Upcoming Surgery Oct 23 for Ileostomy

Hello, I'm new here. My name's Tanika, I'm 28 years old and I've had Ulcerative Colitis since 2020. I've failed all the meds they've given me. The only one that has worked was Remicade, but I built up antibodies to it. Now we're going down the surgery route. I've been in a panic state since finding out, and I need some help or advice. I'm very worried about this surgery. I'm worried about the pain afterward and that this surgery is going to make me feel old. Like, I'm not going to be able to do anything anymore. I was very active before I got this disease: building things, lifting, exercising, moving things, working outside. I haven't been able to do a lot of that for a better part of these five years. I'm afraid I'm not getting that back. I hear all these things about perforations and blockages and how with an ileostomy, you still can't eat certain things or can't do certain things, and I guess I'm just wondering what it's worth? I'm having laparoscopic surgery on the 23rd of October, and I'm panicking. This is it for me, so part of me really doesn't have a choice, but is this going to be worth it?

TIA

Hi TIA!

You're asking the right group of folks these important questions. There's a wealth of experience and inspiration here, along with a generous atmosphere of support.

My husband is only two months into a colostomy, so we're in the 'figuring it out' early stages, but the improvement in his quality of life is already beyond what we could've imagined! The pain he was enduring prior to surgery was so much worse!

He's amazed at what it feels like to be without pain, and we're so grateful to have a chance to create this next stage of life and adventure!

We call him 'the happy ostomate'.

Wow, in 5 years they went from medication to surgery?

Took me all of 40 years to have all the meds stop working. We tried everything. I'm surprised how quickly these days, doctors move from meds to surgery.

Then again, the unknown long-term effects of these meds to control it are equally unknown. So it just might be in your favor to get the surgery now.

Keep in mind we have good folks here with either ileostomy or colostomy, offering experience and suggestions that work for them and may not work for you.

You are 28, and that is gonna help you recover so much faster than, say, someone in their 40s or 50s.

Keep that in mind.

And whoever is telling you these "tall tales" about having restrictions, are they as experienced as the 40k members here offering it?

Your worry is normal, and we understand because we were once in your shoes.

I doubt any "professional" you have spoken to sports a bag 24/7. Keep what matters in sight. Ask questions. It's gonna be rough, but you will come out much better than you were.

This place and people know their...shizt.

Sit tight. My brothers and sisters here will chime in with do's and don'ts. And specific questions to ask your doctor.

Get prepared. Take notes.

Yep! All of 5 years. I was on Remicade for about a year before I developed antibodies, went onto Xeljanz, which put me in the hospital because I got worse on it. Back on Remicade for another year, onto Rinvoq, and now Tremfya, but Tremfya doesn't seem to be doing much for me, so my doctor sent me to a surgeon who said it looks like no meds seem to be working and we just need to do surgery, and now I've been worried. It's coming up very fast.

I'm so happy to hear that! Thank you for replying. I understand the pain; it can get very bad! Mine has never gotten to that debilitating pain, but it has gotten bad where I've just sat and cried, which makes me worry. I don't know what I'm in for after the surgery. I hear that people's lives have drastically improved with the ostomy, but the way my surgeon explained it, it seemed more like there wasn't going to be much *I* could do. My nurse is very skinny, so she bounced back after surgery. I'm not very skinny, so he said it might be a lot worse for me, healing-wise, pain-wise, and just all in all.

Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister

Skyrizzi is new. Have you heard about it?

Re: your nurse being skinny? And bounced back? She had an ileo or colo?

If you are a bit overweight, you best be sure to tell that surgeon you don't want the stoma in a fold of skin if that is possible. And ask how much intestine will be removed. He should pull that stoma out far enough to compensate for those folds in skin.

The most you should fear is being sent home with it and what they removed, how much intestine is left or taken, and having no training or information on it or the products you need. That is real fear.

Welcome, Tanika 

You won't know yourself after the op. Yes, it will hurt, but that will pass. All that crap you have been through will be a distant memory. The most important thing now is getting hold of an appliance/bag from a stoma nurse, hospital, or wherever, using it as a guide for placement. Make sure any part of the adhesive flange is nowhere near a fold in your skin when you sit or stand and nowhere near your navel. You need the flattest, smoothest surface for the bag to adhere to; this is most important.

I have heard of Skyrizzi. I was confused as to why we didn't try all the drugs out there: Entyvio, Stelara, Humira. But my GI said, once you fail one of the strongest ones, the sister drugs aren't likely to work as they're not as strong. I also wasn't on the highest dose of Remicade that I could've been on for my weight, but again, he said once you've built up antibodies, it doesn't matter on the dosage; it's just a matter of time before your body becomes immune to that dosage as well.

