Big decision - ileostomy

[Archives1]

A little background: I was diagnosed with ulcerative colitis in 1988, and with primary sclerosing cholangitis (chronic bile duct inflammation) in 2001. My colitis has been pretty quiet for most of the past 20 years, but the first dozen or so years were almost nonstop bloody diarrhea. PSC is a progressive disease, so since my first real symptoms in 2010 or it's slowly gotten worse. My liver is at the point of just starting to get cirrhotic, and I anticipate needing a transplant in the next few years.

UC with PSC carries a very high risk for both liver and colon cancer. I get an MRI/MRCP yearly to look for liver cancer, and I get a colonoscopy every year to look for colon cancer. I'm 50, but by now I've had somewhere around 20 colonoscopies.

My annual colonoscopy in April came back with low grade dysplasia in one biopsy from my transverse colon. My doctor suggested a 6-month recheck, and my September colonoscopy results just came back with no dysplasia except for one biopsy in my ascending colon that was indeterminate for dysplasia because of active inflammation.

My doctor recommended continuing colonoscopies twice a year, with the next one on June. I've read a lot of the medical literature, though, and it seems that there is some disagreement among doctors about whether to perform a proctocolectomy after a single result of our grade dysplasia. It starts that there's a 30% or so chance that they'll find high grade dysplasia or cancer on examination if they do take my colon out, even if they only found one spot of low grade dysplasia on colonoscopy. But other doctors refund just watching and waiting.

I'm uncomfortable with just watching and waiting, given the odds that cancer is already present. I suspect that it I push my doctor to remove my colon, he'll probably be willing. I'm likely not a great candidate for a J-pouch, and the idea of having to have 4+ bowel movements a day (and the high probability of at least some anal incontinence) sounds just like being back in the bad old days of my colitis (which was 10-20+ BMs a day for years). So if I have my colon removed, they'll probably do a permanent ileostomy and remove my rectum and anus in the bargain.

I'm also not entirely comfortable asking for that. It's a huge body change, requiring an ileostomy bag for the rest of my life.

But then again, it removes any chance that I'll get colon cancer, and it eliminates having to get a colonoscopy every year. It also makes sure that up never have another UC flare-up.

So if this leaves me feeling torn. I'd actually how'd that they're find more dysplasia on my last colonoscopy so that the party forward was obvious. Instead, it just muddied the waters with finding indeterminate dysplasia.

If I get an ileostomy, I've already brought up to my urologist the idea of getting a urinary diversion with urostomy, which would possibly eliminate my interstitial cystitis and my urinary incontinence. She want terribly receptive to the idea, but I could probably convince her. Having two bags isn't much side than having one, and it would mean that I wouldn't be diapers anymore. She pointed out that even bladder removal doesn't guarantee relieving bladder pain, though - IC is notorious for still causing pain even after the bladder is removed. And it's very major surgery, mostly to eliminate needing diapers.

I don't know what to do. What I really want is a clear path forward, but what I have is big choices that will affect the rest of my life with no clear best choice.

 

[Archives1]

Just me; but I think I would rather wear diapers all the time rather than having to empty out my ileostomy and/or colostomy bag. Just me personally.Hope you make the best choice for you and pray everything works out well for you.

 

[Archives1]

Before doing anything radical I’d consider seeing a natiopathic doctor. There are some quacks under that umbrella but there are some really good ones. I’m having great luck with my psoriasis which like UC can be related to auto immune reactions, with her protocol.

She did a ton of tests that my regular doc never ordered. In the process we found I have a candida overgrowth in my gut and also another intestinal infection. I’m on a couple prescriptions and a bunch of supplements fir that now and seeing good results. She also referred me to a dietitian who did blood work to test for food alargies. There were a few that came up that I’ve cut out. I’m only 2 weeks in but I’m seeing decent results.

