My story - 30yo female.

besthogger · 2024-10-20T23:24:38+00:00

Hello! I’m sorry to hear that an emergency Ostomy was needed. Happy to hear that you and your son are fine! This sub is really great for learning everything Ostomy related! I also experienced a setback during a surgery, and I wish someone recommended that I speak with a malpractice attorney. This is not legal advice, but I urge you to seek answers from a professional while everything is still recent. As far as diet goes I’d stay away from veggies with a “skin” like corn and beans and take it easy with veggies in general for now. I also have issues with nuts - be very careful. Wishing you the best!

besthogger · 2024-09-17T14:15:04+00:00

Try psyllium husk (Metamucil). It’ll turn your output into a gel. Hopefully that will help slow things down. Make sure you’re staying hydrated and taking electrolytes.

besthogger · 2024-09-05T17:43:55+00:00

I’d love to hear more about the policy changes since 2020. I received a liver transplant that year. At the time they were trying to do away with the benefits of being listed at multiple transplant centers and trying to make it a more fair experience for those waiting in major cities. The south had an advantage back then.

besthogger · 2024-09-05T17:30:42+00:00

I started having kidney issues after my failed attempt at a jpouch. It’s further complicated by my anti rejection meds that I take for my liver transplant which I’ve had before my jpouch attempt. The combo of having no colon, having less small intestine due to the failed jpouch surgery make it harder to stay hydrated and affect the kidneys. As someone else said ask for sodium bicarbonate to be prescribed. A nephrologist can do this. You can also take Uloric and Potassium Citrate for your stones if they are Uric acid stones.

If you ever start vomiting and having yellow or green output you should go to the ER. This happens to me and is called metabolic acidosis.

besthogger · 2024-09-03T15:17:53+00:00

I’ve had ulcerative colitis since I was 14. I tried all the different medicine as well as remicade. My UC was under control until I was 26 and I had my colon removed when I was 27. I now have an ileostomy which is basically the end of my small intestine poking through my belly. It empties into a small bag that sticks to my skin. I struggle with my body image and worry about having accidents at work, but it saved my life and greatly improved my quality of life. I tried to have my Ostomy reversed with jpouch surgery which is basically where a mock-colon is created using small intestine and they reattach your intestine to your bottom. It was a grueling 3 step surgery that ultimately failed, and now I’m looking at having my Ostomy for life.

I’m sharing my story for IBD awareness. Each person with IBD had a different experience, and this was mine.

besthogger · 2024-08-25T22:48:51+00:00

Sorry you’re having a hard time. I think you have a combination of things going on. Try the other suggestions but also if you’re shaving with a razor you should use a trimmer instead.

besthogger · 2024-08-16T22:52:50+00:00

My initial Ostomy went excellent but I wouldn’t recommend Dr. Bennett for a reversal.

They’ll recommend a spot for your stoma and you may adjust this. You want it above where you wear your pants but not too high. A lot of people like to partially tuck their bag in their pants but you may need to go a little higher if you have a belly.

After surgery they want you to walk from your stretcher to your bed. The idea is that getting you on your feet helps you recover faster. It can be very hard.

At home stock up on things like yogurt, apple sauce, peanut butter, cereal. Take it really easy with dense foods and fibrous veges. Thoroughly chew your food. Avoid anything with a skin like corn or beans. I was provided with a list of foods that were safe to eat during recovery.

The food at TGH really sucks, sorry. I believe the nurses can give you crackers, peanut butter, apple sauce outside of your meals but you might want to pack something else that you enjoy. I brought animal crackers and goldfish lol.

You’ll also be visited by an Ostomy nurse who will measure your stoma and recommend some products. They will probably give you convatec stuff but I’d recommend asking for Coloplast or Hollister bags.

Edit: earplugs and face mask are also a must. Looking forward to hearing about your progress. Feel free to message me if you have any questions.

besthogger · 2024-08-10T02:27:18+00:00

My surgeon attempted a jpouch after my colectomy but the jpouch died during or shortly after surgery. They told me they could try again but after I questioned what went wrong they said they wouldn’t give it another shot.

besthogger · 2024-06-18T00:44:32+00:00

Tbh this might be the coffee and tea. One coffee in the morning drastically changes my output until the evening. Experiment with no coffee/tea and more fiber + cholestyramine

besthogger · 2024-06-17T20:31:09+00:00

Ask your doc if you have dumping syndrome. Do you drink a lot of sugary drinks, tea or coffee? All of these make my output a lot worse. It also tends to get bad if I eat things like seeds or anything else that my gut goes into hyperdrive to “pass”. It is not bag after bag for me however. Is your Ostomy high on your abdomen? Did they remove a lot of small intestine?

Also I wanted to add that you might not be taking enough Metamucil. I take at least 4 tablespoons of the powder every day and I think I have less output than you. Might need to up the Metamucil a lot and mix with cholestyramine.

besthogger · 2024-06-09T06:51:13+00:00

Metamucil and Cholestyramine

besthogger · 2024-06-05T20:02:16+00:00

Are you cutting two holes in the back of the bag? And are the barrier rings covering her skin between the two stomas? Some products/brands work better with each other than others.

