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Acceptince

 
Posted: Tue Apr 02, 2019 9:03 pm

I really need help. I have had my colostomy for three years and I just can not accept it. I have tried support groups,I have prayed about it, talked to my family. Nothing helps. I am 60 years old if that makes a difference but I just think it is so disgusting and I feel like an animal. My husband has been wonderful and when I have a leak which seems to be happening a lot lately he is so good about doing the laundry and never complains. My ostomy is always flowing straight liquid. I have tried the packets that’s supposed to salidify the liquid and it really doesn’t work. I’ve tried the stuff you use to make jelly to no avail and also tried the packets that you mix with water and Imodium. Nothing works. It is relentless!

I have posted before about getting a reversal. I have about 8 inches of my large intestine left and the surgeons have hacked into my small intestines as well due to Crohns. I have found one doctor who has agreed to reverse me but my family is against it. They say I will be so sick again. I spent 2016 in the hospital and missed all the holidays and birthdays I was so sick and almost died. My cole rectal surgeons won’t even consider it what can I do? Does anyone have any suggestions?



Last edited by Jemmy on Mon Apr 08, 2019 8:11 pm; edited 1 time in total
 
Posted: Wed Apr 03, 2019 12:02 pm

Jemmy,

I am so sorry that you have these feeling. It is a hard thing to accept. I would have never thought in a million years I would have an Ostomy. I had Cancer so mine was done suddenly. Well I had several months of chemo before hand but that was all the notice I had to get my head around it. I was still undecided up to the day if surgery but hopefully, it has saved my life. Maybe yours has saved your life as well! I am glad to have “Betty” and go on about living. Would I have chose this, never, but since we are intimate, we might as well be friends! 

Hope you find a way to accept yours as I have! I wish you the best!

 
Posted: Wed Apr 03, 2019 9:01 pm

what are you eating ? there are certian foods that really help with loose output, the few that i know about are potatos in almost any form, bananas, and marshmellows. i am sure there are others, have you asked your docter about medicines that slow your output? perhaps if you can get your output a little more solid you can manage your ostomy sucessfully. 

 
Posted: Sun Apr 07, 2019 12:08 am

speaking in terms of IBD, I do not consider myself an expert but am experienced. I hate the disease. from colitis to chrons to iliostomy.  i tried every alternative oral meds, steroids, remicade, and it was so bad, the bleeding from intestine, it had to be done as an emergency. I feel for you.

super hero has a very good point about those certain foods. u will eventually know what makes u soild and what make u liquid. i stuff my self  with marshmellows daily and i have solid output.  that liquid in the bag scares me silly.

SinceIhave no large intestine, and now crohns in the rectum, i cannot be hooked up in fear of crohns "traveling". you family is right to be concerned. u may become more ill upon hook up.  i can't even think about it so i am stuck on the bag. I blame IBD for angry life i lead. i too feel this is a disgusting illness only people with it can appreciate others with it. so here we are.  you know what they say"there is always someone worst off than you". true be it as that may, but I am stuck with me and can't get over it.  We are a rare breed. u got a loving husband, did u know couple divorce over this stuff?  cowards.  but really count yur blessings..  good man in yur life. wonderful caring family.  it may take alot of time but u get your answers and u get your punching bag out.

I would think twice about reconnecting. i hate i said that. but it was told to me and i still hate repeating it.. dont mess around with IBD.  keep yur chin, hon.

 
Posted: Mon Apr 08, 2019 5:01 pm

Hi Jemmy

my name is pippa from London ( age 53) and I feel for you SO much.. everything you describe happens to me too.. makes you feel VERY lonely. I had sepsis and had an emergency Hartman’s procedure two and half years ago, still live in huge pain from scar tissue and nerve damage and like you, can’t “ normalise” anything that has happened. Have probably met every top surgeon now in London, finally found one who has agreed to “ take me on”, but as you know, it’s not without risk. I have a 12 year old son who is amazing with me, but he is as terrified as I about the reversal in case I nearly die again.... it’s like living in a twilight zone. When my stoma is very bad, I eat “ bresaola/ cold beef” and a jacket potatoes or chicken , which helps. But have been to see a gut function consultant because apparently “ run through” from eating to out put, shouldn’t be as quick as it is ( 20-40 mins) 

 
Posted: Mon Apr 08, 2019 5:05 pm

so he’s doing gut function tests.. maybe you could see someone about it too? Pippa

 
Posted: Mon Apr 08, 2019 8:09 pm

Thank you all for your posts. It helps to know I am not alone with this mess!

 
Posted: Tue Apr 09, 2019 12:22 am

Jemmy

I am 66 and 1.5 years ago I woke from surgery for what I thought was for removing my ovaries which they thought were cancerous.  Turned out I had appendix cancer (very rare). To my horror I woke from recovery to find I has a colostomy. I hate it. Then to make it worse the stoma prolapsed due to a parastomal hernia. No one warned me that could happen. I found out more from the internet than from anyone at the hospital. I went to Mayo clinic after. I had sepsis due to the burting Appendix spreading all this cancerous mucous throughout my abdomen.  The surgeon at Mayo told me he didn't quite understand why I was given a stoma. The surgeon that did it said he was "afraid" I had a blockage. I told him to put it back. He said I would have to be cancer free for a year. I went to 4 surgeons begging them to reverse it. Now my cancer is worse. Stage IVa. I don't want to live. Tomorrow a surgeon at OHSU is going to reconstruct the stoma and if I decide to do it, she will do cytoreductive surgery which is where they open the abdomen like before and remove the tumors they can see. She said it will make me feel more comfortable, as right now I have a dull pain from the prolapse. She said I may live another 1.5 years. I am going to a Naturopathic doctor for support with vitamin C IV and mistletoe and Artesunate. If I dont feel better down the road, I will quit eating and arrange for Death with Dignity in OR. I hate my life. I used to  be so active and healthy. Why Lord I ask. I dont have a husband. I have a sister and brother for support. My 2 cats and dog are the only thing that keeps me going. God bless you, I completely understand how you feel.