 

[Archives1]

Hi Itapilot,
Wow, you’ve had allot going on for sure. I guess you would just have to weight the cost vs. benefit for your unique situation and life. Being able to empty a bag is great for being quick and easy, clean and sanitary. And you can swap them out pretty quick when needed. Not to mention it’s allot cooler and less skin breakdown and diaper rash when it’s warm out. But then you have to factor in cost too for supplies vs buying a case or two of diapers each month.
I’m used to the different underwear I have to wear, but I also have times when doing a belly bag or leg bag work better. Just depends what’s going on and my fluid intake for the day.

Find out what the actual recurring costs and copays will be and weight them against what you are currently paying. You may be surprised and should consider everything before making the decision.

Hope you have a nice weekend,
Jim

 

[Archives1]

@ltapilot you certainly have some big decisions to make. Do you know anyone who has had to make these decisions already? If not, maybe you could ask if some previous patients are willing to share experiences with you. Jim makes some good suggestions of things to consider. I can't think of anything else right now, but whatever decision you reach, I hope that it all goes well, cheers Phil

 

[Archives1]

Hi @ltapilot, That is a lot to think about and I'm afraid I don't have any definite answers that could help you make a really informed decision right now. As you put it there is no clear best choice right at this point. Forestalling or even completely eliminating a cancer risk is a very good reason to consider it. I do like @jrpoorman's suggestion to find out about all of the costs and copays over time versus what you are paying now. When you have this ileostomy for X number of years, what do you think your costs would be? That's looking at the practical side of things and if it were me I would consider that before going to the final decision stage.
It is a major lifestyle change for sure. And I can relate to the ileostomy aspect. I'll make a very long and complicated story as simple as I can. I was engaged to a woman who had an ileostomy as a result of ulcerative colitis. As the doctors tried to diagnose what was going on with her, they tried an experimental medicine which ultimately deafened her. She had the ileostomy in her early 20s and had it for around 20 years by the time I knew her. She told me she could eat most things without the pain she endured before surgery. So that was a good thing. She had her bag care routine down pat. She was married to someone before. She told me that her husband "didn't care" about the ostomy one way or the other. It made no difference to him. And it made no difference to me. I liked this lady for who she was and thought she was a wonderful and witty companion. Even though she was deaf and could read lips, she wanted to work in vocational rehab and I supported all of that. Had she not have had the ostomy she said she may very well have developed cancer over time. I'm sure I'm simplifying things here but in case you're wondering why I didn't marry her. She found out her husband wanted a divorce and said he would handle it. Apparently he never did and she found out. But she was completely unable to tell me about it. As a reporter I became suspicious and called the courthouse where they last lived as a couple. I was told no divorce had ever been filed. I was the last one to know that. So the ileostomy had nothing to do with why we didn't get married.
So ltapilot I hope that begins to help sort out things for you. Of course I'm sure you'll want to come here some more and continue this. But since you're talking about ileostomy I just had to tell of my experiences.

 

[Archives1]

@ltapilot I am so sorry you’re faced with these massive, complex decisions. Sometimes with medical difficulties we encounter situations that truly amount to the idiom, “Pick your poison.”

If your choices were just between using bags or wearing diapers, I think diapers are by far the better choice. But your choices aren’t just about diapers vs. bags; pain, fecal incontinence, and cancer are at stake.

I myself had considered pursuing a urostomy for convenience, until a female friend of mine had one last year. The surgery and recovery were hell on her and her family. She absolutely hates the bag. She frequently gets infections at the site of the hole. She’s barely been able to get off the couch in over a year, and she’s normally a very accomplished, high-energy Ph.D., social organizer, and mother in NYC. So she’s devastated by how her activity level has plummeted since she got the urostomy procedure. Her husband and children are overwhelmed and depleted.

While I haven’t had any of your issues, I have had two forms of cancer: cervical and melanoma. They occurred simultaneously, three years ago. I had five surgeries over 12 months in both regions (elbow and cervix) before the cancer was successfully all cut out. Fortunately I didn’t have to have any muscle or bone removed. Even more lucky, I didn’t have to have chemo nor radiation. Surgical removal is a much more successful method of treating cancer than is radiation or chemo. Most people are afraid of surgery. I have no such fears. I’ve heard that some el cheapo insurance companies including Medicaid, don’t pay for surgery because it costs more than chemo and/or radiation. That’s offensive; every cancer patient should have every opportunity for treatment to choose from.

