Struggling with emotional and physical challenges after rare surgery - seeking advice

Hi everyone! I'm new here....I have thought of joining for some time now, and finally decided to do it. I had surgery exactly one year ago to create what is called a double barrel ostomy (meaning EVERYTHING comes out of one stoma....ureters are connected to the bowel). I was only the second patient at Ochsner Medical Center to undergo this type of surgery....it is very rare that they resort to it. The surgery was almost 8 hours long and was very traumatic for me. I have many complications even a year later. But the toughest part is emotional. I just cannot seem to get rid of a feeling of hopelessness. I really have no support emotionally, and I am overwhelmed with loneliness. I wake up crying and go to sleep crying. I do have occasional good days, but they are rare. A little background for reference.....In 2013, I was diagnosed with cancer. By the time they found it, it was stage 4 so it had to be treated fast. This meant lots of pelvic radiation and chemo. I went into remission (yay!).....but a year later I found out my bladder was fried from the radiation. So I got a radical cystectomy and a urostomy. This began a cycle of infections (some septic) to the point where no antibiotics worked anymore (vancomycin-resistant infections), and only meropenem or daptomycin worked. I lived with nephrostomy tubes on both kidneys for months. Fast forward 6 months, and the same thing happened with my bowels. This is when the doctors said that the only thing to do was to create this type of ostomy. They removed much of my intestine and connected the urinary part to the intestine that is left, so now I can't even give a urine sample as it is contaminated. So here I am....except all the support I had when diagnosed with cancer drifted away. I have been sick for so long and people just started staying away. Going on 8 years I have been dealing with this, and NO ONE comes around or even calls except for my sister. I feel as though I am dying a slow death and no one cares. I don't know how to deal with this....I feel like a leper or something. The hardest part is that people have always liked being around me....I was pretty, popular, and intelligent. People respected me because I read a lot and could discuss anything. NOW I have lost all that and people avoid me because they "don't want to see me this way". I am down to 105 lbs (from 156 lbs) I guess I look sick. I wonder how they think I feel! I have to deal with this EVERY DAY. I am terrified to die alone. The doctors failed to tell me that most people who have this surgery do not have a very long life expectancy (a few years).....knowing this is traumatic for me. I think about it all the time, and I mean ALL THE TIME. I'm sorry this is so long, but it is a complicated story. So does anyone else find themselves like this? Does anyone here have a double barrel colostomy? I cannot find anyone else with it, so maybe someone here does? I wonder if I will ever feel right again....as in thinking clearly, getting strength back, depression, etc.? I AM grateful to still be alive, but I feel like I am merely existing, NOT living. If I am going to be alone, I at least want my own place so that I can have things the way I want it. I am living in someone else's home, so I can't decorate or do things the way I want it. I feel like living in my own place and creating an atmosphere I feel peaceful in would be an instant mood changer.......my living situation is a whole other issue (but causing a lot of depression as well). OMG I just proofread this and it sounds pathetic lol. I just need some advice. If you made it this far, thanks for taking the time to read it. I'm not a "Debbie Downer" I swear! :)

Dear Kat,

What a tough time you have had, and continue to have. I'm so sorry you are going through so much emotional pain, as well as the physical changes. I have never heard of a double barrel ostomy. Maybe someone else on this site has more information. You certainly seem to be in a state of clinical depression, and I would suggest that the help of a mental health professional is required. Lacking the emotional support you need, you could certainly benefit from talking to someone. There are people on this site who have backgrounds in that field. I am sure some of them will jump in with concerned advice. You made a good choice in deciding to join this group. You will get lots of support from people here, and that can really make a difference in your mental attitude. One year in is still early in the game, there is much to deal with. I hope you will continue to post and give us updates. As we say in the south, bless your heart!!

Lucy

Hi Kat,

I don't know whether you are on any other online support groups. I highly recommend a Facebook ladies group that I am in. It's called Ladies Ileostomy Group. If you can't find it on there, send me a message and I will help you locate it. Most likely you will find somebody there who has been through something similar. It is really a great support group with a lot of different ladies with varying experiences. I am about a year past my surgery as well. I did not deal with any cancer or anything. But I did have an unexpected surgery, due to becoming septic and having a perforated colon, with a bad flare-up of UC. I have dealt with a lot of depression as well. About three months ago, I started with a new therapist who is helping tremendously. I highly recommend therapy. I highly recommend finding a therapist who specializes in trauma. It does sound like you are dealing with some severe depression. You've been through so much! Do not underestimate the trauma you have been through! I don't have a huge support system either. And that really makes things harder too. Feel free to send me a message if you want to email outside of this format. Hang in there! Hugs, Shelly

Hello Kat. 

