stressed after hospital stay and colonostomy

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kimlin08
Regular Member


Date Joined Feb 2009
Total Posts : 46
   Posted 2/22/2009 5:09 PM (GMT -6)   
Hi Im Maggie and 42 years old...On january 7 i went in for a simple removal of a cyst on my ovary....during this procedure my dr nicked my colon....Went to the er that nite sent home with gas..The pain increased and talked to her office the next day and once more gas....Went on Monday 5 days later to her office in bad paina nd a stomach the size of a large ostrich egg and was sent home with gas....Three hours later in the er crying and sweating and thinking i was dying....One cat scan later and my gas turning in to an emergency surgery where the poison seeped into my bady for the 5 days....The next morning i awoke to a bag on my side and and 17 inch incesion in my stomach....three drains adn a ng tube in my nose...19 days int eh er and 6 in a room...ten days with home health and now 2 weeks at home with husband and family and im angry and sad and depressed and cry alot....I sound like a huge baby, i lived and im very blessed to thankful...In August i have the reversal and i dread being put to sleep after what has happened....please tell me how to handle this.....i have a great support system of family and friends but they dont know how I feel....They talk me up then i fall down hard in 2 days......The dr that done my first surgery came into my roon for 12 days and i finally told them i cant deal with her guilt i had to deal with my healing.....Now i just dont know how to heal emeotionally....Maggie from Tennessee....coping or trying

tbraz
Regular Member


Date Joined Jul 2007
Total Posts : 280
   Posted 2/22/2009 5:27 PM (GMT -6)   
Hi Maggie,

I am so sorry for what you have gone through and it's completely normal for the mixed feelings that you're having. The shock of waking up with an ostomy is hard to deal with to say the least. You have every right to feel angry, depressed, resentful etc, but I'm going to tell you that you are going to be ok. You are going to live and you are going to get past this and look back one day and realize how strong of a person you are!

I would try and think of how others had it much worse than I did, I didn't get a death sentence I just lost my colon! It's not something anyone can tell just by looking at me! I got a new lease on life and can really appreciate what I have. I thought of all the younger people who have gone through the pain of UC/Crohn's and never got a chance to live a carefree life like I did. I am also 42 and was diagnosed with Crohn's when I was 24 and married and I already had 2 children. I didn't have to deal with all these issues as a child or teenager and never thought about bathroom visits or accidents or hospital stays or umteen pills a day, or ostomy bags.

You will get through this and you've come to the right place if you need support! I hope you find peace and can heal quickly!

Take Care
Theresa

Originally diagnosed with CD in 1991
Now saying "Undetermined Colitis"
3 step Jpoucher as of 4-15-08


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5692
   Posted 2/22/2009 5:39 PM (GMT -6)   

You might consider talking to your doctor about PTSD, post traumatic stress disorder.  After what you have been through it wouldn't surprise me that you would be anxious and depressed.  There are some wonderful treatments for PTSD.

Sue


dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


psygirl6
Regular Member


Date Joined Aug 2008
Total Posts : 268
   Posted 2/22/2009 9:19 PM (GMT -6)   
Hi Maggie,
Welcome to the board. I am so very sorry about what happened to you. I feel, and I don't know if you would agree, but I would think or look into suing that doctor for pain and suffering, especailly that you ended up with another surgery to remove the colon and all of the problems you have developed. I know I would be mad,too. I also agree with Sue about seeing someone. I just want to say you have come to the right place for support. We are all hear to help. I hope you are doing much better. Good luck and I hope you feel better.
Maya

Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 2/22/2009 9:20 PM (GMT -6)   
I'm so sorry you have to deal with this.
It must've been very scary to go to have a small procedure done, and then to have to deal with totally unexpected.
My surgery was planned and I had a hard time at first.
It's a difficult thing to go through.
Liket Tbraz said, You will get through it. You will get used to it. Things will be ok.
I'm guessing the surgeon doing your reversal surgery is not the one who caused all this.
You can be comforted knowing a different person will be doing the next surgery.
I also do what Tbraz does, I think of all the people (children especially-poor babies) who have it worse than I do. That puts my self-pity in check!
BUT it's normal to have ups and downs. Don't beat yourself up too much for your downs. You just have to remember to move on.
Once you do get past you reversal, things will be normal (or almost normal).
Good Luck with everything.
Come back to vent anytime! wink
Chassity
28 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery due to abscess-had to redo ileostomy and switch to left side 12/25/08; 1/15/09 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
pred. taper, coumadin, carafate, prenatal vit., and pain meds
(ileostomy temporary....not so sure?)

"Things turn out the best for those who make the best of the way things turn out."


RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 2/22/2009 9:32 PM (GMT -6)   
I could only imagine having the shock of waking up with an ileostomy without any kind of knowledge or preparation ahead of time. I am so so so sorry you are going through this.

