So that call happened...

Exactly that isn't ‘help' or ‘advice'; it's just a condescending statement aimed at people who already have anxiety or are nervous about things in their ostomy journey and has no place in this community.

If he wants to help, yes, tell us how he's dealt with things, but offer some form of advice for those that can't ‘just deal with it and move on.'

Sorry if it seems I've snapped back too harshly, but he has no idea what I've been through other than my health battles with UC. I've endured things that, in no exaggeration, would have finished those with the ‘deal with it and move on' attitude.

I'm a very strong person mentally; I've had to be, but it doesn't mean I don't worry about things, even things I can't control, and there's nothing wrong with that at all. As I've stated in other threads, a big risk with having the rectal stump removed and this surgery is ED, and at 38, that is a worry. There's no two ways about it. I'm single; I have been for about 3 years. I've not had the support most have had when I fell very ill last year due to the UC. I'm finally getting back to having a normal life and now faced with the prospect that I might lose sexual function before I even hit 40. That isn't something I can just deal with and move on. Maybe there is treatment that could help if the worst happens, but it's possible that it's more surgery or medication for the rest of my life. You think that instills me with confidence to go out and meet potentially a long-term partner?

And before anyone says I'm only thinking about sex, I'm not. I've been without for the last 6 years, but I'd kind of like the option if and when the opportunity arises. But that's besides my point anyway.

Yes, first and foremost is my health, and that is a priority, but I can't only think of the short term. Maybe anything else I will deal with and move on, but I can't help but think longer term and how to enjoy some quality of life when I do get my health back to nearest 💯% as I can.

Sorry Maried, you're wrong. His words about needing a teddy bear are no less than condescending and downright rude.

 

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Oh my lord, as hard as I'm sure that was to put down in words and feel all over again, thanks for sharing. This puts everything in perspective physically and emotionally. Nothing is ever as simple as it looks, and no one can ever completely know what someone else is going through. Empathy and love are universal and free, though. 🫂

Hey Mr. B/Thomas, the waiting is the hardest part (sorry, just quoting Tom Petty). It helps to alleviate anxiety just to get all of your concerns out, and there are enough people on here who are capable of hearing you where you are, so remember that. I had a situation on here that left me feeling very vulnerable. Luckily, I have a therapist friend who listened when I unloaded those feelings and validated them. Being heard is everything, and everyone deserves to be heard and supported on here.

Avoiding Ostomy Bag Leaking | Managing Ostomy Leaks with LeeAnne Hayden

Thank you... I appreciate it a lot... I just wanted to let people know who cares if you worry or cry... just don't give up even in the darkest of times... everyone has a breaking point.

Chronic illness involves some of us who have I.B.D.

It doesn't go away even if your diseased organ is removed.

Now some may disagree on that.

If you are lucky not to have manifestations of other illnesses, afterwards, then yes indeed you are a lucky person. A spirited person. A happy human. Someone who can put surgery on their "to do" list and not give it a second thought.

Good for you.

But having IBD will cause you to worry. For some of us, a Barbie or Ken butt didn't fix us, and issues followed. These issues can come from long-term use of medications, emotional, physically aging, etc.

The mind is incredibly powerful—a helpful source. And how it's set can make or break you. Fact.

*IBD—Inflammatory Bowel Disease. Crohn's/Colitis

Alex always urges people to get on with it, a good idea in itself. Sometimes that strategy might come across as rude, but it is not meant to be that way. Hey! Maybe he is just being brave and gets the shivers at the mention of surgery just like the rest of us. Best wishes.

Thanks. No, I don't get the shivers from having or the mention of having surgery. The only thing that bugs me is getting a needle for a blood draw or an IV because I've had so many that it usually means I get poked 3+ times before they get one to work. I never should have had my chemotherapy infusions through an IV, and I should have used a port, as I think those infusions messed up my veins in my arms. Oh well, lesson learned, no need to dwell on it. 🌞

I never had great veins to start with. I had my chemo through a port. But I had so many IVs in the hospital after my surgery that now, even a blood draw is problematic. The last time a tech tried to draw my blood, she ended up calling a nurse to take the blood through my port.

I take it that from what's been said to me that damaged veins will basically "go into hiding."

So chemo certainly messed up your veins. It seems to be incredibly easy to do.

My veins go into hiding now too - I used to have great ones before the emergency surgery, then they couldn't even take straight nutrition in the hospital. They ended up giving me a PICC line for that. I did chemo through a port (which I'm still fighting with the insurance about covering, over a year later!) and when I just had my revision surgery, the veins went into hiding and they had to use my port for the surgery. The nurses had to get permission from the anesthesiologist, but luckily they gave it.

Yep, yep. They were actually using my port in the hospital, but I had so many IVs that they needed a second line.

And I just want to say that it's ridiculous that your insurance is trying not to pay for the port. You had chemo... a port is normal, even if not everyone has them. I've been super grateful to have mine.

I did the same, used my veins for chemo instead of a port. And I have trouble with IVs. My last hospital vacation, I had IVs in both arms... they both leaked. After 2 weeks, my bed was soaked on both sides. Nurses took a look, said nothing could be done. But... they called in a young nurse the next day who was an expert with difficult IV cases. She poked, prodded, and managed to get both arms leak-free. I was a happy camper.