Welcome to this site and I do hope that there are people on here who are able to chip in with expereinces of the specific issues you face with your double-barrelled ostomy. However, in following the many past posts, I have gained the impression that one of the major facets of dealing with stomas is the psychological and emotional effects it has on those who are new to the condition. Lucy and Shelly are  quite right when they suggest that some sort of counselling or therapy might be useful because all that is involved and surrounding this operation is as 'traumatic' as it gets and this can lead to post traumaitc stress (which reflects in some of the symptoms you describe in your post).  It is very difficult to deal with that stress on your own and I am not convinced that trying to overcome it online is the most effective way of  managing and overcoming it. Of course, we will try to help as much as we can, but the written word is not always the best solution. It is difficult to beat having someone who can listen (forst-hand) empathetically to your story as it unfolds, and a good therapist can do this. However, I am also a firm bleiever in the power and efficacy of DIY in these matters. IN your post, you are already pointing yourself towards some of the things in life that might help to make your life better.  You point to having a place of your own, that you can decorate and arrange to suit yourself. These are hopeful and positive thoughts which may help you to look forward to a more supportive future. The very fact that you have expressed yourself and told your story to us  is surely a good first move towards ordering your thoughts on the subject, and a move in tnhe right direction to get your mind sorted to deal with emotional side of things.  I usualy do this for myself and others by way of composing rhyming verse. Thus, in the next few days I hope to be able to come back with something to reflect your own situation and link it to what others have told mee about they have overcome their traumas in the past. Hang-on in  there, and hopefully we can provide some of the support you need at this difficult time. 

Best wishes

Bill  

Hi, Kat.

I am so sorry that you are going through so much right now. I can't chime in on the double-barrel ostomy, but the fact that you have reached out on this website tells me that you still have hope. You believe there is a way to move forward and through this highly stressful period in your life, and you are totally correct!

Please take the advice of Lucy, Shelly, and Bill to heart, and meet with a therapist - perhaps one experienced in trauma.

Certainly do what you can to improve your environment, adding to and changing it to help create and support your foundation of daily happiness. This includes your internal environment - your perspective. Gratitude, realizing what blessings you have no matter how small they may be, is a very conscious practice and a simple thing to incorporate into your day. Even being grateful that the sun has risen, once again, can be helpful.

It may sound trite, but gratitude is a very powerful thing. Some people promote writing down 1-5 things each day for which you are grateful. For me, I just take a deep breath (for which I am also grateful to be able to do), recognize that I am still alive (for some reason, even if I never find out for what specific purpose - and I'm okay with that), and then look around me... My cup of hot herbal tea tastes wonderful and warms me from the inside. Is there beauty in a potted plant or nature's symmetry in form, color, the feel of the wind against my face, the sound of birds, children playing nearby? A vehicle passing by in one of my favorite colors? One thing that helps my mood is music; something upbeat and fun, if my mood calls for it. Perhaps a song about broken hearts or hard times to let me know that I'm not alone when I'm feeling sad.

Kat, whatever you're feeling, whenever you're feeling it, it's all right to feel. It's all right to cry. Sometimes crying and other ways of expressing yourself can be cathartic and a way of releasing stress. Right now, it sounds like you're more than a little depressed. Reading your post, it's understandable. Sometimes we can be so entrenched in what seems like a hopeless situation that we forget that there are remedies, tools, to help us. Again, reach out to a therapist. And please don't wait.

In the meantime, focus on your physical health, Kat: stay hydrated with water to help remove stress-created toxins from your body. Eat nutrient-dense, healthy foods to support your immune system. And treat yourself every once in a while to remind yourself that life can, indeed, be sweet.

Please keep reaching out to us, letting us know how you are doing, Kat. And, breathe... In. Out. Repeat. Take another step forward. Smile when you can. Laugh when you're able.

My best to you, Sweetie!

Lily17

Staying Hydrated with an Ostomy with LeeAnne Hayden | Hollister

Hello Kat,

I have no knowledge of a double-barreled ostomy. It sounds like a radical surgery. You have come to the best site for all things ostomy. I think most of us would be happy talking via messages anytime. We are all in this together, therefore sharing a common ground with each other.

