Thank you for taking the time to read my post.
My name is Maggie. I live in NC with my wonderful husband and 2 Australian Shepherds. I am currently on a GJ feeding tube and scheduled for ileostomy surgery on April 9th. Any advice would be greatly appreciated.
Again, thank you very much.
Hi and welcome. Education is key on this new journey of yours. I suggest you check out UOAA, the United Ostomy Association of America. It's our national organization. Also, Ostomy101.com. You will learn about foods, blockages, skin care, clothing, ostomy products, travel, activities, exercise, and a whole host of other tricks of the trade. You might also want to check out a local support group near you. Just remember you are not alone on this new journey of yours. Wearing a pouch does not define who you are. There are solutions. We're here for you. Best of luck.
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Geekyjen,
Thanks for the reply. I will be seeing my doctor on Friday and mention Entyvio. I did not remain paralyzed for more than 2 days, but it was terrible and I was so scared. The doctors just used alot of xanax and other drugs like that to UN paralyze my joints that were being attacked by the remicade. Turns out I have been diagnosed with LUPUS. It is attacking my nervous system. I had ulcerative colitis in 1996 and they had to remove my colon. Had a J pouch for 10 years, until it started failing. I then got a permanent iliosomy, and I suffer from severe chronic diareha, and I dehydrate frequently. I recently had a proctectomy, and that is when the new autoimmune disorder, Lupus, appeared. I have had two hospital stays now because of the blisters and the paralyzing incident. I will be dealing with this forever now. I have just been working on acceptance.
I love this website because of wonderful people like you!
Betty
G-Day FunnyLucky
Just take it one step at a time, and as Riva said, learn as much as you can. The companies that make the stoma bags will send you samples; you should get a few different ones and try them on your skin. The reason for this is that some people are allergic to some makes.
Regards, IGGIE
Welcome!
The surgery is terrifying, and the thought of having an ostomy is worse. After the surgery is over, you will initially feel overwhelmed, but you will begin to adapt. Sooner than you can possibly imagine, it becomes a natural process. It is nothing like you imagine it will be. I'm 7 months post-surgery, and I am grateful to have my stomas every day. I wouldn't reverse them for anything.
Thanks for your words of encouragement. I don't have to worry about what I eat; I have a GJ feeding tube. I get all of my nourishment from formula.
Hello Maggie
Do whatever you can to obtain an appliance (bag) from the doctor, stoma nurse, and discuss the best location for it on usually your right side, perhaps a little below your navel. Take this seriously, as you don't want any of the bag/flange anywhere near your navel or any folds or creases in your abdomen when standing or sitting. Unless the bag is fastened to a flat area, it can cause leaks, and you won't be happy. This should be a no-brainer with the medical people, but sometimes it seems to be overlooked. Make it a priority.
Hi Funny, welcome to the site. Be sure to tell the surgeon to make the stoma stick out at least an inch because it will shrink after surgery, and you don't want one that's at skin level or below. Good luck.
Yes. Very good advice. Better too long than too short. As we all know, stomas are always moving. Growing, shrinking, expanding, deflating.
Oddly, I cannot remember any pain associated with my emergency ileostomy or the following recovery time. My biggest issues were mental. Prior to the actual surgery—going to the Emergency Room (several times both by car and a 60-mile ambulance trip 2 times) for stomach pain on several different occasions while doctors had different opinions about the cause of this pain is the only pain I remember. The end result was emergency surgery, and once completed, my only recollection of the entire event (now 4+ years later) was the mental anguish. Going from never having health issues until the ripe age of 76, then in one week, the trauma of it all was more taxing on me mentally than physically.
This website and research over the last few years helped that to almost entirely disappear. It even helped me to reject the idea of reversal, even though in the beginning that was my only and most sought-after goal!
Best wishes to you on a successful surgery and speedy recovery! Keep us posted on your progress and welcome to the site. jb
It's amazing how quickly one can lose good health.
Those with chronic illness may not relate to this. But for those of us who enjoyed (and, in my case at least, failed to appreciate) good health, the sudden loss is traumatic.
I want my good health back and am fighting to regain it. But I wonder if I will ever truly trust it again. I suspect I will always be afraid of losing it again.
I completely understand what you are saying. One split second of one day, that's all it takes. I personally have horrible PTSD. I also struggle with survivor's guilt.
It's been over 2 years since my near-fatal hospital adventure. I still struggle to talk about it or think too deeply about what happened. This takes me by surprise. It's so unexpected.
An old friend I haven't seen in a few years recently asked why I have a colostomy. I got out maybe 5 words, then broke down in tears. I'm really at a loss as to why this happens.
At the end of the day, our emotions find a way to escape no matter how hard we try to lock them down.
For me, it's often like stoic, stoic, stoic, then a random person asks me a simple question when my guard is down, and boom! Tears all over the place.