The final surgery on my elbow resulted in a 5”x8” hole that went down to my tendons. I watched (and smelled) the whole thing. The cauterization to seal the wound is the worst part. I now have a massive, jagged scar that goes all the way around my elbow. Strangers often ask me what happened. One lady even stopped me in the middle of a crosswalk to ask who stabbed me; pretty cute. She passionately offered, “I’ll f***ing kill him!” Overall, the elbow surgery was an easy decision to undergo.

The cervical cancer removal presented a more challenging decision. My gynecologist said I could just wait until I’m 50-55 and go through menopause, which supposedly changes the chemistry in the region enough that it can kill cancer cells - wash things out, so to speak. I was 41 at the time and felt incredibly uncomfortable with the idea of walking around with cancer until I was 50-55!!!!!!

We had tried four unsuccessful, conservative surgeries before I was faced with the final choice of having a partial hysterectomy (or waiting until menopause). “Hysterectomy” is a stupid, inadequate, and vague word to describe the removal of multiple parts of the female anatomy. No two hysterectomies are identical. Sometimes they remove part of the bladder. “Hysterectomy” is an ancient, offensive, misogynistic term that literally means “removal of hysteria.”

Instead what actually happened in my hysterectomy was I had to have the top half of my vagina, my cervix, and the lower part of my uterus cut out.

Everyone thinks the clitoris is the culmination of the female sexual pleasure zones. In reality, the clitoris are the branches/leaves, the vagina is the tree trunk, and the cervix is the root system - the ultimate source - of female sexual pleasure. The internal vaginal g-spot is basically the cervix. The cervix sends the nerve messages to the vagina to create lubrication and to flex during intercourse. The cervix generates a special protein burst for sperm to help them survive their journey into the uterus. It’s typically sealed completely tight like an anus, but during sexual intercourse it opens a bit to admit sperm into the uterus. Then once pregnant, the cervix stays tightly sealed to keep the baby inside the uterus until it’s time for birthing labor.

So I had to decide if I wanted to lose all of that - all sexual pleasure - and the ability to carry a child (though I was too old to do so at that point) - or, keep living with cancer! Some choice, right?!!!! Like I said, “pick your poison” sometimes truly presents itself in our lives.

I went with the hysterectomy. It successfully eliminated all the cancer lesions and tumors. The pathology results of the tissues removed revealed that my cancer cells were “severe; advanced; aggressive.” My gynecologist told me I was very lucky the cancer hadn’t spread farther and that I’d made the best decision based on my gut instinct, to have the hysterectomy.

I feel very relieved that the cancers have been removed. I’m 2.5 years cancer-free now, for both the cervical and melanoma cancers. I’ll always be scared about cancer though, because once you’ve had one kind of cancer, you have a 50/50 chance that you’ll have another type of cancer at some point in the future.

The physical recovery from the hysterectomy was four months of hell. I’ll spare you the gory details. But the emotional recovery was destructive and disastrous. The hormonal chemical changes sunk me into the deepest, most devastating depression of my life. I gained 80 lbs. in three months, with zero change in my eating habits. I actually ate quite a bit less, but gained all that weight anyway. My endocrinologist is still trying to figure out how to correct the chemical imbalances.

As if I wasn’t already destined to be single because of my bedwetting and insecurities, now I’m permanently devoid of the sexual pleasure part of my life, and, I’m a lardass to boot! I don’t even know if a penis can fit in my vagina any more. I reallllllllllly wish this had happened later in my life when I was preferably already married!

I’ve had to completely alter my overall life plans since the hysterectomy, to adapt to a life without dating or without a partner. You can’t begin to imagine the profound, suffocating loneliness engendered by having had physical components of one’s sexual organs permanently annihilated.