I believe she has the ileostomy. Non-reversible. She said within month 2, she was back at the gym, doing all of the things.

They said they're putting it right next to my belly button. No skin folds there unless I bend over and create one. I didn't think about those questions. I'll make note of that. Thank you.

Hello, thank you for replying. I've heard life can get better after surgery and the disease being gone. Mine will be permanent. I have two ostomy nurses who will be with me in the hospital and have home visits. I did have a sample, but within 30 minutes, the bag fell off. I'm not sure why or what I did wrong, but it didn't stick to my skin. The stoma will be a few inches from my belly button.

Hey,

I had the laparoscopic surgery for an ileostomy in 2024. I was the same; the meds failed to control my UC, and my body lost so much weight it almost gave up.

The surgery gave me back my life; my energy levels returned to pre-flare-up levels almost within 24 hours.

Yes, you still have to be careful about what you eat, but with enough trial and error, you should find a balance that works for you. I would say a lot of green vegetables are out of the question, but I have known others to be able to eat this without much problem. Skins and seeds can be an issue also, so for example, jam I always buy seedless (guess if you're American you call it jelly) 😜.

The pain after the surgery isn't bad really, given it's done by keyhole. A hell of a lot less painful than the open surgery I had 3 years prior to the ileo.

If you wear correct and comfortable anti-hernia wraps, there isn't much that you wouldn't be able to do; just build up to it slowly (I'm planning on running some 10k events next year).

You're young, so that will always go in your favor. I've got 11 years on you and found I can be quite active without much issue.

The issues I have now are not ileo-related.

This is a great place for advice and support; you are amongst many who have had this surgery for years, so tap into their knowledge.

The best thing to do is keep a positive outlook; this is a way to be rid of the UC and give it the big 🖕🏻 and say F**k you to it.

It's not all plain sailing, but with the right preparation and mental attitude, it's far more manageable than living with UC.

There is a quote from a film:

“Proper planning prevents piss poor performance.” I think it fits very well with what we all face.

Wish you the best of luck from the UK 🇬🇧

Mr B

The other side of the story….
Ileostomy here…My emergency surgery was due to an orange-sized non-malignant cyst. Prior to surgery, I was a very healthy (no meds) senior. The only pain I suffered was about one week prior to surgery. My ileo was (and probably still is) reversible, but I decided against it. On this website, I frequently claim…no meds, no doc, no hospitals UNLESS I am in pain. If I were younger, I may have opted out of a “bag life” in favor of reversal…then again, maybe not. It is such a personal decision and should be thoroughly investigated.
I totally understand your fears, which are normal. Your post makes me feel that this decision is being encouraged by others rather than yourself. At 28, you have time to try alternative medications - this is not an easy path, but neither is the alternative. Maybe even get a second or even third medical professional's opinion.
This surgery is a lifetime journey, and you have a whole lotta life in front of you. Have you considered postponement and further researching? An individual's pain and pain level cannot be judged by others, so comments here are just that….comments.
Finally, I will tell you I am very fortunate…I am pain-free and my ostomy journey was greatly helped by this website, so you are fortunate to have found MAO, read, and digest…
I would not have chosen this journey had I been given alternatives, even though my life is very near my previous normal. I have no pain, and I am able to eat everything I previously ate. The only thing I gave up was adult beverages, which I dearly miss. The downside is bags and all the related paraphernalia and skin irritation. I also became a “homebody,” but at my age, that wasn't such a big deal.
I am a believer in “signs” and my own good judgment, which, along with research, helped me to make a decision regarding possible reversal.
Dealing with your fears is normal, and seeking input is helpful. My hope for you is that you will go forward with confidence in your own decision…jb

It's normal to be nervous and fear the unknown. I wouldn't believe anyone that said they didn't feel worried, but the good news is that on Oct 23, you start to get your quality of life back 🙂. For the first 2 months or so, you need to be cautious not to overdo it; after that, there will be no stopping you. You can do anything anyone without a bag can do and more, as we're unstoppable! I've had my ileostomy since I was 19; let's just say that was a long time ago 🤣. It never stopped me from doing anything. I used to strength train, so I lifted serious amounts of weights and have always been a gym addict. I used to do martial arts too; you can do any contact sports, like rugby, just wear a stoma guard for them.

G-Day TIA,

Get all the companies to send you free samples and try them for comfort and if the adhesive is okay for your skin. If, as you say, it's going to be permanent, then make sure the stoma is far enough away from your belly button so the base plate is not over the hole.

