Silver Linings

Hello guys, I am new at this too. I just had an ileostomy bag put in on the third. In the beginning, does it mess with your mind a little? My surgeon never told me the aftereffects. I want my life back. I thought it would be easy; I feel unattractive, and I have not left my home, not even to go to the store. I did lose my daughter in a tragic car accident on August 13, 2014. I accepted that my daughter is in a better place. I remind myself that if I can heal—not 100% acceptance in my heart—and learn to live every day with a smile, why is it so hard for me to accept this? Some stories made me smile. I believe words of encouragement help.

Hi Tina, Welcome to MAO! You have come to the right place to heal and learn about life with an ostomy. I agree with you, it is certainly different with a pouch but manageable. Over time, you will be very comfortable with your ostomy and pouching system. You will learn you body's rhythm. I truly believe that surgeons, unless they have an ostomy, really do not understand the loss one feels after surgery. I believe we grieve that loss. Physically you improve but I know that I had to get my head around the fact that I would never be the same, bathroom wise, again. What helped me tremendously was this site and attending Ostomy support groups in my area. Do you have any groups close to you? If you are not certain, check out the United Ostomy Association Webpage - www.uoaa.org. They list support groups by state and area. If there is one close to you, I would recommend attending. It is nice to know that others have walked this path and did very well. I have met so many wonderful people so helpful and encouraging. Write back when you have a chance and certainly post all of your questions or concerns. This site is a great resource to learn how to accept this "new normal". Lastly, regarding feeling unattractive and worried about leaving the house. I would take small baby steps....maybe now that the weather is getting nice. Maybe go for a short walk around the block. Maybe, take a short trip to the store. Start to build up your confidence. It will take time but it will get better. I felt the same way and acheiving small successes enabled me to move forward. Take care Tinafry1969. Please write back when you have a chance. Sincerely, Lady Hope

Never EVER leave home without supplies! I have a Lock & Lock container that I use for Rosebud's supplies. I have three barriers, five closed-end pouches lined with Colo-Majic liners, Cavilon spray, air freshener, wet butt wipes, and trash bags for used barriers, etc. I went to physical therapy once without any supplies and learned never EVER to leave home without supplies. My husband has finally decided that I know what I'm doing when I haul my purse with me everywhere I go. If I'm going to be gone for a weekend, I have almost enough pouches to get me through a weekend. The Colo-Majic liners make each pouch equal to two pouches - use a pouch with the liner, pull the used liner out and use the pouch without the liner - presto! Two pouches in one! Nine times out of ten I don't need my supplies, but it's comforting to know I can take care of whatever might happen because I'm prepared.

Hi Anne. I had accidents in the initial days. The bag used to come away from my skin. I finally found a bag that not only has the latex ring, but around the outside of that is a fabric adhesive ring (like Elastoplast). It keeps it held fast to my skin and even when I have a bag full of gas it doesn't leak. The gas stays inside me until I release the drain on the bag. Ask your stoma clinic if they will let you try them. They are Hollister number 5681140. I haven't had an accident since using them and now have the confidence to go to the theatre, restaurant and I regularly go swimming in them, without any problems. Any smells now are because some else has passed wind and has not come from me. Mike.

My "emergency" take-everywhere "kit" consists of two of each of the following: bag, seal, LBF wipes (six of these - simply awesome for an emergency change, no water required. Three of these clean up around the stoma beautifully), disposable bags -- and that's it! They are folded neatly into a small zip-top leather pouch, which "looks" like a purse. I just swap this over into the handbag I am using for the day. I don't get any leaks these days whatsoever, with the simply amazing appliance I am using - but I just carry them "just in case." I've been out and about in the past with no spare appliance with me and suffered such a dilemma that I would not risk being without having a "change" with me and being in that situation again. My brother, who also has an ileostomy, carries his "spare kit" folded flat in a large leather holder he managed to purchase, so these are worth tracking down - as it would look like he had a "wallet" with him (so he's not faced with "awkward questions" to answer). These leather "carriers" look a lot better than carrying a plastic or nylon bag for your goodies. The leather pouch/wallet keeps the appliances fresh too, but I do swap out and use up my "emergency" kit quite regularly at home, and replenish the kit with fresh bags and seals, as the seals can get a little squashed and out of shape in time.

Words of Encouragement from Ostomy Advocates I Hollister

To add to my above comment on "emergency kits," when I go on a 2-week holiday, I take a month's supply with me... God forbid, I may have to go into the hospital while away. It hasn't happened yet, and I pray it never does. When going away from home for more than a day, always take more supplies than the number of days you are going for. Better to have more than you need... than running out!

Love this!