Need advice on accepting my ostomy - struggling to cope!

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Jemmy

I really need help. I have had my colostomy for three years and I just cannot 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 are supposed to solidify 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 Crohn's. 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 colorectal surgeons won't even consider it. What can I do? Does anyone have any suggestions?

Puppyluv56

Jemmy,

I am so sorry that you have these feelings. 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 beforehand but that was all the notice I had to get my head around it. I was still undecided up to the day of 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 chosen 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!

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mild_mannered_super_hero

What are you eating? There are certain foods that really help with loose output. The few that I know about are potatoes in almost any form, bananas, and marshmallows. I am sure there are others. Have you asked your doctor about medicines that slow your output? Perhaps if you can get your output a little more solid, you can manage your ostomy successfully.

warrior

Speaking in terms of IBD, I do not consider myself an expert but am experienced. I hate the disease. From colitis to Crohn's to ileostomy, I tried every alternative oral meds, steroids, Remicade, and it was so bad, the bleeding from the intestine, it had to be done as an emergency. I feel for you.

Superhero has a very good point about those certain foods. You will eventually know what makes you solid and what makes you liquid. I stuff myself with marshmallows daily and I have solid output. That liquid in the bag scares me silly.

Since I have no large intestine, and now Crohn's in the rectum, I cannot be hooked up in fear of Crohn's "traveling". Your family is right to be concerned. You may become more ill upon hook up. I can't even think about it, so I am stuck with the bag. I blame IBD for the 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 worse 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. You got a loving husband, did you know couples divorce over this stuff? Cowards. But really, count your blessings. Good man in your life. Wonderful caring family. It may take a lot of time but you get your answers and you 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. Don't mess around with IBD. Keep your chin up, hon.

Pip65

Hi Jemmy,

My name is Pippa from London (age 53) and I feel for you so much. Everything you describe happens to me too. It makes you feel very lonely. I had sepsis and had an emergency Hartman's procedure two and a half years ago. I still live in huge pain from scar tissue and nerve damage. Like you, I can't "normalize" anything that has happened. I have probably met every top surgeon now in London. Finally, I 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 am 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 potato or chicken, which helps. But I have been to see a gut function consultant because apparently, "run through" from eating to output shouldn't be as quick as it is (20-40 mins).

 
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Pip65

So he's doing gut function tests.. Maybe you could see someone about it too? Pippa

Jemmy

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

Dbowen2018

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 have 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 bursting appendix spreading all this cancerous mucus 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 don't 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 don't have a husband. I have a sister and brother for support. My 2 cats and dog are the only things that keep me going. God bless you, I completely understand how you feel.

Silveradokid

Hi Jemmy. I remember all too well the severe pain I experienced for years pre-permanent colostomy. At one point lying in the bathtub fully clothed in agony with unstoppable poop coming out of my irritated rear. Horrible. I wanted to die. Since the surgery, I can now go to the theater, 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!

NewlifeVictoria

I just read that you developed ulcerative colitis after quitting smoking. Wow, I feel the same thing happened to me. OMG... How are you doing? My name is Victoria and I wanted to say that and write if you like. Victoria from New Jersey, have a good day!

Puppyluv56

Victoria,

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

Pup

Immarsh

This is for Jemmy, and others who have difficulty accepting day-to-day issues with an ostomy and for others who think getting 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, being out of school, socially isolated (40+ times in the bathroom per day), continual medical treatment, transfusions, and medications. I had no life. Finally, when doctors ran out of things to try, they recommended 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 possibility of being re-hooked. That was way back in the 1960s. 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 there maintenance problems? Absolutely. My stoma and digestive system have 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 used 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's. 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 years 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...

NewlifeVictoria

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 an uncomfortable feeling like it's being twisted or wrung out like a washcloth. It's not a good feeling. Did you go through this? I have been diagnosed with severe ulcerative colitis and Crohn's 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 I don't want to spend the rest of my life alone. I pray I will meet someone!! I hope I get to feel better than this. I have to say that my stomach hurts, and I, Victoria, don't like this feeling. Pray I'm okay. Thanks, Vic.

NewlifeVictoria

Marsh, I'm happy you texted. Please email me when you can and maybe text in the chat room? I hope you're feeling better today! That's a long time, Marsh. Thank you for texting me and it will be nice to chat if you like? Here or wherever... I'm sorry to hear about your sons. Unfortunately, aww, I'm so sorry. How are they? I heard it wasn't hereditary. Idk, I heard many stories of eating and whatever 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. I feel cramping, pain, and my stomas prolapsed and I'm not able to eat like everyone else! I started doing more things doing su

NewlifeVictoria

I'm 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 somehow.... Last few months have been more confusing and uncomfortable with pain... I hear so many good-many stories about their stories with a colostomy bag. They can eat anything, they do a lot, they do a lot and I've been trying to do more; everything is so different for me. I pray a lot and just want to feel better.

Puppyluv56

Victoria,

I am so sorry you are having such a difficult time, but each of us is different and has individual issues to work through. I had cancer with chemo, radiation, and several surgeries to overcome, but none of the things you have. We all have our limitations and learn which ones we can push to overcome and which ones to accept as part of our new life! Push to your satisfaction! I try to limit my lifting purely for not wanting a hernia, but otherwise just dealing with the ugly side effects of cancer treatment! There is no race, and your time frame is what you make it, so take it slow and you will progress and be surprised how far you can go!

Puppy

Immarsh

Hi, this is an update for Vic and for Jemmy and for anyone who is having difficulty with very liquid output....

I've had my ileostomy for over 50 years (ulcerative colitis) and through most of the time, I never really had a problem with food. About 5 years ago, I started having bloating and gas problems, and then profuse, liquid output for days at a time, resulting in dehydration and sometimes hospitalization. I kept thinking it was a reaction to food or a persistent virus or a blockage... There seemed to be no answer. This year it got to me again, and I went back to a gastro dr. I'd seen years before for liver issues... He "knew" what the problem was immediately. FODMAP.. That's an acronym for some sugars and carbs found in foods, vegetables, and sweeteners that trigger IBS symptoms, especially in people who do not have a large intestine.. It's not an easy resolution, since there are a lot of chemicals and foods, and you have to self-test....to see which ones agree with you and which ones don't. It's also about amounts.... I can eat hard cheeses, but not soft.. have to avoid other dairy products, but testing shows that I can have small amounts. Lemons, limes, and other fruits can cause problems, but some in small amounts don't bother me... It took months of trial and error, but for the most part, I don't have the "persistent" gas that was waking me up at night and breaking the seal on my ostomy wafer... If I get careless and eat too much of the "wrong" foods, the gas and liquid output returns... I'm sick of reading labels, but I've restricted my day-to-day diet, *which does get boring) but seems to be working.. Basically, I'm avoiding wheat products, have oatmeal for breakfast.....eggs or fish for lunch....Meat isn't a problem, nor are carbs, but veggies and fruits vary... I'm a real foodie, but I'm grateful to have some control over something I thought I'd never be able to manage.. Hope this helps... Best regards....Marsha



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