I am almost two years since my initial surgery (colorectal cancer stage 3a). I just have one ostomy, but I too had the pinpoint radiation which fried my flesh like you. I had to go back to the hospital twice, once for IV antibiotics (4 days) due to infections and another surgery to cut my butt back open. It took months and months for the infection to clear and 2-3 dressing changes a day, then a wound vacuum for a couple of months after while the void grew back together. So I spent much of my time lying on my side.

We all have some kind of trauma physically and emotionally that we deal with - but it gets better, week by week, month by month. It's our journey.

For us, the questions and support we give and get are reciprocated. I started out feeling overwhelmed, similar to you, and the wonderful people here have changed all that. We benefit from others' life experiences. The support and wisdom here is so valuable for healing and dealing with daily care and friendships.

I hope you will post and message us. We are all in this together. Mtnman

Okay Kat.

Your situation has pierced my heart and convinced me that I would never get to sleep unless I at least tried to pen a rhyme to encapsulate your story and indicate that we have listened to what you have to say and want to try to help. So, here goes :

Best wishes

Bill

WILL I EVER FEEL ‘NORMAL’ AGAIN.

With so much for me going wrong
and it’s been like this for so long,
my mind is filled with hopelessness,
despondency and helplessness.

With cancer and with radiation,
not without its complications,
I’ve ended up with operations
far outstripping expectations.

It’s hard to say just what I’ve got,
for one stoma now does the lot,
so, all the pee and poo I do
must use that single avenue.

My intestines and urinary tract
are now joined, so this in fact
means that I cannot now perform
tasks that for others are the norm.

On top of that, the other part
is what has happened in my heart,
for the support I thought I had
has up and left or turned quite bad.

Right now, I feel I’m on my own,
not managing, and all alone,
or, at least, I am inside,
for that is where I try to hide.

No one visits me anymore,
which really cuts me to the core,
because, before I’d friends galore
so, this was not what I foresaw.

I’m feeling that there’s no one there
with whom I can both care and share
the things that I am going through
and see things from my point of view.
 

I’m losing weight and feeling sick,
and life has become chaotic,
for I now know, that as things go
I may only have a year or so.

What sort of new things should I think,
now even life is on the brink?
Is it no wonder I’m depressed?
for all these things make me so stressed.

I wonder how folk think I feel,
when they know I have to deal
with these issues every day
and they will never go away.

I wonder if they give a damn
about the way I feel and am,
or if they simply carry on
like I was never sine qua non. (essential)

It makes me wonder if I will
be anything, other than ill,
or if I can feel right again,
free from angst and free from pain.

Will things ever change for me,
or is this how I’ll always be?
These are questions that I find
are always foremost in my mind.

I’m feeling that I just exist,
and want to somehow now insist,
that from now on things will be changed
and my life will be rearranged.

I hope that I can move along,
and put things right that have felt wrong.
Maybe if I could make a move,
my situation might improve.

                               B. Withers 2020 (for Kat)

Thanks for taking the time to reply, LuLu! I agree that I need to talk to someone. I was thinking of speaking to my doctor about it, as it is really getting bad. I am just so tired of always being sick. I try very hard to stay positive, and most people would be shocked if I told them how bad it is. But I feel as though I cannot maintain this facade anymore. Most of it is because I feel like time is not on my side, and I just want to enjoy the time I have left. I don't have the luxury of being able to wait. I think if I could change my situation, I would do much better. Bless your heart too, dahlin'! (I'm from New Orleans, lol)  

Hi Shelly....Thank you for the info, I will check it out. I do plan on getting my doctor to refer me to a therapist. She mentioned in passing that I may have PTSD so perhaps that could be what is going on as well. I have had a lot of traumatic things happen.....the most recent was my 16-year-old granddaughter passing away 3 weeks ago. So this whole year has been bad. I am so sorry you went through all that and I know it is even harder with no support. I think when you are ill for so long people just don't know what to do for you....but the thing is, they don't realize we don't EXPECT them to DO anything....just treat us like they always have and just BE THERE. Know what I mean? It's tough on both sides, I guess. Thanks for the offer to message :)   I really appreciate that. If you need someone to listen, you can message me as well :)