A site I checked into prior to my surgery, as I was still debating the j-pouch, was j-pouch.org I'm sure you will find others that have had emergency situations and most of them have already had the takedown surgery. I'm glad you've joined this site as well, as I have gained invaluable guidance and support during my battle with UC and then ultimately my proctocolectomy.

I wish you the best of luck and do know that you are not alone. We have all had our hearts broken and we understand your shock and disappointment. Though each of our situations are different we all have the similarity of having an extreme change in our lives that has affected our bodies and self-image. It easy to slip into a pity party. I allow mine to last ten minutes and just once a day when I do start one. I honestly do not have them often, as I know my situation could be much worse. I am alive...I am now UC free...and I am so appreciative to have my family and friends. It sounds like you have a lot to be thankful for as well. : )

You are in my thoughts!
: )  Robin
 
28 year old Mommy of an amazing 1 year old and Wife for 2 years!
Dx-May 2007 Moderate/Severe Pancolitis - failed all medications
 
Proctocolectomy w/ permanent ileostomy on 02/06/09!!!
 
"Your mind is like a parachute, it only works when it is open."  -Unknown


pepperann27
Regular Member


Date Joined Dec 2008
Total Posts : 147
   Posted 2/23/2009 11:11 PM (GMT -6)   
I wouldn't sue because its not like your Dr did it on purpose, you know? Unfortuatley bad things sometimes happen.
But thats just my opinion
thanks, Dusti

Diagnosed with colonic inertia at 13 years old, had my colon removed.
Diagnosed with rectal inertia at 16 years old, had my rectum removed and had a jpouch made.
Diagnosed with small bowel inertia at 18 years old, and got an ileostomy wich I still have. I am 27 now.
If you want to know more, just ask me!
"Don't worry about failure, worry about the chances you miss when you don't even try"
 


2 RIS K
Regular Member


Date Joined Aug 2008
Total Posts : 367
   Posted 2/24/2009 4:48 PM (GMT -6)   
Maggie welcome to this site, I'm so glad you found us!! You will find a wealth of support and information here.

I wanted to write to you because I had a similar situation, however, I had some warning of what could happen to me, unlike you.
I went in for a total colectomy on September 22 and was told it was a success when I came out of surgery. Everything was fine and I felt great for the first two days. Then I started feeling worse, having more pain, and basically going downhill. I finally had a CT scan four days after that at 11:30 at night. They found that I had a one inch tear six inches above where they hooked me back together and all the fluid had been leaking into me for four days. After a five hour surgery I woke up with a bag, 6 drains and an ng tube. I knew going in that the bag was a possibility, but it was still a shock. I spent 6 weeks in the hospital. I had a hard time adjusting emotionally to the bag and to my self image with the bag and I became very depressed. Luckily the bag was only temporary. I went in for the reversal on December 15 and although it was successful I had more complications and spent more time in the hospital. I've been out of the hospital for about six weeks now and I no longer have the bag but I am still having a hard time with depression, self image (scars), etc.

Just like you I have a great support system and I can feel good for a couple of days and then I too crash. You may have read my thread titled "I can't take it anymore". I too feel like no one understands. I don't pretend to understand your situation completely because you had absolutely no idea what might happen to you. That sort of shock is unimagineable and for that I am sorry and totally feel for you. I wish there had been some way you had been forewarned, but to go in for a small surgery and come out like that would be distressing to anyone. You have a right to feel the way you do and you should probably expect to take some time to get over it or get used to it. Even though I knew what could happen I still had such a hard time.

What you are feeling is normal and it will get better. Keep checking in here and ask us questions or just tell us how you are feeling. We can at least understand somewhat what you are going through, everything except the total shock anyway. We will be here for you. The women on this site have pulled me out of the dumps more times than I can count and the great thing is you can log in day or night and someone is always here.

Maggie, just hang in there and know that you are cared about.

{{{{{HUGS}}}}}
Amanda
35 years old
Chronic Lifetime Constipation
Diagnosed IBS - 1995
Rectal Prolapse - February 2007
Rectosigmoid Colectomy w/low anterior Anastomosis - March 13, 2007
Diagnosed with Colonic Inertia - June 08
Total Colectomy - September 22, 2008
Temporary Ileostomy due to small bowell perforation Septepmber 29, 2008
Ileostomy Reversal - December 15, 2008
Multiple Small Bowel Abscesses-December 22, 2008
Leak at original Anastamosis -December 25, 2008
JP Drain removed - January 23, 2009
 
The whole world is at your feet; so paint your toenails Red!
 


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 2/24/2009 6:44 PM (GMT -6)   
kimlin08, welcome to the site, you really have found a great place to vent and get answers...I don't have much to add, you have already received some wonderful advice/comments.  Definately talk to someone...your hospital should be able to point you in the direction of a support group, whether it is an ostomy support (you could also go to UOAA.org) or another group...just talking face to face with others who may have similar experiences might help.
 
please keep us posted on your progress!

Marsky
Veteran Member


Date Joined Jul 2007
Total Posts : 1956
   Posted 2/25/2009 6:24 AM (GMT -6)   
Hi Maggie - your post really tugged at my heart when I read it last night. You've been on my mind ever since.