I now have to pay for all of my future expenses, like the cost of a home and a car, as a single female (living in the state with largest gender wage gap in the nation: 38%!!!!). Men can’t fully appreciate how challenging that reality is for women, financially.

I face a future of eating at restaurants alone, completing every household chore alone instead of being able to split the work with a partner, backpacking alone (risky), making meals for only one, and wasting money on food that generally isn’t sold to accommodate singles - rather, families. Most heartbreaking of all, I have to live with not having someone to cuddle me and be my safe harbor in this stormy world.

Adapting to this reality requires slow-going, conscientious effort to be able to view my future destiny in a positive light. My abode will remain immaculate and tidy. I can have a pet without asking for a partner’s agreement. I can spontaneously go to the movies of my own volition and nobody else has to agree to go with me. But I’m not even close to sold on the positives; the negatives are still conquering my soul.

I don’t smile much any more. My creative impulses have vanished when before the hysterectomy, I could barely contain my exuberant creativity. This is very typical for women who’ve lost their sex organs - the loss of creativity. Pretty weird. Divorce, depression, and a life of solitude lead to a shorter life expectancy for women who’ve had a hysterectomy.

HOWEVER!!!!!!!!!! I AM CERTAIN I MADE THE BEST CHOICE TO BECOME CANCER-FREE, DESPITE THE POST-OP AFTERMATH! I would have been overcome with consuming, crippling cancer anxiety had I not had the hysterectomy. Hopefully I can learn to appreciate a partner-free life. I would not have been able to feel safe living with known cancer in my body.

So, there is my story of a true “pick your poison” decision I recently endured. I think you, like me, are not comfortable living with cancer in your body. Your post-op recovery will be hell and you’ll undergo major life changes and habits as a result, as you know. But that nagging fear of cancer will be gone from your mind, and *that*, feels really awesome. I can also appreciate and relate to your desire for the relief a bag(s) may provide.

I hope my story may help you make your decision. If your urologist won’t do the procedure you want, simply see a different urologist, and even then another one if necessary, until you get the result you desire and deserve.

Take care and keep us posted! I wish you the best!

 

[Archives1]

P.S. I can’t believe how much personal, private information I just shared. I‘ve only told three people about the details of my hysterectomy before.

 

[Archives1]

Snow... I was quite moved by your story. I could feel your loneliness coming out thru your words. We actually have a woman like that in our social circle, but she is in that position because her husband died 10 years ago. I feel for her too, but she doesn't want to find another life-mate because she seems to think that would somehow be "cheating" on her dead husband.

In your case, I think you should seek a relationship, but be honest up-front and tell that person of your physical limitations. I think you'd be surprised of the number of men who would enjoy a relationship mainly for the companionship without the sexual aspect. Let me tell you a secret... Many middle age men are not having sex anymore. Where I work, my "team" of co-workers are all guys in their 50's and early 60's, all married. We often hang around socially, and talk. We don't sit around and openly chat about our sex lives, but occasionally something comes up in conversation about getting older and the differences from our youth. From what is said, I know just about all of them are not sexually active anymore.

In my case, in addition to bedwetting and urge incontinence, I've had E.D. for a few years now. At my last physical, after talking about my incontinence issues, my doctor asked if my E.D. condition had worsened and if I wanted to try Viagra. I kind of laughed, and said "What would I do with that???" I then explained to him that since my wife's hysterectomy several years ago, she has ZERO interest in sex. So we're actually a pretty good match at this point in our life. But other than no longer being horny 20-somethings, we're doing pretty good.

And don't let your bedwetting hold you back either. For many people, it just won't matter. My wife could care less that I'm diapered everynight, as long as my diaper doesn't leak and get her side of the bed wet!

 

[Archives1]

I’m facing a similar situation, though not as drastic. I’ve made the decision to get a suprapubic catheter. My doctor is concerned about retention because I have a paralyzed neurogenic bladder and I want to get the hell out of diapers. Everything is covered by my health insurance (I have Medicaid and Medicare) and I pray that I don’t get infections. That’s my main concern. It’s reversible which is the Main reason I’m going for it.

