. People on various forums who had surgery around the same time as me seemed to be doing so much better. They were able to hike a mile already, and I could perhaps go a few blocks. They were all trying samples of different products and I was stuck using the ones from the hospital for fear that anything else would leak into my open incision. Most people were pain-free a month after surgery... I was still dealing with severe incision pain at over three months. I honestly wondered sometimes if I would ever get better, and I spent sooo many nights curled up on the couch bawling my eyes out. I also had a visit with a therapist because of mild depression and very bad anxiety. I couldn't stop thinking about the what-ifs and my mind started to go into a downward spiral of worry.

To get through some of this, I worked to lower my expectations a bit. I was being way too hard on myself when I failed at something. I mean, seriously, how competent can one possibly be initially when having a major bodily function altered so drastically? We should all give big kudos to ourselves for getting through this. It is not easy and there is so much to learn. I remember when I went back to work people asked what I did with all my free time. Did I get caught up on reading... did I get some paintings done? I was thinking, heck no! I learned how to empty and put my ostomy appliance on, cleaned up poo, worried, read countless things about ostomies on the internet, ordered samples, cried a lot, slept, went back to the hospital a few times and worried some more. That pretty much sums up my 8 weeks weeks off of work. Yet sometimes I found that I was angry at myself for not being more productive or for having so much trouble. I should be able to handle this all better, I thought. It was unfair to put this much pressure on myself. Now, at six months post-op I can see this. I couldn't when I was in the middle of it.

I also worked extremely hard to focus on only the present moment. My mind wanted to jump to a million things to worry about, but I tried to concentrate just on the most pressing thing that day. For instance, at around three months I was on a wound vac, and having the dressings changed were excruciating for me. On those days, I would just concentrate on getting through that one thing and let the more minor things slide. Of course, my mind wanted to constantly worry about everything else... would I be able to do my sports again, would I be able to eat this or that, what appliance would I end up with? It is all so overwhelming. I had to constantly remind myself that there would be time in the future to deal with these things. I did not have to figure it all out in a day! Same with changing my appliance, which even at six months I still have issues with because my stoma is so unpredictably active (I had a nightmare of a change a few days ago... took me two hours!) I just make it my goal to get through it and really, really try not to worry about whether or not it will be like this always. I made it through that change on that day and things are good at that moment. It has been a very hard adjustment for me to think this way, because I am a person who tends to have my mind more in the future, but it does help ease anxiety.

So hang in there and vent all you need!
-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 11/8/201
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