Coping with “forever”

Hi everyone,

I’ve had my “temporary” end ileostomy since July of this year. I had undiagnosed UC (due to my own negligence :( was trying to tackle it holistically) and developed several perforations throughout my colon that caused sepsis. I was unaware that perforations were even something that could happen to a colon. Man, did I learn! I had lost about 80% of my hair after my surgery, but now it’s growing back in, thank God. Anyway…

I was told reversal may be an option for me, but I recently found out that I actually don’t have any of my large intestine left, just 3 inches of my rectum…In the hospital I had thought I had some of my sigmoid colon left, but I must have misunderstood at the time with so much going on.

Well with that little left, and with the possibility that UC may still exist in my rectum, I just don’t feel very optimistic about a reversal. Which means temporary becomes permanent…and that’s got me down in the dumps. My ileostomy saved my life and for that I guess I’m grateful. The hospital bill is suffocating, but I digress. Before I learned all this, I was pretty set on a reversal, but now I feel like I have to re-cope with the high likelihood of a permanent ileostomy. I don’t particularly like my stoma; my skin weeps a lot (though I think I finally might found a solution that works for me) and I stay home much more than I used to because of it. Wearing high-waisted jeans seems to block the flow of output…which is the only type of jean I used to wear.

Maybe I just have a bad attitude or still working through acceptance. I’m super grateful for the community though :) I don’t know who it was, but somebody on here named their stoma “Dammit” and I think of that pretty often. Makes me smile. I kinda rambled, but would love to hear how other people have coped with their stomas.

J2,

You absolutely do not have a bad attitude. You have every right to be angry at the hand that life dealt you. How you handle it after is what defines you.

I'm sorry that UC took away your normal everyday life but it may be a blessing in disguise. I'm glad that your body didn't succumb to the sepsis. Having an ileostomy for me was a God send. I was diagnosed with Crohn's at the age of 14 and had a miserable teenage life, well into young adulthood. Nothing like having to ask your manager to make exceptions to use the restroom all throughout the day.

But i was more prepared for my surgery, where as you had an emergency surgery. I'm sure it was a shock and I'm sure trying to cope with it daily really wears on you. It will get better, I promise.

There are different manufacturer's of pouches and you may just have to try a few to find the right fit for you. You can reach out to all of them and request samples online. I'm partial to a 1 piece Convatech system myself but to each their own.

With the weeping skin, there are several suggestions and years of experience on this site which is just a quick search away. Experiment with barrier wipes and perhaps stoma powders as some are more harsh to the skin than others. But you are in the right place for support. Hang in there!

-Bain

Not a bad attitude yet. Still new at only a few months of having an ostomy and learning is where I’d say you’re at. IMO, the trick is to figure out YOUR new normal and move on with life. The longer a person dwells on their “change”, the longer they hold themselves back and not moving forward. You can’t wear high waisted pants, so what. Make a change to what you can wear or feel comfortable wearing and go on. Everyone with an ostomy as had to change their way of life in some way. So, change, adjust, and live life cause you’ve been given another chance, don’t waste it.

G-Day july2,

Great to be alive, and wanting to stay that way.

July, think hard about a reversal as they don't always work, mine didn't. I had what's called a J-Pouch for many years and it was a disaster. I begged to go back to my Ileostomy and my life now is 100% better.

July, you could still wear your high waisted jeans and let the bag hang over the top of them, then wear a loose fitting top longer than the bag. You can also shorten your bag by using the IGGIE Clip see photo.

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This allows you to shorten the bag and also secures it from opening by accident. I add a magnet to stop it opening and keeping it closed, but it does work with out the magnet.

Good luck and keep use up to date.

Regards IGGIE

Time that's what you need.....none of us fell in love with our stoma's at first sight or in the first few happens gradually over time, don't lock yourself away and hide behind closed go out with family and friends build your confidence up and trust in your bag as well there's no need to try and find the new you your the same person you have always been most important thing is keep fighting until your back to feeling yourself again in your own good time. Clothes you can wear anything from figure hugging lycra to baggy clothes whatever you feel comfortable in is all that matters.

Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister

Like Alex said, in time your new plumbing becomes your new normal, and normal is much easier to deal with than strange and scary. You get used to it, you adjust, you come to terms with it, you grow to like yourself again. I can tell reading your post that you're going to be okay.

Hi July2, I also tried to deal with UC on my own until it caught up to me with limited options. I believe it is normal to go through a range of emotions when radical unplanned events happen in our lives. A little bad attitude can be part of the process. Try to stay positive, once acceptance occurs, your life will likely be better than before surgery. Mine is. ---Littlefish

"I sat with my anger long enough until she told me her real name was grief." C.S Lewis

Like your quote a lot, as we do go through a grieving process while accepting our new normal.

It’s only been five months since your surgery. Everybody is different, but it took me a year to accept my colostomy and all that came with it. It totally changed my life, but I would have died without it. I had a perforated colon, which required emergency surgery, so it didn’t resolve any intestinal problems that I was dealing with before. Keep talking about how you feel and stick with us.

Hi Mariah, I went to a college out your way… many years ago now.

Is your temp ileostomy a loop ileostomy? If so, those are generally more difficult than an end ileostomy.