 

[Archives1]

Snow, I too was really affected by your story. It took a lot of courage and dredging up painful memories to tell it. I know I have said this before and it bears repeating. So here goes....You have so much to offer that it would be a waste to discard opportunities for any future relationships. Accidents and surgery and cancer may have left you bereft of some things physically but I know I've already told you have a bright, wonderful mind and a magnetic personality. That's the "real" you! It's still there! Plus the fact you are a great friend to all of us here and I'm sure also to people I have never even heard of. So please don't deny that to somebody you may meet further down the pike. Like Mike said above, not all guys who get to the middle-age point are interested in a sexual relationship. We want something that is deeper and more lasting, like great companionship and genuine love. I think that's still in you! And if you talk frankly to someone you may be pleasantly surprised by a positive response. Please give it a try. I'm sure there are a lot of guys out there who would love to take you to dinner, or on a hike or just to cuddle with and keep the big old world at bay! Please allow yourself that possibility. You don't have to accept a partner-free lifestyle. I think there's a lot left in you yet! And please don't write yourself off as being partner-free for the duration. Life is full of surprises and I'm rooting for you to meet up with a really good one!
And the incontinence. A lot of guys, myself included, think it's no big deal. So what? Who's perfect? You wouldn't be able to stand them if they were! You saw my post right here on this thread about the woman I was engaged to with an ileostomy. It was no big deal to me and it didn't define her as far as I was concerned. And would someone think my issues are such a big deal to her? I hope not. Point is, I hope this all makes sense to you, so please think about it. My heart does not lie.
Now, may I give you a virtual hug? You really deserve it!

 

[Archives1]

Snow, thanks for sharing your story! I have to admit, if I were still dating, I'd probably dread the idea of an ileostomy a lot more - it's easy to wonder who'd be willing to date some guy wearing a diaper and with a bag of poo taped to his stomach.

As others have pointed out, it's not as simple as that. A good relationship isn't just about physicality, it's about connecting on a psychological and spiritual level. It's about being with your best friend, and sex can be a very small part of that.

At the risk of oversharing, I've been married to my wife for six years, and sex is really not a big part of our relationship. We spend far more time just being physically close, talking and sharing ideas and stories, and just cuddling. That's what we really want out of the relationship. I may or may not be able to become erect after major abdominal surgery, at least for a while, and it's just not that much of a big deal.

The point is, don't think that you're undesirable because of physical traits. You've got more nice in you than most people, and you're bright and engaging. Finding someone who will appreciate your good qualities while not caring about your lesser qualities isn't easy, but don't write yourself off as cursed to be forever single. Somewhere, probably closer than you think, is a guy wondering how he's ever going to meet somebody just like you.

 

[Archives1]

Hi Itapilot,
Wow, you’ve had allot going on for sure. I guess you would just have to weight the cost vs. benefit for your unique situation and life. Being able to empty a bag is great for being quick and easy, clean and sanitary. And you can swap them out pretty quick when needed. Not to mention it’s allot cooler and less skin breakdown and diaper rash when it’s warm out. But then you have to factor in cost too for supplies vs buying a case or two of diapers each month.
I’m used to the different underwear I have to wear, but I also have times when doing a belly bag or leg bag work better. Just depends what’s going on and my fluid intake for the day.

Find out what the actual recurring costs and copays will be and weight them against what you are currently paying. You may be surprised and should consider everything before making the decision.

Hope you have a nice weekend,
Jim

It's not really a question of ostomy versus diaper, unless I convince my urologist to remove my bladder and give me a urostomy. The ileostomy would be in addition to still needing diapers for my bladder issues.

I suppose that might be an argument in favor of a J-pouch rather than an ileostomy - one of the main complications, especially in the first year or two, is fecal incontinence, and that's less of an issue for me since I already wear diapers. At the same time, I just as soon avoid having fecal incontinence, especially with a J-pouch where the leaked stool is extremely hard on skin because of not having passed through the colon.