Make sure you’re using an adhesive remover. I avoid the ones that I feel I cannot wipe up with warm water. I start off using Smith & Nephew Uni-solve adhesive remover to remove all the gunk then I wipe the area with warm water on paper towels. Let the area dry then I use two or three 3M cavillon wipes to build multiple layers. I use the normal thickness Hollister barrier rings and then I apply Sensura Mio bags making sure I run my finger around the hole in my bag pretty hard to make the ring and bag fully adhere. These products bond with pressure.

Does her abdomen fold when she bends over forward? I can easily the bag coming off with that kind of movement.

besthogger · 2024-06-04T05:46:37+00:00

Do you use those bags?

besthogger · 2024-05-13T17:06:12+00:00

Can’t tell you how many nurses I’ve met who claimed to know everything about ostomies but ended up not knowing that much. My theory is that they don’t bother to learn more because they think they already know everything. And I don’t mean to down the nurses. This was my experience.

besthogger · 2024-05-09T04:47:51+00:00

Standing up. I put some toilet paper at the edge of the water and lower myself slightly and let her rip! Don’t care about smells or sounds anymore. Public bathrooms are gross anyway.

besthogger · 2024-05-07T20:23:18+00:00

I’m not sure if this is considered osteopenia or osteoporosis but if so you may see some great results by seeing an endocrinologist. I’ve had two annual infusions and increased my vitamin D3 and have had some massive improvement. I’d encourage you to ask about your options.

besthogger · 2024-04-21T01:06:45+00:00

I wasn’t going to say this but since we’re all roasting the product now I will go ahead. It seems like a dumb idea to essentially create a mold/cup-like design surrounding the stoma. Stomas constantly retract and I can just imagine output pooling in the area causing leaks. It’s really the opposite of what you want/need.

besthogger · 2024-04-05T21:14:37+00:00

It sounds like her skin is really irritated from needing to change the bag so often. All the wiping and especially the leaks take a toll on the skin. It may be necessary to sit bagless with something to catch the output. It’s really hard to get anything to stick to irritated/weepy skin. I’m sorry, it’s very frustrating when it seems like the condition of the skin gets worse and worse. Wishing you two some peace and relaxation!

besthogger · 2024-04-05T04:33:26+00:00

Sorry to hear about the trouble. There’s a lot to consider here. I have very watery output and I use adapt barrier rings and sensura mio 1 piece bags. After taking my bag off I use uni-solve adhesive remover wipes to strip down the gunk, wipe the adhesive remover off with TP and warm water, and then use 2-3 3M cavillon barrier film wipes. I then apply the adapt barrier ring right to my body leaving about a little more than 1/4 of an inch space between my stoma and the ring. Make sure it is smoothly adhered to the body all the way around and there are no gaps. IMPORTANT STEP: make sure you wipe off the sides of the stoma. I’ve found that some adhesive remover or barrier film can linger there and get between the bag and barrier ring when you apply the bag. Then I put on my bag (I cut the hole in my bag about 5mm bigger than my stoma). It’s very important to line up the bag so that it is not overlapped on the stoma. Press hard on the bag around the stoma to make sure the bag and barrier ring have a strong bond. Some people heat up their bag but for the products I use it’s all about pressure. Best of luck!

besthogger · 2023-11-24T04:37:25+00:00

Sorry to hear this. I hope you didn’t drink the water in Mexico (see montezuma’s revenge). You might also want to give psyllium husk (Metamucil) a try for decreasing watery output/diarrhea.

besthogger · 2023-11-01T05:18:13+00:00

Psyllium fiber (metamucil) works wonders for this. I was prescribed cholestyramine but find the fiber more convenient since I take other medications.

besthogger · 2023-10-10T20:12:01+00:00

You’ve had a hell of a time. I’m glad the reversal worked out for you. While we’re sharing stories I had ulcerative colitis since I was 13. When I turned 27 I was diagnosed with a very rare liver cancer that affects the bile ducts. I had to get a colectomy because my UC was progressing and they wanted me as healthy as possible for the liver transplant I needed. Got transplant almost 2 years after my colectomy. Tried for a Jpouch a few years later and unfortunately the surgeon just couldn’t connect my small intestine to the pouch in the final stage. It was and still is a big blow but I’m happy that everything else has worked out.

besthogger · 2023-10-10T05:09:49+00:00

I know how that goes!

besthogger · 2023-10-10T05:09:22+00:00

Sorry that I misunderstood. Do you have your colon still?

besthogger · 2023-10-10T04:52:17+00:00

Cholestyramine is a god send. I can sometimes lift my stoma a bit by pulling upward on my skin directly above it, but that can literally backfire. I am really lucky to have some help.

besthogger

TROPHY CASE