First off, take a deep breath. You will get used to having a temporary colostomy. Focus on that one word - temporary. It will be reversed. I had a temporary colostomy too, almost 10 years ago, almost at your exact age, I was 43. I had two young children to care for - 8 and 11. I was a stay at home mom at the time and my daughters and I had a full schedule. We used to go many places - story times at the library, our local parks, a closeby nature center, the mall, etc. All of that came to a grinding halt when I had my first colon surgery. I was in the worst pain of my life - definitely far worse than child birth (I had thought nothing could top labor!). If you read my bio/sig below you'll see I had rectal cancer. I only had 24 hours notice I would possibly wake up with a temporary colostomy. Prior to this I was told my cancer surgery would be very simple - rectal dilation and "scooping" out the tumor, my surgeon's word. But a rectal ultrasound revealed my tumor was possibly thru the third layer of the 5 bowel wall layers so I ended up with major surgery. Large incision, the ostomy, etc. Not quite what you've been thru - you poor dear, just want to pat your hand and say you will get thru this - but a very, very painful recovery. I went to sleep each night with one prayer - please let the pain be gone by morning. But each morning for 4 solid weeks, it was there when I got out of bed each day. I'd just grin and bear it somehow, all I could take was Tylenol! I had kids in my care! I took each day as it came but one trick I did use (that I used in labor and delivery) - I projected forward. In my mind, I would have these continuous pep-talks. "Mary, in one week, you will feel better, in one month much better, in 2 months, this ostomy will be reversed.....". Words to that effect. This mind trick did take the focus off what was going on at that very moment. So you could try that approach. I still use it, to this day!

Second, you mentioned caring family and friends, who just do not understand. I was surrounded by folks you didn't understand either. They cared deeply about me but they had no reference to what I was going thru. Thank goodness for the internet! I found several, now defunct, medical websites with message boards. They saved me! I had people to "talk" with because locally, I'm in Ohio, I couldn't find a support group. Plenty for breast cancer but none for colorectal cancer. I leaned on friends I made on the forums I mentioned. Please lean on everyone here, you will find this Healing Well "family" - not to sound corny but I think of all of you ostomy patients as family, to those who really NEED you - as a unique, very kind group of people. Lean on your family but let go of the hopes they will truly understand what you are dealing with. I have found that most who have not experienced major surgery and/or bowel surgeries, try to understand but many fall short. They just have nothing to compare it to.

Lastly, search your area for a support group. You just may possibly find one. I think you would benefit from talking this out and letting go of what you thought would be a simple GYN surgery and recovery. That will be difficult, you're probably walking around saying that to yourself (I did! I kept saying out-loud, this was supposed to be a simple bowel surgery, 1 day hospital stay, not 7, and no bag either, patting it as I said these words, my husband would just sigh.....LOL).

Lean on the folks here for suggestions, help, advice for caring for a colostomy. They are the experts! Mine was so long ago, I'm sure the same appliances are still around but they'll be able to help you in this area probably more than I could. I sincerely wish I could just pat your hand right now and say - this too shall pass. Those words may sound hollow but they are very, very true.

Wishing you my best this morning.......
Mary
Marsky/Mary's story.....
- Diagnosed with rectal cancer, April 1999 - Stage I, no treatment necessary
(5 hour colon resection: 90% sigmoid removed, 15 inches of colon removed, gall bladder removed, given temporary colostomy)
- Colostomy reversal, June 1999
- Left with IBS/D symptoms, multiple bm's every day
- On a low residue diet at least 75% of the time
- Takes Colace 50 mg each evening

All in all I do okay, I just use the bathroom A LOT! But I survived and beat cancer!


Roddiesgirl
Regular Member


Date Joined Oct 2008
Total Posts : 262
   Posted 2/25/2009 9:17 AM (GMT -6)   
Hi Maggie!  I just read your post and wanted to give you a big {{{HUG}}}!!  I can't add anything more than what the others here already have.  I'm glad you found this Forum.  The people here are awesome and are such an amazing support system.  Don't be too hard on yourself.  I'm glad you have a good support system at home.  That is so important. Keep posting here on the Forum, and reading as well. {{Another BIG HUG}}}}....Cheryl
Hysterectomy 1998
Diagnosed IBS 2000
Vaginal Prolapse Surgery 2001
3 Hernia Repairs, 2004
Repeat Vaginal Prolapse Surgery 2006 (the mesh from previous prolapse surgery had let go and fallen into my bowels)...
Removal of mesh from bowels (it was piercing holes all through my bowels and appendix and cecum, causing 2 fistulas and heavy bleeding vaginally and rectally)...mesh was removed, two pieces of large bowel removed and resectioned with a loop ileostomy. 2008
 
I have underlying connective tissue disorder (Ehlers Danloss Syndrome) which is the reason for the two failed surgeries)
 Reversal surgery scheduled for end of March/09

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