I really struggled with my skin being super sensitive to adhesive and lots of leaking due to an indent. I was seeing the stoma nurse least once a week which is a lot when it’s an hour drive and needing to find a babysitter. Everything seemed like a lot. I am still trying to figure out jeans that I like how they fit since another surgery I had this past summer. I order several styles online and try on at home. Don’t rule jeans out yet I think you can find something that works for you. I started using castor oil to help with hair loss after a type of chemo I was on for RA wasn’t kind to my body. It’s very slow to show progress but it does help. My teenage daughter keeps trying to steal what I use, so she’s getting her own in her stocking☺️

I have a feeling you poured a lot of energy into trying to treat yourself holistically… do the same for this part of the journey.

Forever is daunting… one day at a time.

The length of rectum is very important for a successful reversal. It sounds like you’ve talked to your medical team about what only 3” might look like for a reversal?

Has anyone talked to about what to do with the rectal stump if you don’t put it back into traditional use (reversal)?

Hi J2 welcome to the site, i cant add anything to whats already been said by the good folks on here other than to be patient and if you have any questions this is the place to get first hand answers.

I’m glad my body didn’t succumb too - I was pretty lucky there based on what some of the nurses told me.

I have good days and bad days of course! As far as my skin, I tried so many things haha. Domeboro, antifungal powder, crusting (I think my skin was too weepy for it to work), Vashe, different adhesives, etc. I don’t want to speak too soon, but right now Calamine lotion and a makeshift almost-non-adhesive system is working by giving my skin the air it needs to heal up.

Thank you Henry, your words are soothing.

It’s an end ileostomy!

What manufacturer did you land on?

My hair has grown back in thick, I think mostly due to a nutritional supplement called Juven. Expensive but worth it for more reasons than one. I have heard good things about castor oil though.

I’ve had a couple brief conversations with my surgeon and primary care, but am just now getting the ball rolling with a GI doc. I have an appointment set up here in a couple weeks, so still lots of investigation to do. Nobody’s talked about a Barbie butt yet, but based on what I read here it seems like that may be presented as an option

It's so normal to struggle with acceptance. I knew before my surgery and I had months to mentally prepare myself. But it was still a major shock when I woke up and there they were! (I have both a colostomy and a urostomy... double fun!)

Be gentle with yourself and try not to judge your feelings. You will find a new normal and life will go on. Make the most of it!

Hello, I had sigmoid colon perforation due to hernia repair mesh adhesion. After surgery, woke up with a surprise colostomy. Was told it could be reversed in 6 months. Didn't happen. I'm now at 3 years post op. Took almost a year to find what works: barrier rings, skin care, technique. Life gets better.

You've been through a lot, and you've had to adjust your expectations. Your attitude is perfectly understandable. You are young, and the prospect of a permanent ostomy is tough, especially when you thought it would be temporary. Acceptance can take time. No one here wanted their ostomy, and few were happy with their situations immediately. I couldn't even look at my stoma at first. It disgusted me. Now I love it and appreciate it every day, so it is possible.

I was told a reversal was possible, but after doing the research, I've decided against it. People with no colon have a much lower chance of a successful reversal. Probable outcomes include having to go constantly, so being tied to the bathroom, and having chronic skin irritation and rawness to the area around your anus from the caustic nature of the stool from the ileum.

I cannot wear high waisted pants, which bummed me out for a while, but I've gotten used to hipsters, and it's OK. Because styles are constantly changing, and hipsters are almost impossible to find these days, I buy a higher waisted pant, and have them altered for me. It's a pain, and added cost, but worth it.

Reach out anytime you are feeling down or having maintenance problems. With a little help, problems can be solved. This is also a good place to vent your frustrations. We all have them, so let it rip. We have some fun here too and believe it or not, there is a thing called 'ostomy humour'!

Terry

TerryLT,

That's exactly what my surgeon said to me when he told me that my tumor was still retractable but that things would be permanent, "Nobody wants a colostomy". :) At that point in time, I didn't even realize that there was such a thing as a reversal (not that there was going to be anything to do a reversal with). :O

After chemo, I was about to have radiation thinking that the tumor would be dead and the surgeon would just go in and remove it. Simple. After I was told that a colostomy would be next, I decided to end my treatment (didn't do radiation at that time) and looked for a way to debulk it. I went to a doctor (MD) of Functional Medicine because he said he had good success using high dose vitamin C and that he might be able to reduce the tumor from 5 centimeters to 1 mm. I went 3 days a week (sometimes 4) for 2-1/2 months or so. I started to feel pain toward the last few sessions and I thought it was because the vitamin C was killing off the tumor. The pain intensified and I ended up in the emergency room with sepsis (which the doctors and the colorectal surgeon) said was almost certainly from the tumor. Imaging showed that the tumor grew another 2 cms, moved upward and attached to my prostate. When the surgeon came to visit me while I was recovering from the sepsis, I told him that my plan A was to debulk the tumor. He said doing that might be available in 5 years or so but that it wasn't available now (that was 2 years ago). He asked if the doctor who administered the vitamin C was a MD. When I said, "yes," I was able to see that he had a hard time believing it. :) Before surgery, I felt being on a bag was like dying. But it was really the only way for me to be healthy, again. Nowadays, like many of our ostomates, I'm happy I have a stoma. Luckily, I'm able to keep everything neat and tidy. It sometimes gets a little loud but it's really settled down a lot from what it was doing when it woke up from surgery and started "talking." I thought it was going to be barely noticeable. It was able to wake me from a deep sleep! I've only ever used the Cavilon barrier liquid film and that has worked very well for me. I tried the cream version that they make but that prevented my wafer from fully adhering properly and I ended up doing a change the following day.