Are you having your colon removed? If so, are you also going to get a Barbie Butt? I am asking this because that's how I went, and it stops any chance of colon cancer or butt cancer, as well as mucus forming in your butt after surgery.

As you are so young, you will heal faster, and when all the surgery pain is gone, you will feel like a new young lady.

Give all the samples a try and tell the surgeon where you want the stoma, not where he wants it.

We are all here for you, and I am sending you good vibes to make it all go well for you.

Regards, IGGIE 🦘

Hi Tanika, I'm inclined to agree with Just Breathe that you need a second opinion, especially with the other new meds out there. Like you, I was fairly young when I got my ileo. But now it's 40 years later and still plugging along. I battled UC also, but since my last surgery for a resection, the pathology confirmed Crohn's, which has caused me problems over the years, but nothing that I couldn't handle. I have two older siblings that have Crohn's but refuse surgery, but have the benefit of the newer meds. But you know, one or the other is at the doctor's office with issues, but not me.

Balance the pain you are having every day with the potential relief.

You can do anything you want with an ostomy... swim, soak in a hot tub, climb mountains, whatever your heart desires. The ostomy does not limit you, but illness does.

Ostomy food lists are not helpful. Everyone is different. Some people eat whatever they want, and others have restrictions. The restrictions vary by person. You'll need to do some testing to see what works for you.

I am concerned about your statement that there are no skin folds unless you bend over. In living your life, you will bend over. Your ostomy needs to be located in a spot that is free of skin folds when you bend over or move around. Your ostomy nurse should help pick the spot. When I met with the ostomy nurse prior to my surgery, we were unable to find a suitable spot lower down, so she marked my placement a couple of inches above my bellybutton. It has worked out well for me.

Agree. Below, beside, at least 3 to 4 inches from the bottom to avoid leaks from a poor seal. It has to be an area as flat as possible.

What your surgeon said about the body getting used to the heavy-duty, strongest meds building resistance is true for some folks... but always save surgery for the last option. That's why I was surprised only 5 years and you're going under the knife.

Better check on that skinny one going back to the gym 1 or 2 months after an ileostomy.

Can't imagine that.

With a colostomy, yes, possibly... but ileostomy?

People saying stuff that makes you go... hmmm?🤔

Tanika, welcome to the site, and I totally understand your fears. I was there 2 years ago when none of the meds were working for me after 7 years of UC. The first couple of months, I had some issues with pouching and had to have a revision on my stoma 7 months after surgery, but today, 25 months in, I am thrilled I had it done. I can travel again; my wife and I love doing wildlife photography, and we do it every morning and evening in the late fall, winter, and spring, and have spent lots of time going to different wildlife refuges around the Midwest. I can mow my yard with a push mower, do normal things around the house, and have no problem. I do have a hernia I am getting fixed next month; I believe it was caused by changing a tire on my truck. I should have had someone else do it for me, but that was my fault. All in all, life is good, and I would not have a reversal even if I could. I hope your fear goes away soon; it is not something I ever thought would happen to me, but my life is much better without my colon than having UC.

Hi Tanika, Welcome to our group. You've found a great place for friendship and support, and I'm sure it will prove to be a lifeline for you. It sure saved me when I was a newbie. You have already received such good advice; I don't need to repeat what's been said. I will tell you that I have an ileostomy and do everything I did prior to my surgery. I am very active and still work out, although I've modified my workout to prevent hernias. I swim regularly. I also have a social life, and I don't let my ostomy control it. I eat anything and everything, although, as others have said, everyone is different, and experimentation is key. You can lead a full and active life without pain. My ostomy was not a choice. It was an emergency surgery and saved my life. Definitely better than the alternative. You are very young and have a choice, so you may want to delay the decision and look at other options for medication. On the other hand, when it comes time to make the decision, you don't need to fear that an ostomy will make things worse. You can have excellent quality of life with an ostomy.

Terry

Hello Tanika. I am 55 and had to have an ileostomy put in place 4 years ago, also near the end of October. It will be an adjustment, but that adjustment is different for everyone and is a personal experience. There are many who have gone through this and are here to help, listen, and offer advice. After healing, you can still be active. After healing, I have been back in the pool, back on my horse, back to work, and driving and traveling. Also, after healing, you can still eat what you ate before; just chew a lot before swallowing and stay hydrated. However, anything you eat you will see quite clearly afterward, and foods with colors beget the same color later. You should also be stomach pain-free after surgery. Hope this helps.