Hi Bill! I do intend on getting a counselor to help me deal with all this. I know what would improve things for me, it's just that getting to that point may be difficult. I just want to enjoy the time I have left, and I am very unhappy where I am right now. I want to do what makes me happy, I need to express myself. My problem is that I am too kind-hearted, and always put other people's needs ahead of mine. I go without so others can be happy. I know it sounds strange, but it makes me happy to nurture others, often to my own detriment lol. I joined here in the hopes that perhaps I could find someone who has had this type of surgery, as it is not a "common" colostomy. I have searched and searched and have not found anyone who has had this. I feel like some kind of experiment haha! Even some doctors I have seen say they never heard of it before. Kind of scary. I would LOVE to hear your poetry! I love all art, music, poetry.....anything creative. That is something I have always been good at (art), but have let it fall by the wayside lately. Take care, and please post your poem when you finish it. Nice to meet you and thanks for replying :)

Bill....I just sent a reply to your first message telling you that I was looking forward to your poem....then I saw it there! You put in words the exact thoughts in my head! How did you do that? OK...I'll admit it....I am crying like a baby. Not because I'm sad, but it feels so good that someone understands how I feel. You have a real talent.....thank you so much, I will keep this forever! So very thoughtful and kind of you :)

Kat,

I am so sorry to learn of your granddaughter's recent passing. As hard as this year has been for you, it is good to know that you will be talking with a therapist. You say you just want to make the best of the time you have left... That first appointment is a good place to start.

Please stay in touch.

Lily17

Hello Kat. 

I am so glad that you liked and appreciated the rhyme. I have been composing this sort of rhyme for individuals with relatively unsolvable problems over many years so, the compositions have become much more practiced as time and rhyme moves on.

Normally, only the individual concerned gets to read and keep the rhymes because they are deliberately personal. However, in your case, although the specifics of the operations and your condition are somewhat unique, the psychological and emotional traumas are shared by many others on this site. For this reason, it seems important to continue sharing our experiences and being 'there' for each other when we need it. 

Best wishes

Bill

Well, you clearly have a talent, and one which can mean so much to the person you wrote it for. You just met me, yet you expressed exactly how I feel. It touched me so much, and I thank you for that. Don't ever stop.....this is a gift! 

Hi Lily! I do plan on talking to my doctor about a referral :)  I understand what you said about being grateful. I am normally a true optimist. Still, even though I am down right now, I get up early just to watch the sunrise. I found 3 starving cats who I nursed back to health, who I feed each morning, and they make me smile (fat and cute now), they were skeletal when I found them. It makes me happy to make them happy :)  I have a beautiful Japanese plum tree which has become home to a huge flock of birds, who I love watching (I made them fountains and a swimming pool lol, so I even have the wild birds spoiled! I love animals, as I guess you can tell. I am so grateful for every day, but just need a place of my own. That is the issue I think. It is not easy living under someone else's rules. I love to nurture and create, and I have no outlet for this, and I feel stifled. I know if I had a place of my own, I could do what I want, when I want. That is what I need to focus on, I DO have hope, I just need to figure out how to make it happen. As I said, I don't have the luxury of time, so it has to be soon. I don't want to give the impression that I am giving up, because I will fight until the day comes when I can't. Thank you so much for your very kind reply, and it is very nice to meet you :)  I will remember all you said.....thank you! ((hugs))

Thank you for the warm welcome! I see what you mean, as I have only just joined and am surprised at all the people who responded with such kindness! It feels really good to talk with people who understand and have gone through many of the same things :)   It is very hard (as I am sure you know), to talk about it to someone who has not gone through this. They try, but they can't really relate. I am so sorry you had to go through all that, but glad you are here to tell it. Thanks again for the kind words, it is MUCH appreciated :)

You are right it was a very radical surgery. I was only the second person to have it done ever at Ochsner Medical Center. They removed much of my intestine, and then they took the ureters from my kidneys and attached it to the colostomy stoma. The stoma has 2 holes in it, so everything goes into the pouch (both urine and feces) This is why I can not give a urine sample anymore as it would be contaminated. There is a lot more to it, (it took over 7 hours to do the surgery. Very complicated. So I have many issues, some common colostomy issues, and some unique ones as well. Hoping to meet someone here who has this, but no luck so far.

