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TaraJ83
  • By TaraJ83 · September 4, 2012 at 6:45 pm · 61 replies
  • In Coping after ostomy surgery
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Hello, my name is Tara and I am 29 years old. Last wed the 29th I had surgery to remove more the half of my colon and now I have to wear a ostomy bag. Mentally this is still very hard and new to me. The doctors are saying there is a good chance of reversing it, so I am very hopeful for that but I don't want to keep my hopes up too high because I don't want to be disappointed. Anyway I just wanted to introduce myself and I hope this will be a good way to start healing & move forward with my life. I welcome anyone to talk to:-)

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61 replies   

gr8fulgirl

welcome to this site, tara. i hope you find, as i have, the comfort and love we all are here to give you. you have just had a huge surgery so give yourself lots of love and patience and time to rest and heal. we are all here pulling for you.

whatever questions, frustrations, fears you have as well as successes, joys or funny episodes you encounter are all welcome to be shared here. this is a good time to rest and read the posts under all the many topics. sending you healing thoughts and prayers for a quick recovery!
barbara

mksmia

Hi Tara,
I'm sorry that you had to go through surgery, and I hope your recovery goes well. I am also a fairly new member to this site, it's been seven weeks. You will find that no matter what the topic is, whether it's a question, or you just need someone to listen to a concern of yours, this site is filled with amazing and inspirational people. I have found it to be a very important part of learning to cope with my new life. I also suggest you go to the UOAA website and look into support groups in your area. I hope your feeling better soon, Karen

Dan53

Tara, I know all to well how you are feeling. My illeostomy was on Jul 27th. I lost my entire colon because it died do to lack of blood to it. It was and still is a shock,but the old cliche' is really true. Time does heal all wounds. I pray for you that yours can be reversed someday, mine cannot. My faith in God and the wonderful people on thissight have really been a blessing to me. They can provide you with great strength. God bless you. Dan53

pjs62

Hi Tara!

I'm kind of new here too but felt welcomed right from the beginning. I've had my ostomy (due to cancer) 6 mo. now with no chance for reversal. It does take time to adjust to the 'new normal' (my doc said 6-8 mo) but with the support of family, friends, fellow ostimates...it will get easier day by day.

Blessings...

Peggy

Balloonatic

Hello Tara,

I am sorry to read of your very recent surgery, it is major surgery and very hard on the body and the mind. You will probably be very weak for a while. When you have a down moment or hour please remember one thing you are alive because of what the surgeon was able to do for you. The early weeks after Ostomy are difficult and make most of people wonder how we will be able to cope "with out new normal". On this site you will see discussions where you find out how so many others are not just coping but doing all of the thing they were able to do before, swimming, scuba, skiing, riding and the list goes on and on. My surgery was on April 23, 2012 due to an emergency diverticular rupture, I woke up with my Ostomy. The good part of course is that I woke up. There are difficult days in the first months after an Ostomy but many good ones in between. Soon the "good days" are the norm and the bad ones become stories to share or laugh at.

Mare5785

Hello Tara,
Some wonderful, supportive words in the earier posts....I agree with each of them... and say the same words.

You did not say why you had the surgery so I checked out your profile.. Crohn's & Colitis.. Nasty disease... I have had Crohn's since I was 10 years old and had my surgery when I was 29, a year after I gave birth to my son. I know just how you are feeling and have been in your shoes., as others in here have also. This site was not available back then... I'm happy that it is here now for you.. and for everyone else who needs the support, suggestions, care, concern, love and prayers.
The mental struggle and the physical will take time to heal. This is a great place to come to for asking questions... sharing your feelings.. we understand.
Praying that the "temporary" ostomy will give you much needed relief from the pain and sickness you experienced prior to your surgery. Also, that once things calm down and you are healthier, that the reversal will happen for you!

Take one day at a time Tara... We are all here for you!!

