I have so much to share about my personal experience and it begins here. I've been home from the hospital for 3 weeks and am still wrapping my head around exactly what happened. I have increasingly had food tolerances over the last 20 years or so. I've never been diagnosed with any digestive disorder or any food allergy. I've always had issues with regularity/constipation but never to the point where I was noticeably uncomfortable or concerned. I had a clear colonoscopy a few years ago, as well as a hysterectomy due to a large uterine fibroid, and an abdominal hernia at 40 from too much physical work. Before all of this I had 2 natural at home births without incident. I'm a very physically active person with 3 horses at home, a certified Barre instructor and yoga practitioner. Who knows how this whole thing would have turned out if my mind and body were not in a healthy place going into this. It all started after I had some dental work done that required me to take antibiotics. The first round I discovered contained lactose, I tried to counteract with Lactase and it probably didn't help. I haven't had antibiotics in decades. A week after my last dose I felt my large intestine was inflamed and painful. I tried to dial it in with a lot of prebiotic food, sauerkraut, coconut yogurt, pure cranberry juice. My diet was already really healthy, I'm not a vegan but avoid all preservatives and processed food. Off the list were, dairy, soy, legumes, pork, pineapple, stone fruits and cruciferous veggies. I managed to stabilize and told my dentist what had happened. 6 weeks later, dental surgery, more antibiotics, different kind. This is where it all went sideways. I started feeling not so great mid November, at a company party I took a lactase pill thinking I could tolerate some of the food that I normally can't. I also inadvertently ate a couple of bites of sausage (in the stuffing) and mac and cheese with processed pasta. I'm not gluten intolerant but it needs to be without additives. Fast forward, after Thanksgiving my belly was as if I was about to give birth. Went to urgent care, sent me home to take Miralax, lab tests showed I had no healthy gut bacteria at all. This didn't work, 5 days later I went to the ED. Took an x-ray, my intestines, everything was severely impacted. Sent me home to do colonoscopy prep. I drank the 64 oz. liquid etc..which made me feel like I was going to literally pop. I drove myself to the ED the next morning and waiting for 7 hours in pain before they took me in. Again, tried to give me things to drink until I started throwing up bile. Took an MRI and whisked me off to the OR, tried to do a colonoscopy where I aspirated and developed pneumonia, was intubated and the GI doctor was replaced with the surgeon that saved my life. She discovered that my large intestine was perforated and leaking and ended up removing that whole thing as well as my gall bladder and appendix. I was in a coma for 3 days and my husband had to make the decision for them to perform the ileostomy. I was in the hospital for 12 days. I also had 30 staples from my sternum to my pubic bone. It's been a lot of work every step of the way that's for sure. My whole life has been forever affected. I can tell you from the minute I was conscious and aware of what had actually happened I could only be positive because I had survived. The feeling of being able to be alive is what matters. Having friends, family and associates that care about you is what matters. It's amazing how an event like this can make you stronger, healthier and mindful about every moment. My daughter came to see from across the country and I can't even begin to tell you how much that meant. She was with me for my first visit out of the house and I drove. This was 3 days ago. I started to feel like myself again. We went out again the next day but I'll be honest, I'm tired today. I don't want to overdo it and my body tells me when to slow down. I've been increasing my walking because I know that will help. My diet has been deliberate, of course. I just switched up my previous vitamins to liquid versions as per my primary care. She is an integrative practitioner which is important to me as I tend to follow a holistic approach to my life. I'm curious to see if I can tolerate some of the foods I previously couldn't. I'm looking into getting some bone broth protein to meet those protein requirements. I have been eating eggs, salmon, turkey, beef, almond butter and hydrating with coconut water, I love to cook so I'm finding some great solutions to meals and am still able to incorporate a lot of what I previously made. I'm happy to share any meal ideas for anyone who might have some of the same intolerances. Movement is important to me and crucial for the best healing. I've been doing some very light stretching and being mindful about my posture. I've also been using a heating pad on both my belly and my back when they are feeling achy. I'm still learning about all of the products out there but feel like I'm dialing it in. I'm not thrilled with the big wafer and so much tape. My goal is to finally get to the size my stoma will be and use a one-piece pouch with as little excess tape, etc... I did have some broken skin below my stoma, I tried the CeraRing and it took me forever to get the adhesive off. Not a fan personally. I try to take a shower with my pouch change to give my skin a break and some air. I try to leave it off for as long as possible. Lastly, be brave. Be you!! I'm finding that I can wear all of the same clothing as I did before. Get creative. I can tuck my pouch into underwear, tights or my waistband. It's not even noticeable that I have had one. I am looking forward to trying some of the products that people make for when I wear fitted skirts or dresses. There are some great ones on Etsy. I also have started following some amazing inspirational people on Instagram. There is a whole community of us out there. I'm a little surprised at how little current info/support there is in the US, seems to be more in the UK and Europe. Expand your horizons! Thanks for reading this. I will be posting more and hope to be sharing my story and experience on different platforms. I feel it's important for anyone interested in digestive health whether it be for themselves or for a loved one that we help educate people from our own experiences. The medical industry and doctors are specifically trained. I have had to advocate for myself every step of the way in this journey, before, during and after my surgery. Speak up and ask questions. More on this topic later. Thanks for reading, I hope you found this helpful and please don't hesitate to ask me any questions.