Hi Kat, first of all, welcome to the forum. I hope you will find some comfort in the friendship and support, and knowledge, that is in abundance here. You have definitely had more than your share to deal with and the fact that you are still pushing on and reaching out for help shows your strength of character. You have received loads of good advice already and I'm really glad that you are going to get some help in the form of professional therapy. There is only so much that this forum can do, and as valuable as it is as a resource, we are not professionals. This forum has been a big help and support for me. I do not have a "double barrel" ostomy, but I do have two stomas. One is my initial stoma from my colostomy and the other is a stoma from my recent ileostomy, so I know what it's like to have to deal with two holes in your gut. My old stoma is inactive and hopefully only temporary. I have one more surgery ahead of me to remove the rest of my large intestine and close up the old stoma site. This is not a sure thing as it all depends on how I function with the new ileostomy. So far, I am having some problems but I am hoping to overcome them, as going back to what I had is not something I want to consider. It was not good. I don't pretend my situation compares to yours, but sometimes focusing on another person's problems can help put things into perspective. I hope you will find more reasons to be positive and optimistic. None of us really knows how long we will be on this earth and doctors are often wrong. Don't give too much weight to some negative prediction about life expectancy. We all need to make the most of every day, because it may indeed be our last. Feel free to private message me Kat, if you feel like talking about anything at all. Be safe.

All the best,

Terry

Kat, I cannot imagine how you are feeling. You remind me of my husband who only had a urostomy. He never accepted it and was so embarrassed about it. I know that it must be difficult to have something so unique that you cannot find anyone else who knows and appreciates your exact issues. (I have a rare birth defect that most doctors do not even recognize nor treat. I was 69 years old before I learned what it was and where it could be treated. I finally went for treatment, found a support group there, and actually met other people who had the same problem. My self-image improved because I no longer felt isolated.) If Ochsner has been pioneering your type of surgery, maybe you could suggest that they start a support group. I also recommend following the suggestions of others and finding counseling. I took my husband to MD Anderson for treatment and urostomy surgery. They offered group counseling for family members, and I found this exceptionally helpful. I hope that you can connect with Ochsner and that they can offer counseling help, group or otherwise. With such a unique treatment, Ochsner must have support and follow-ups to study the effects of this solution.

Trying to sleep at night must be awful. I had to adapt a night container for my husband using a large vinegar bottle and getting longer tubing so he could turn over in bed. He was afraid of overflow, so he kept it in a bucket. He could carry it around in the morning while drinking his coffee and eating his breakfast before getting dressed and having me change his pouch. I have unused night bottles if you need them.

I am thinking about you. Stay healthy. Dover

Hi Kat - I've not been on this site for ages after many years of coming here, but your situation grabbed my heart and twisted hard. Like you, I had my bladder and ureters "fried" by radiation and further problems due to surgery for fistulae. Since 2009, I have had my colostomy, did pretty well (after 5 years of resisting it), but once the urinary incontinence started up, things got a lot harder. My surgeon has spent 10 years trying to convince me to have a urostomy to "fix" the problem, BUT...my feeling, as a woman, is I'd rather die than have 2 stomas to manage. He gives me stories of men who have 2 stomas, but I always ask the pointed question of whether they have wives to help them manage. Of course, they do! My husband wouldn't sleep in the same room with me with my first (temporary) double-barrel colostomy in 2002 and left me and the kids the next year. I totally hear what you say about people growing tired of our health challenges, and I've received very little support over 17 years from my family of origin. My parents tried, but I became their caregivers in 2008 and they've since died.

I've found great support and understanding at the UOA support group in North San Diego, where I live. I've had oodles of therapists, but none "got" it until I met one a couple of years ago who has had a lifelong chronic medical condition herself. Just like any other lifestyle catastrophe (sexual assault, PTSD, AA/NA, etc.), you will find the most knowledgeable and empathetic people among your "tribe". I agree with other posters here that online communication will not suffice. Be among YOUR new peeps now. On their website, look up where your local UOA support group meets and GO. You will find oldsters and newbies, RNs to help, and great educational stuff as well.

I'm all for gratitude, but find it gets wearing, especially for those of us who had completely normally functioning bodies before cancer or traumatic surgical outcomes (i.e., not Crohn's or colitis). I'm not always grateful to still be alive. Things are HARD, and "fun" is difficult to come by. My gratitude has been for seeing my children grow up and become lovely people and fully functioning adults even if their dad did kick them to the curb.

Sweetie, I salute you for your honesty and the hard work you've done to get this far. You are amazing, and those friends who have abandoned you are missing out. Just realize THEY are still in their well-functioning bodies (but maybe not for long if they are 60+). Everyone gets hit with something eventually, and they may come back when that happens. Be forgiving. And know that there ARE people who will be your cheering section if you look hard enough. At 45, I found a small church group of little old ladies, some in their 80s, who turned out to be mine. They saved my life. And I wasn't even religious!

Be your very best when you can, and when you can't, say "Fu*k it - I'll give it a rest for today." Pinky