Picc line or central venous catheter (CVC) is used for TPN. A regular peripheral IV line is typically not used for this.

Next time, insist they get someone who can use the ultrasound device for finding veins. The hospitals I've been in didn't have a lot of these devices and only a few people who could use them. But it is far preferable. I've always had good IVs when they were started this way.

I wasn't smart enough to insist during my last hospital stay.

Great tip. Nothing worse than a poorly installed IV.

I, for one, truly appreciate Alex's perspective. On more than one occasion, his point of view has given me a lift out of the places I was stuck in, generally a pigsty of anger and frustration. It helps that I typically don't rely on teddy bears to cope and do not need sugarcoating. Give me straightforward advice and even sarcastic answers any day!

Thank you.

While we do need a sympathetic ear occasionally, we also need to be reminded from time to time to stop negative thoughts and learn to live with, and embrace, life with an ostomy.

After I was discharged from the hospital, I was having weekly pity parties. Teary-eyed rants about this damn thing sticking out of my abdomen. My wife finally had enough. Told me to stop the F-ing sissy-assed "woe is me" crap. And you know... I have never shed a tear since.

Your wife is a smart lady. 👍

Can everyone just agree to disagree? This back and forth about how you should deal with things is getting point-blank childish. Nobody's brains are wired the same and have the skills some of us may have to deal with it right away, and not everyone has friends and family that support them. It's like telling people with depression/bipolar, etc., that it's all in your head; get over it. 😡🤬

Everyone has the right to their opinion, but no one has the right to tell people how to deal with the way they cope during hard times other than to give words of encouragement to push past it!

Thank you. That was my original point.

Mine too. Maybe blunt responses work on the odd few people; having some concerns or anxiety over something isn't irrational or wrong. If someone posts something about a worry they have, answer it, but not just with blunt comments about just dealing with it. You don't know the person well enough to know if just saying "suck it up" is the right way.

If I wanted blunt comments, I'd go talk to the ex-wife…. Sure, she'd have something to be blunt about.

But I do have a genuine worry that after this surgery, I will have problems with sexual function, and at 38 years old, that's not something I can just suck it up and deal with.

I'm not the most confident person with girls anyway, on top of the fact I've been out of the dating scene for about 12 years. I now also have to weed out girls that see the bag as a no-go for a relationship (sad, but it's true).

Looking for proper advice from men that have had this surgery and what they experienced afterward?

It's totally understandable everything you are saying, and trust me, women have the same issues with men. xx You will find the right person, and when you do, they will appreciate you for you. x As for the way people react to comments, everyone deals and responds differently. However, I think with everything we've all gone through, some of us do appreciate that kindness. x It goes a long way. x But everyone is different, of course, and I respect that. xx

It's very hard to determine intention on here when we don't have the benefit of body language, voice inflection, etc. Being truthful and honest can be helpful as long as it's delivered in a non-threatening way. We're like a family here, and no two people can play the same role, but let's assume we're all here ultimately to help each other. My brother teased the crap out of me growing up, but I also knew he'd hurt anyone who messed with his little sister. I guess my friend who gave me a book on gratitude meant well, too, even though I almost threw it at his head!

Before surgery, explain to the surgeon your concerns about post-surgical sexual dysfunction. Tell them you want to retain as much erection and ejaculation function as possible, if possible. Ask if there are nerve-identifying/sparing procedures that can be performed during surgery to protect those nerves from damage.

Ask about post-surgical pelvic floor issues/damage. The pelvic floor is a literal core to the rest of your body mechanics. Pelvic pain and sexual dysfunction after the Barbie butt is generally caused either by scar tissue and/or by the shifting of pelvic organs after the rectum is removed. There is also the possibility of urinary difficulty.

My advice: Since you're 38, carefully consider why you're having this surgery. Can it be postponed for many years? Are you doing it now because there is an opening at the hospital to do it? You don't want to be rushed into this.

Do you want more children in the future? If you do, or are unsure, you should "bank" sperm before this surgery, just in case ejaculation is not possible post-surgery.

If you currently have normal sexual function, that function will be impacted by this surgery. The only variable is how much.

Think about what you could potentially gain from this surgery versus bodily functions you could possibly lose or have diminished.

Great questions, Beachboy!

Must he have surgery now? I have had Crohn's disease and a colostomy for over 30 years. I have never had Barbie surgery because I know the removal of my anus does not stop or control the disease. The only thing that has helped is using Humira.

Good points. We are all different and require possibly different treatments. I was just reading about the differences between Crohn's and Ulcerative Colitis.

So much to learn.

Thank you, beachboy, that's very helpful.

The situation for me is yes, I need this surgery. My UC was literally destroying me down there, and the only reason they didn't do the Ken bum surgery at the same time as taking the large colon out was because I was still on steroid medication, and they didn't think it would heal well.

I have normal function sexually at the moment. I'm guessing what I want to know is will I have to rely on Viagra or a pump after this surgery? I guess Viagra wouldn't be too bad of a situation, but I guess that relies on some function for it to be effective.

Ejaculation in itself isn't too important, and I don't expect to be having any more kids. Just kind of hoping if and when I do meet someone, I don't have nerves about ‘functioning' on the day.

You won't know how your body will respond until you get to that point. I doubt any doctor can say for certain one way or another.