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Hi I am also home recovering from two surgeries. It has been a terrible experience and I have never been this discouraged before either. I'm just about a month out of surgery- first one was June 4th for resection of my small intestines (ileum). I had 14" removed and it appeared I had no complications and quickly bounced back, released from hospital after 3 days! Then that very day I was released, about 8 hours later, I developed high fevers and a lot of pain. Long story short, the surgeon decided I needed to go under the knife again and turned out I had a perforation in the sigmoid colon. I awoke from that surgery with a stoma and a wound vac. The past 3 weeks have been filled with a few more trips to the ER, lots of pain, and pretty horrific wound vac dressing changed. It all sounds so discouraging but I am now finally seeing some light at the end of the tunnel. The wound vac just came off so I am a lot more comfortable but I am still having such a difficult time adjusting to the ostomy. I ordered a stealth belt and anxiously awaiting its arrival hoping it'll be more comfortable. I understand completely what you mean by the air and how obvious it looks under clothing. I guess we just have to manage and make the best of it! you should look into the stealth belt, I have read nothing but great things about it. There are also lots of different ostomy bags you can try. I went to their websites to request a bunch of free samples so I can find what is most comfortable- I absolutely hate the ones the hospital sent me on my way with. It leaks all the time!! Hang in there, you will feel much better once the pain is gone and you're up moving around again. I'm still struggling and find that reading others experiences help me realize that I am not alone in this.

 Reply posted for tndadof2.

I have had my illeostomy for about 4 years now.. At first it does feel awkward and you think everyone notices it.. But really they don't.. And as for the noise.. It does what it wants when it wants.. Sometimes it does make noise.. Not allot though.. And you get used to the bag..

 Reply posted for tndadof2.

Continued..... I am allergic to Pretty much all meds out there for trestment and have a rare blood disease. That I'm sure I probably developed from high doses of steroids to begin with. The key to the skin issue is to call around all the ostomy supplies providers or manufacturers and ask for free samples to try diff ones. It's amazing how often new ones come out and can be better than what you use currently. I just started a new one called sure for with convatec and love it. It has a turtlenecking affect around the stoma which works great for me. There are also ostomy and ccfa support groups everywhere. These are very helpful and you meet people like us! U will be amazed at how many people have ostomies! I like what one of the other people posted on saying joke about it some. My family friends and go workers all know about mine. I named her and talk about her in conversations even. It's like my own lil Part of me that's all mine and changed my life for the better! I know there will be issues still I have to deal with and I try very hard to take a day at a time. I'm even hoping to get bavk in a bikini soon so I can show her off like some others have! I'm a little ways from that type of confidence but I feel like I will totally get there. I'm happy to share my story and hopefully help others! I know reading all of your posts helps me too! I also went to Cleveland clinic for my surgeries. Hands down a great place with great surgeons! Recovery was 10 weeks with my first surgery but got less with each surgery. The other awesome thing was I was on steroids since I was 18 and never could ween off except one time for 6 month period only. After first surgery I was off steroids after a month and have been off now almost 3 years! I thank God, my family, friends and people I work with for such great support!

 Reply posted for tndadof2.

I'm 39 and have had an ileostomy now for approx 3 years! I love it! No more pain, no more meds, and no more steroids! I pray it's forever and I know it's all in Gods hands and I don't worry about it. Yes there are days my skin itches around stoma and I apply ice bag. The cold calms the itching. I still have an opening where rectum was removed and days I sit long periods do bother me some but nothing anywhere compared to what I went through for almost 18 years before having surgery! I wax always so scared of the surgeries but when I realized there had to be more to life I was happy as could be the day I was having my first surgery. The nurses were a tad shocked I wax anxious to get cut on but I really was! After waking up I had a very brief thought of did I make the right choice and never thought about it again. Healing was tough but I know it was due to tge fact I was sick going into it. I had several abscesses after surgery and ended up in hospital 3 times after but I will do it all over again if I had to. My life is painless and the steroids at 60-80 mg a day were no longer working. See next post for continuation....

 Reply posted for juliekins824.

I am trying to get info. to help my best friend's 25 year old son, who had a total colectomy just over a week ago and cannot tolerate solid foods yet. Also having bad pain. If you had this surgery and can write back with what helped, please do!  Thank you so much.

 Reply posted for tndadof2.

I just had surgery to remove my colon. I am 27 years old. I was diagnosed at 18. I was always against it and was certain it would never come to surgery. I was wrong. 

If you or someone you know is suffering with colitis and at the end of a long road of failed medicines, surgery may be something you're considering. Or maybe not. Maybe you're not ready or afraid of the unknown. I am here to help. Check out my blog about my experience! mattee66.wordpress.com

 Reply posted for tndadof2.

The doctors, nurses, and the few folks I talked to about the surgery can now tell me a big "I told you so."  While during the first couple weeks I felt like made the wrong decision to have the surgery, I'm now happy I did.  

For anyone out there undecided....please feel free to reach out to me.  I battled UC for 17 years before running out of options and having to have surgery.

 Reply posted for tndadof2.

I had my colectomy 7 months ago, j-pouch surgery 2 months ago, and next month I will have the ostomy take-down procedure.  Those first couple of weeks are really tough but hang in there!  I was really sick going into my first surgery so recovery took me a long time.  It was about 4 weeks before I really started feeling like myself again.  It was even a few more weeks after that before I was at my normal activity level.  You will get there!  Just keep going and move around as much as you can tolerate.  

As for the pouch, there's no denying that it sucks, but there are ways to make it less noticeable.  I have an elastic fabric band that holds my pouch close to my body.  I got it at ostomysecrets.com and it is amazing at hiding my pouch.  I still wear baggy shirts but people are always shocked when they find out I have a pouch.  

Let me know if you have any other questions or just want to vent about this process!

 Reply posted for tndadof2.

glad you made it through!

I had my surgery about 11 years ago, had to take a semester off from college to "recover". The key is to keep moving, as slow and maybe pain full as it is. Try to get up and walk around as much as you can. I am sure the doctor said not to lift anything for a period of time, but you should start getting energy back over a week or so.

As far as the "bag" goes, I had one on for three months and then the surgery to reverse, so I was fortunate for it to be only temporary. It was definitely very weird and made me very self conscious at first, but what helped was informing all of my friends and family that I had it and what it was. Everyone was great about it. You may have to research what foods not to eat, in order to calm your insides down when passing gas (because as you know, it does get loud and there is no way to stop it). Like I said, inform your co workers, etc., of what is going on and maybe you can get a few laughs out of it.

good luck!