 
Posted: Wed Apr 10, 2019 8:55 pm

Hi Jemmy. I remember all too well the severe pain I experienced for YEARS pre-permanent colostomy. At one point lying in bathtub fully clothed in agony with unstoppable poop coming out my irritated rear. Horrible. I wanted to die. Since the surgery I can now go to the theatre, out to dinner, eat dinner at home without living in the bathroom. All those things "normal" people take for granted. Life is so very precious. Enjoy this new normal knowing there are others who share in its existence. Thank goodness for modern medicine. All the best to you! 

 
Posted: Thu Apr 11, 2019 1:11 am
I just read you developed ulcerative colitis after quitting smoking, wow I feel the same thing happen to me omg,,, How you doing? My name is Victoria and I wanted to say that and write if you like Victoria from New Jersey have s good day!
 
Posted: Mon Apr 15, 2019 3:18 pm

Victoria,

I have never heard that before! Nothing is impossible and smoking causes so many I interruptions in your system, it certainly is believable! 

Pup

 
Posted: Mon Apr 22, 2019 2:11 am

This is for Jemmy, and others are have difficulty accepting day to day issues with an ostomy and for others who think gettting re hooked will be a panacea.....a solution for difficulty managing the ostomy..    My name is Marsha, and I've had my ileostomy since I was 15,   after 4 yearS of extensive bleeding,  hospitalization,  out of school, socially isolated ( 40 + times in the bathroom per day)  continual medical treatment, transfusions, medications.   I had no life.  Finally, when doctors ran out of things to try,   the recomended surgery, which my parents never told me was an option.   

I had the surgery, and all the initial adjustment, management,  poor supplies, trial and error, accidents, were worth it.  No more pain.  I could go back to school    The rectal stump was still intact, and after another 4 years of treatment, without it healing, I opted to have it removed, ending any posiibility of being re hooked.   That was way back in the 1960's/  I have no regrets.    I've lived a full and active life with the ostomy, married, had two children, went back to school,   got the high school, and college educations I missed, became a teacher,   worked , divorced and began to travel.  Were the mainenance problems ?   Absolutely.   My stoma and digestive system has changed with time,   so I've had to use trial and error, with new supplies, and procedures..   At 70,   I still have no regrets, only that  I can no longer digest foods that I use to be able to eat...   Fresh leafy greens,   foods with too much fiber,   corn....etc.   I'm not tolerating dairy well,   and have had to switch to Almond milk.   But plenty of people develop diet issues as they age, and I'm not immune to that..    I've lived more years with the ostomy than without, and I wouldn't change a thing,.....other than the fantasy that i'd never gotten sick at all.  But that's a fantasy.   Sadly,  my two sons, inherited our genes, and one has Ulcerative colitis, and the other has Crohn.   It's an ache in my heart.  But they both are maintained on medications, and my younger son, became Vegan, and is now off all medications after 20 yeaars on.   We're blessed to have had the option of surgery......and I never stop being grateful, for the quality of life that it allowed me...

 
Posted: Mon Apr 22, 2019 9:29 am

Hi Thank you for sharing marsh, You really have been through it and I’m sorry I’m not feeling good with it and things seem to bother me so much I feel a uncomfortable feeling like it’s being twisted or wrung out like a wash cloth it’s nota good feeling, did you go through this? I have had been diagnosed with serve ulcerative colitis and crohns and had 3 surgeries in a year and one in 2013 was when it started 😢As for men they seem to not care about you or want to meet you ,it’s really difficult to meet someone it makes me so sad and don’t want to spend the rest of my life alone I pray I will meet some one!! I hope I get to  feel to better then this,, I have to say that my stomach hurts and I  Victoria don’t like this feeling 🙏pray I’m ok thanks Vic

 
Posted: Mon Apr 22, 2019 9:46 am

Marsh I’m happy you texted please email me when you can and maybe text in the chat room? I hope your feeling better today!Thats a long  time marsh thank you 🙏 for texting me and it will be nice to chat if you like?Here or where ever... I’m sorry to here your sons,unfortunately 😢🙏aww I’m so sorry how are they ? I heard it wasn’t hereditary idk I heard many story of eating and what ever I  do to dating.. Like I had 3 surgeries in a Year and it’s now been 15 months and I have to say 🙏😢, I really don’t feel good and I feel Cramping, pain, and my stomas prolapsed and I’m not able  to eat like every one else! I started doing more things doing su

 
Posted: Mon Apr 22, 2019 10:20 am

Im continuing from my last email I was saying I started to do more things,  cleaning and bending over  “to pick up some things isn’t good to do!! I was lifting small boxes and moving around more and trying to accept more stuff that I’m not able to do😇I really thought it would be easier,able to do more after surgery and it’s been 15 months , so I’m sad to say whatever I do I pay for it or it just bothers me some how.... Last few months have been more confusing and uncomfortable with pain... I here so many good-many stories about there stories with a colostomy bag they can eat anything, they do a lot, they do a lot and I been trying to do more  😢Everything. Is so different for me . I pray a lot and just want to feel better 

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