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Hi Stephanie and welcome. Considering what you have been through, you are doing really well and have clearly learned a lot. I honestly don't think I've ever seen someone as 'new' to being an ostomate, post to this site, offering help and advice, rather than asking for it. Your attitude is great, and your acceptance of the situation that life has handed you is admirable. Knowing that you need to advocate for yourself is so important, and will serve you well. I would only caution, that as a newbie, you have a learning curve ahead of you. Things may change as your body adapts to its new reality. I would suggest you try lots of different products from the ostomy suppliers. They are all happy to send you free samples, and what you are using can make a huge difference in your quality of life. Don't settle until you find a system that really works for you. As far as diet goes, it sounds like you are trying lots of things, which is good. Don't assume that anything is off limits for you, as everyone is different. Try everything, just use caution, chew well, lots of liquids to wash it all down. In case you haven't been told, as an ileostomate, you need to keep really well hydrated, as the small intestine does not store liquid like the colon does. You need to compensate for the loss. As to exercise, it sounds like you are being careful, but I just want to make sure you are aware of your increased risk of hernia. Three weeks in is very new! It may surprise you how many ostomates come through surgery without being given the basic information they need. It doesn't sound like that is the case with you, but better safe than sorry. Good to have you on board!
Terry
Thanks for sharing your journey! Everyone seems to have a different journey with the same result... here to share our experiences. It's really good to hear everyone's journey... Keep us posted and good luck!
I look forward to reading more of your posts as time moves on.
Best wishes
Bill
Hi Stephanie, welcome to the site. Like Pat said, give yourself time to heal. Three weeks out is very early on, and though your outer wound may look healed, the inner parts take much longer. When I had my first surgery thirty some years ago, I ate small meals more often, especially pasta with meat sauce. Also, different meals with chicken.
Hey Stephanie! This is quite a story! I too suffered from chronic constipation since I was 12! It is amazing I never had a perforation. I have an ileostomy (since 2015) and while I have adapted well and gotten the routine down. Things will evolve and you will settle into a routine. Don't push your body to do vigorous exercise just yet. There is a lot of healing that needs to happen. Make sure to check out the UOAA site which has tons of good information. Good luck and keep us posted.
Hello Stephanie. I had emergency surgery 23 years ago. I had severe Crohn's. One thing I discovered over the years is that without a colon, staying hydrated is much tougher. It seems to me that drinking water alone with no food mixed with it is the only way to ensure hydration. I'm curious what others have experienced. I wish I had known sooner. A great attitude is most of the battle. Bless your husband for his decision!! Jeanne
Thanks everyone who left me a message! I value your advice and experiences. It's nice to have a place to learn and share with others!????
Welcome Stephanie. I know how emotionally challenging it is when you think you're taking such good, intuitive care of your body and mind only to be hit hard. It definitely changes you and how you see yourself and the world, much for the better (in my case, after I cried and cried!) Know that you are an incredibly positive influence on others because of that. Happy new year to you!
Hi Stephanie. It's great that you are being so positive and grateful about your outcome. It means so much to your recovery. I definitely agree that you need to ask questions over and over and if you feel that your doctor isn't giving you the answers or helping, move on and find another doctor. I am on my 3rd gastroenterologist in the last year and finally feel that I have someone that is listening to me and helping me.
Best of luck to you.
Connie
Welcome Stephanie, thank you for sharing your story with us, Ostomate. Happy New Year blessings for a wonderful year ahead.
Welcome Stephanie, thank you for sharing your story with us, Ostomate. Happy New Year blessings for a wonderful year ahead.
Welcome to the club. What a story. You will do great!!! It is a bit confusing and scary at first. With time, you will hardly know you have an ileostomy. Contact your local ET nurse, and they have tons of different appliances you can try or reach out to the different manufacturers and ask for samples. Try different appliances until you find one you like and works. Just because the hospital sent you home with one does not mean you need to use that one. Good luck and ask us questions. We all can help you on your new journey :)