Considering Surgery for UC/Crohn's: Need Advice!

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1101
tkenton89
Jun 07, 2022 4:26 am

I'm a 32-year-old newly married man. I have had UC/Crohn's since I was 10. 8 years ago, I developed colon cancer. They caught it super early, thankfully, and did a subtotal colectomy.

Since then, I've been mostly okay. Much better than before cancer. They took all my large colon and attached my small bowel to my rectum. I have had a couple of abscesses, the last of which has turned into a fistula that I've tried to heal for the last 2 years with meds alone. The fistula is painful and drains regularly. The worst part is all the drugs I need to take just to barely manage it. Cipro 2x a day, Flagyl 2x a day, Mesalamine 3 a day, Budesonide (steroid) 3 pills a day, and a Stelara injection every month, which pretty much wipes me out for a week.

I can feel myself start to give up hope. The constant need for painkillers is leading me down a road I'm sure you can imagine as well.

I'm really struggling if I should pull the trigger or not, if I'm sick enough to warrant the ostomy. I know I am tired of the drugs and pain and constant doctors and prescriptions. My wife is fully supportive of the surgery, encouraging almost. I worry mostly about my self-image. I've seen on here you guys get wraps which conceal it all. That seems nice.

So, this would definitely be elective, just needing some advice please!

AlexT
Jun 07, 2022 6:05 am

No one on here can make that decision for you, that's for you and your family to decide. I know I wouldn't want to be on medication and be in pain constantly. Good luck on whatever you decide.

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Bill
Jun 07, 2022 8:19 am

As AlexT says -the decision should be yours.

I went for years in acute/constant pain and discomforting incontinence, until eventually I 'gave up' and elected for a stoma.

It's not something I wanted, but it's a damned site better than what I had and I rarely regret the move.  Several times It has ben suggested that I go for a reversal, But I have declined on the grounds that the life I have now is so much better than the life I had before (reversal would probably mean a revision of previous problems).

If you have the support of your wife, this will most likely help with self-image issues. I believe that Physical image is not the thing which cements true and lasting relationships, it is the way we think and behave towards one another that counts so much more. 

Personally, I have some 'AIMS' in life  which guide my behaviour and decision making. You may notice that none of them refer to physical image. 

Best wishes

Bill

AIMS.
 

Sometimes caring and compassion

shows in someone’s inner passion,

which can evolve from having aims

that a person proudly claims. 

When a person’s truly kind,

this partly is a state of mind,

which often has a theory base

guiding their practice interface.

It’s good to have your aims right there

so you can show you really care,

and you can point to each facet

as a caring, sharing asset.

The aims we list should show we may

be kind to people everyday, 

then,  with our smiles and personal charm,

make sure that they don’t come to harm.

Some time ago I made a list

of aims, so people got the gist

of what my caring was about 

so, they would never be without. 

My list of aims was based upon 

the kindness, friendliness and bond

that’s found between people and pets,

for that’s the best that friendship gets. 

And once I sowed that seed in mind,

it grew into me being kind,

for that’s the way my pets taught me 

and that’s the way I want to be.

The thing about the aims I’ve got,

they have no devious, hidden plot,

so, bullies feel that I will not 

align with them, as a tosspot.  

                                      Be Withers 2020

AIMS in RELATIONSHIPS.  

In relationships I proclaim. 

That it is good to have an aim. 

So think of how much better then 

If I increased my aims to ten.

My first aim is to be right there.

If you’re not there how can you care.

To be ‘there’ - for someone.

Has got to be, aim number one. 

To be consistent is number two.

Then people can rely on you.

They’ll know you will not let them down.

And they’ll know you’ll be around.

Next, I’ll try to persevere.

To be honest, genuine and sincere.

So honesty and sincerity.

Will be a top priority.

Non-judgemental’s number four.

For no one is without a flaw.

Judgements bring things to a close

So this is what I would oppose.

Listening is a lovely thing.

And true friendships it can bring.

Listening’s something that’s still free.

My listening comes with empathy.

What would I choose for number six

For good relationships to fix.

What has potentiality.

Is confidentiality.

In number seven I justify

My belief in D.I.Y.

To ‘my’ will no one will cower.

I try to enable and empower.

Unconditional positive regard.

Can sometimes be a little hard.

So I will try to show respect. 

And relationships perfect.

It will come as no surprise. 

My last aim tries to emphasise.

That I will focus on these aims.

And principles from which they came.

                                                B. Withers 2007

(This AIMS list is from inverse analysis book 1 )

  

Meadow Snow
Jun 07, 2022 10:55 am

I know if it was me I'd probably want the surgery to get away from all the pain and all the meds, but to echo what Alex and Bill already said, only you can make the decision. It's your body and only you know what's the best thing to do. Write down all the pros and cons of each option, and talk it over with your partner. If you do decide to go for it, we're all here for you, we've all been there. Take care xx

SallyK
Jun 07, 2022 11:09 am

Like Meadow says, we are all here for you.

 
How to Manage Emotions with LeeAnne Hayden | Hollister
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Abefroman1969
Jun 07, 2022 11:22 am

It's an echo chamber in here! I'll add my own echo, this is a deeply personal choice and can only be made by you and your doctor. As a man who has dealt with complex fistulizing Crohn's for 30 plus years, I know exactly what you are going through and even had the same procedure where my large intestine was mostly removed and I was reconnected by small bowel. That worked for about a decade, then the fistulas and abscesses got so bad I had 3 SBOs in a year. I wouldn't wish that pain even on those I think deserve a little hurt in their lives.