I'm leaning toward talking with my gastroenterologist about going with an ileostomy. He hasn't brought it up as an option except in passing, and he's already recommended another colonoscopy for next June. But I'm pretty confident that he'll give me the referral for surgery if I push for it, and if not I can always go find a doctor who will. At the same time, I'd like to have the discussion with my gastroenterologist, the surgeon, and the hepatologist that I see once a year in Dallas, so that I get the viewpoints of all of the major specialties dealing with my digestive systems. I don't want to choose something that will complicate my eventual liver transplant, nor something that adversely affects my cancer risk.

 

[Archives1]

Hi @ltapilot, It sounds like you have a lot of bases covered as you move along with deciding what to do. Here's another idea. I've heard of some doctors referring patients who are in your position, contemplating an ostomy, about other patients who have had the same thing done. These patients have given permission to the doctor to refer new patients to them. That's a good idea as they may tell someone like you first-hand what to expect, from beginning to end. If your doctor could refer you to a patient or two who have had that done it may help you decide for sure. Do you remember in our "nurse thread" a couple of days ago when I mentioned the wound, ostomy, continence nurse (WOCN)? If your local hospital has one, she may be able to give you names of patients who are willing to talk about their experiences with someone contemplating that surgery. Along with that there may be support groups for people who have had ostomies although admittedly in this Covid era group meetings are easier said than done. I hope this helps as there is no such thing as too much help in contemplating this surgery.

 

[Archives1]

Thank you folks, for giving me encouragement about potentially meeting someone who will want the same things I do - cuddling and soul connection. I do prefer dating older men for this reason. Older guys know how to make LOVE and to build a profound soul connection. Younger guys know how to watch hours of free online porn and have learned from a young age that’s how a woman should be treated - not! So I will continue to date “up,” once I’m more ready to date at all.

 

[Archives1]

Good for you snow. I am confident you will find a wonderful person who will love you unconditionally and treat you the way you and everyone should be treated.

 

[Archives1]

Hi Snow, I honestly believe there will come a time when you are ready to date. We have discussed all of the reasons up above and every one of them is completely valid. And I have absolutely no doubt you will make it. I have faith that you are going to do it. Just believe in yourself. And thank you for endorsing us "older" guys. Coming from you, that is a real boost! Well I don't consider myself to be "old," as age is just a number. But I believe (or I am told) I have a more youthful outlook combined with life experiences. That probably comes from my connecting with kids for the past 10 years at the nature center. I can empathize with them. But I also like to think that I know how to treat women lovingly and with empathy, and also as equal partners.
Let's put it this way! I just can't see you with a younger guy, or someone as you described who gets his kicks watching porn ad infinitum. That just isn't in your world. Frankly someone of that ilk simply doesn't deserve you! They aren't ready for a real woman who has experienced life's ups and downs. Instead I see you with someone who appreciates the real you, can help you take on the world and cherishes all that you have to offer.
Whoever ends up with you will be very lucky indeed and will treasure you. So let's think of when this happens, not if this happens!

 

[Archives1]

@billliveshere Awwwwww, thank you so much for your kind assessment and encouragement; you brought tears to my eyes!

Okay, you friends have convinced I’m worth more than “damaged goods” and will find love again in my future. I’m very grateful for your wisdom and support! I’ve felt so much better overall with life since I became active with this forum.

LOVE LOVE LOVE you peeps! Have a great weekend!!!

 

[Archives1]

@snow, You go girl!!! (another virtual hug!)

 

[Archives1]

We're all "damaged goods" on some level. You don't get through 30, 40, 50 or more years of this life without a big dose of adversity. Someone who's mature in their relationships isn't looking for someone perfect, but rather someone who's able to enjoy the good parts and survive the bad parts. That may be someone older, but it's really about maturity, not age.

When the time is right, you'll find the right person!