Prayers & blessings,
Mare

alan41241

Hi, Tara!
I'm glad you found this site. I've been a member since late March and have net some wonderful people who truly care. My surgery was March 12, 2012 due to ulserative colitis. I had an ileostomy with total colectomy which means a reversal is not possible.
At first, you will be very depressed. Everything will seem overwhelming. You will wonder how you will cope. All of that will change with time. I asked my ostomy nurse about depression and she told me she would be worried if I were not depressed. That told me that everybody is.
I have now become used to the pouch and changing it or emptying it is kind of like brushing my teeth. It's just something I do. I used to wonder how on earth I would remember all the steps in changing the pouch. That lasted for about a month. When I realized that thousands of people change their pouches every day I knew I could learn how too. And I did.
I hope yours can be reversed but if it can't, having a pouch isn't the worst thing that could happen to you. It's a "friend" who saved your life. Remember that when one of those dark days appears out of nowhere.
Blessings,
Alan

herbsgal70

Welcome to our "ostomy family" - like you, I had emergency surgery for a perforated colon due to diverticulitis - and extensive scar tissue, as well. I am 80 years old, and have elected not to have any more surgery - surgeon told me I could live wih my ileostomy, and that is what I will do. You will find all kinds of support, advice, commiseration and comfort here - whether it be for an ileostomy, colostomy, or urostomy. Remember - there are no stupid questions - so feel free to ask anything. I am getting to be known as the "Depends Queen" because I advocate wearing one at night in case of an accidental leak - or on long auto rides. That way any mess is contained, and not all over you, the bed, and anyone who may be sleeping with you (in my case, it is my husband). You will read some real horror stories here about accidental night leaks - but I have never had to change any bed linen - just throw away some old underpants I have on under the Depends - along with it - shower and change and go back to sleep in my still-clean bed. Better to be prepared than cleaning up a miserable mess in the middle of the night. Take it easy until you are well healed, consult with a WCON (Wound Care Ostomy Nurse) for any problems with your appliance, and ask anything you like here - we have all been there! Hugs from Marge

hockeymom01

Hi Tara, Everyone pretty much said everything. I'm sorta new to this to had my surgery in June and I have received such wonderful advice from friends on this site. they will give you wonderful advice. Take care and get lots of rest. Hockeymom

MsJearl

Hi Tara
Welcome
I am new to forum. I am Jearl from Maryland. I have two ostomy bag(ileostomy and urostomy). They are permanent and I have had them for about over 35 years. I developed a rare form of cancer at 3 years old; went through chemo and radiation. And because where the cancer was located reconstructive surgery was not optional, so there you have it; I have 2 ostomy bags and here to tell my story and give others encouragement. I can say that I did not have forums like this when I was younger. I am so glad I found others like me because sometimes we feel no one understand. And I will say if someone never walked in our shoes, they fully don't understand. BUT WE DO... When you get a chance go to my Journal section and red my story, it's called "Pretty Girl Blues" ...I am here if you want to talk further.

HappyS (Inactive)
  • By HappyS (Inactive)
  • Reply 3349037
  • September 5, 2012 at 9:23 am
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Hello Tara,

This is a great place where no one is shocked by anything and we all understand because we have a stoma - although we may have arrived at that by a different route - mine was colon cancer.

Some really good words of wisdom and friendship above with which I agree. Just take it easy, you've had one of the most challenging operations anyone can have and it takes time to heal, adjust and get strong. Don't push it. If you want to scream do so it's good therapy but remember that your stoma is a life saver and as much part of you as your right hand - and just as useful.

etrain46

Welcome aboard Tara. I'm a 'newbie' to this site as well. My surgery was June 19 and, yes, it was a rough road for awhile. When my Doctor dropped the "C-word" on me I thought my world had just come to an end. I believe my blood pressure at that time could have been read on a Richter Scale! He didn't mince his words...the only alternative was not a pleasant one. Now, after 2½ months, I'm still adjusting but it's getting easier, especially since I found this website.

KDF6952

Tara
Last words out of my mouth before surgery July 30 were reminding my surgeon of two things. Small incision and no pouch. No problem. Woke up in ICU with pouch, 30 vertical staples and a complete hysterectomy as well. Things had not gone as planned. Pouch is temporary. Didn't need my girl parts at 56. Best thing I am diver pain free for first time in 3 years. Healing from surgery has been fairly quick. After joining this 'club' I have realized I am not alone. Any issues I've had so far have been answered. My pouch still intimidates me a little mostly on changing day. People on this site are funny, spiritual, knowledgeable,caring and great listeners. If possible sleep when you're tired, eat when you're hungry, cry a tiny bit if needed and in between visit us here. Take your pain meds as scheduled. It helps with recovery to stay ahead of the pain. Tommorow could be a better day. I'm in week 6 post op and still taking it one day at a time.