This is a decision that only you can make along with guidance by your doctor and surgeon. Make sure you look and think hard about all aspects. The mental side of it was the most difficult for me. I didn't want the surgery, but my body and my surgeon made that decision for me. I'm still dealing with fistulas and abscesses, so it's not a cure-all for those symptoms.

I fully understand the drug issues with Flagyl and pain medication, and if you feel you are losing control, please seek help before control is lost.

One question, have they tried or suggested a seton for your fistula?

The mental side and body image self-perception is a very difficult thing to overcome, and it sounds like that's what you are struggling with. We are all here to help you through it, and I'm glad you found us.

As others have said, and I'll repeat that echo, this is a deeply personal choice that only you can make.

Best,

Abe

colenemcclard
Jun 07, 2022 11:36 am

Hi and welcome,

It is such a personal decision. I agree with all the above though. By the time I got mine, I was ready and let me say, it was freeing! It gave me my life back.

We all wish you the best and sending prayers and positive thoughts your way!

Colene

Two bags
Jun 07, 2022 11:46 am

Well, if I had the choice of pain or a stoma, a stoma would give you better quality of life. I had to make a decision to have two stomas or die. Obviously, I'm still here, 14 years after my surgery. Life is good, even with two bags. So I guess we all have a choice. I chose life over death. But to choose pain or stoma, well, that's up to you.

ron in mich
Jun 07, 2022 12:52 pm

Hi T, it sounds a lot like I was 38 years ago tired of all the meds and doctor visits, the scopes, and not being able to live an everyday life. But when I heard about the surgery, it scared the hell out of me. I had no idea what an ostomy was and didn't like the idea of wearing a pouch 24-7 holding my poo. But after my wife and I talked it over, we decided that it would be better than being sick all the time. If you decide to have the surgery, just make sure the surgeon gives you a stoma that sticks out at least an inch for better drainage into the pouch. Also, stoma placement is important as you don't want it in a crease as that will cause leaks. Good luck.

Jackie22
Jun 08, 2022 8:58 pm

I feel for your suffering. Post colostomy operation (it was emergency surgery for diverticulitis perforation) I suffered a great deal of infection and drains. To that end, I was prescribed heavy doses of antibiotics three times a day. It was for a three-week duration, and I truly suffered and disliked taking the antibiotics. I had a bitter, foul taste in my mouth. I cannot imagine having to live that way for the rest of my life. I also understand not wanting to become an ostomate for the rest of your life. I hope people are reaching out to you with helpful advice with more experience than me. I am temporarily living with an ostomy bag, and it is not so bad... Is the surgery you are contemplating reversible if you change your mind? If so, why not try it? It appears as though you have reached a place where you want to have less day-to-day pain and suffering. You deserve to live your life more joyfully. Lucky for you that your wife supports you. Like everyone states, you are the one to decide. I understand when you are at crossroads, it's nice to have feedback. Good luck, okay? I wish you a life of peaceful ease... after enduring so much suffering.

StPetie
Jun 08, 2022 11:28 pm

Hi. I'm sorry to hear about your situation. It makes me feel pretty fortunate. As everyone says, it's your call. But I want to back up Jackie's statement that the bag is not too bad. And I'm a notoriously weak stomached guy. When I found out I had an ostomy in my future, all I could think about was living with that bag and how horrible it was going to be. Turns out it's not nearly as bad as I anticipated, so don't let your mind blow the bag out of proportion. Good luck. And best wishes for a good outcome.

SharkFan
Jun 11, 2022 6:28 am

I dealt with UC for nearly 20 years. As I was running out of options, a local ballplayer, Jake Diekman, came out as an Ostomate. He makes ostomy awareness in every city he plays. I saw him throwing 100mph fastballs wearing a bag. When my doc said I was running out of options, I said "sign me up for surgery". I had the surgery over two years ago and never regretted a day. I can eat what I want, when I want (might be getting up in the middle of the night if I eat too late). I realize I am extremely fortunate. Many others have not had such luck. Looking back, I wish I had done it years earlier. With your age and a supportive wife, the best days are ahead. I've met and become friends with two others who were looking for advice. They had a few complications after surgery but are more than happy for how life is now. Check out "Lets talk IBD" on YouTube. It's a channel about a young lady who was making the decision for surgery, had it, and how to live with it. Very inspiring.

I've worn a bag since I returned to work two months after surgery. I never had washboard abs. A baggy shirt and a support belt cover it up the slight bulge. One's first impression is that people will notice the bulge. I was surprised how few people look at your waist. No one outside of my family knows what's under the shirt. The occasional "belly fart" might happen. I just find myself sitting with my hands folded across my belt when I finish a meal. A small price to pay for the freedom I now have.

Check your doctors' history, this is nothing for a general surgeon. If you have a good, experienced doc, I say "Go for It".

Best of health to you,

SharkFan

AlexT
Jun 11, 2022 7:27 am
Reply to SharkFan

I just wear a Stealth Belt with no shirt at the lake and nobody pays any attention to it. Maybe they're too busy admiring my old fat belly. &zwj