alan41241

I know just how one can be affected by the word "cancer." In April, 2001, my mother died as a result of colon cancer. In August, 2001, I learned that I had prostate cancer. You talk about scared! I couldn't believe I was about to face what my mother did.
My urologist took biopcies and when they comfirmed that I had cancer he called me into the office to discuss options. There were five. The first was surgery. The last was to do nothing. My PSA count was 4.7. I chose to have radio active seeds implanted in my prostate and that procedure was done on February 4, 2002. Now here we are 11 years later and I am still cancer free. My PSA count is zero. So, even though cancer didn't bring me to this site, I have dealt with cancer and know how scarey that can be.
Blessings,
Alan

Chriswife

Hi Tara,

I had my ostomy surgery 8 weeks ago and at first it was difficult on me. I was on here daily asking question after question. Everyone here is awesome!!!!! There is no question too small or any concern irrelevant. Ask away!

As far as the mental part of it, I am 46 years old diagnosed with rectal cancer. I had the option of perhaps having a reversal done, but after thinking about it, I decided to go with a permanent colostomy. I have no chance of reversal as my rectum and anus were removed as well. I am telling you this becaues if you can't have the reversal done, it is not the end of the world. I have been at this only 8 weeks and I am already used to emptying and changing my appliance. It is really not a big deal anymore. I still have questions because I am always concerned about doing things "right" (whats that? lol) and everyone is here to help

Keep a positive attitude and once in a while if you feel down, that is okay too. Just try to have a normal life (once you heal) and keep coming to this board, we are here for you!

Kerri

tjane

Hi Tara everyone has given such good advice. I also have Crohns. I have had 2 colostomies and one iliostomy over the years. The other ostomies I had were in the 1980's and reversable. This time it is permanate. Take your time and heal fully before you decide on a reversal. The stronger you are the better your chances on the reversal. I am sure you will go through a host of emotions during your recovery. Just go with the flow and give yourself some time but like all of us here on this site have stated it does get better with time. Be gentle on yourself.

Cb45

Hi Tara!!

This sight is wonderful. We all understand frustration, depression, anxiety and celebrate good news!!! Glad you joined us.

Clara

Whzbang

Welcome, Tara, to this group! I can echo what other members have said... this is a terrific support site and please make yourself at home here. There is no question too silly or embarrassing to ask, and if you read past posts, you will see that most of us are not shy about asking anything. Where else can adults go to share stories about their poop? But after all, with an ostomy, we become intimately involved with it.
I appreciate your attitude about not setting your hopes too high on getting a reversal. If your doc thinks it is a possibility, take comfort in that, but in the meantime take one day at a time coming to terms with your "new normal". There is a steep learning curve while finding the right products for your stoma, and getting into a routine that works for you. Believe it or not, you will get used to it and make it work with your lifestyle. If your focus now is on getting your pouching system comfortable, you will come to accept it more quickly.
My emergency colostomy was in May and I in fact had reversal surgery last Thursday, 3 mos. 10 days later. The day before I went to the hospital I was cleaning up my vegetable garden for fall, getting stuff put in storage for winter, etc. in other words, I was back to my old self and in fact was very proud of how well I was doing with the bag. It was working for me for sure and no longer a huge issue.
Take good good care of yourself at this time. Rest is so important to your healing.
Cheers, Cindy

sweetie3

Hi there Tara
I have the same thing going on. I have an ileostomy for 2 months going for 3 and I'm adjusting. At first it was really hard for me i was really depress and didn't want to talk to no one because i felt like no one was going to understand me. I didn't want to go out because i thought people where going to be able to see the pouch or it was going to leak. I hated the pouch so much and my eyes would tear up every time i saw it. As time went by i got used to it and when i found this site it made me feel better. I was not alone. Everyone is nice here and very helpful. Any question you have ask. It's don't matter what don't be shy. Good luck with everything.

herbsgal70

Hi sweetie - I had emergency surgery with an ileostomy 3 days before Christmas - Happy Holidays, spent in the hospital. I was never depressed or reticent about talking about it, because I was so happy to be without pain that lasted sometimes for over 12 hours that I welcomed it. At age 80 I will not have reversal surgery, because it is life-threatening, as well as the first one, and have decided to just live with it the rest of my life. Hope you have adjusted to it by now. Hugs from Marge

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