Seeking advice: How long to adjust to ostomy?

Hello, this is my first time leaving a little blog. I have had my ostomy for 1 1/2 years. I had an ileostomy for 3 years before. I guess my question is, how long does it take to get really comfortable with an ostomy? I am still having problems.

I don't know if we ever get comfortable. Time does make it better, but this is something none of us asked for. I've had my urostomy for 1 year. Yes, I have learned to move on, but comfortable, not really. It's easier when everything goes right and no leaks, but time heals and does make us feel better, and I'm here to see my son playing minor league pro baseball. I always look for the bright side in life now. Hang in there, we'll all adapt.

Thank you Tomoc, and yes I am blessed to be a part of my grandsons' lives. And it is the comfort I am looking for also. It's just some days I think that will never happen, but I will never give up.

I've had my ostomy since March 27 of this year. I thought it would be more difficult to deal with, but I just look at it as another way to deal with a normal body function.

This thing does not change who I am or what I believe. I will not let this little bag shake up my life.

You are still the wonderful person you've always been. The people that count still love you. You're alive and moving forward. Hold these thoughts in your heart. Really, this does not change you except you know now you are a survivor. That is very special.

Find the funny stuff about your ostomy. As long as I'm cancer-free, I'm really good! Write to me anytime.

Thank you, Vangie. I know the people around me still love me. It's me, and I will figure this out, and yes, I am still the same person I was before this happened.

Well, really you're not quite the same, you're stronger.

I have had my ostomy since Feb 18th, 2017 when I had to undergo major surgery to save my life due to a massive colon infection. At the same time, they found I was already stage 4 with non-Hodgkin's lymphoma, which I NEVER would have known about had the infection never happened. I have gone through and still going through chemo, and right now happen to be in remission. It's been really hard, but I too am grateful to be alive and also have realized I am stronger than I ever thought possible. Hope things get better for you and always remember you are a survivor!!

Wow! What an incredible story. God's hand of protection is truly resting on you. Yours is a story of a blessing and a testimony.

You just made a superhero in my eyes.

You go, girl!

Elvira
You are an amusing lady and thank you for your amusing testimony.

Amazing amazing

Hi, Rosie and I have been a team for a little over 4 years now. I chose to accept my new normal when I awoke from surgery and felt my left side. I knew then this was forever as my surgeon had told me temporary on the right, permanent on the left. I was alive and an hour later he told me he felt confident that he got all the cancer in my rectum. More chemo followed, but I chose not to look back, just keep forging ahead. There was the usual learning curve, ups and downs, but that is
LIFE and I was living it every day. My amazing hubby, fam, and friends were a great cheering section. I still am opinionated, ha, they didn't give me a lobotomy, lol. I travel and do all the things I did before, just with more gratitude for all of it. So hang in there, you have already proved your strength by coming this far. Very sincerely, Rosiesmom aka Gail. Happy 4th.
I
F

Thank you, Gail.

Happy 4th of July to all of you that have shared your stories with me and have given me a new family to talk with. Thank you all so much.

Hello,
In my case, I had suffered through Brown's disease for too many years by the time it was diagnosed. They first said I had colitis and put me on medication. Then they called it colitis and a new med. I still kept getting worse. Then they called it ulcerated colitis, but I still kept getting worse. At about that point, I just stopped eating because the pain would be so bad after I ate. I got down to about 70 lbs. I am very short, but that is still way too thin. I was hospitalized for malnutrition. After being there a few days, I had a stroke. I woke up at another hospital annoyed that about six people were standing around my bed. I may have even muttered a "what are you looking at!" at them. They started asking me questions which I answered correctly all except for the day, date, hospital, and location.
The doctors at this hospital didn't pull punches at all, which I am grateful for. They diagnosed Carson's disease and put me on the correct medication. It was prednisone, so I couldn't stay on it long term. At certain points, they had to start lowering the dosages to wean me off of it for a while. When the dosage got to a low enough amount, I started getting very sick again. They were very straightforward again. They told me that, in their opinion, my colon would never heal well enough to ever be reconnected. I had two choices at that time. Stay on medication and be sick about half of each year when I was on low dosages or have the colon removed. He said I stood a much better chance at remission, but the ileostomy would be permanent once the colon was gone. I had been in so much pain and suffering with Carson's for so long that I didn't have to think about it at all. I said take the colon out. They wanted me to think about it since the ostomy would be permanent. When he saw me again, my answer was the same. I never needed to think about it at all.
The surgeon said my colon looked like shoe leather when he removed it. I went into remission, and that has been well over twenty years ago now. I have never regretted my decision. To me, the ostomy took away the pain, so I have never regretted it being there.
Of course, there are adjustment issues with good and bad days for everyone. My advice for them would be to take every day one day at a time. Whatever happened before, tomorrow is a new day.
Yes, leaks are embarrassing. Learning what you can and can't eat without having issues afterwards, etc. is part of the day-to-day living philosophy. As time goes by, you learn how to live with it and avoid problems. Like I know when I feel an itch around the stomach, the wafer seal is coming loose, and I need to change the appliance.
It may be natural for some new estimates to be fearful and nervous about the things that can go wrong and how can they handle the embarrassment when or if it happens. The fear of rejection is also real. Rejection always stings, no matter if you deserved it or not.
I've learned that and would tell others not to live with the "what if ..." fears. The bad news is leaks will happen, and you probably will be out in public when they do! I've also learned that the people around you take their cues from you, for the most part. So, if you panic or act nervous about it, so will they. If you act like it is just something you have to deal with from time to time, others will also. Most of the time I have ever had to make a change, the others around me never knew there was a problem at all. I went into a restroom with my purse, used my emergency supplies always with me, changed the appliance, and went on with my day.
The good news is that the occasional bad day won't kill you. Tomorrow is a new day. I am completely fine with myself. After all this time, my ostomy is something that is just there to me, like a left pinky or something. Unless I have to deal with it, I usually forget it's there. So, it is very possible to become comfortable with an ostomy. I imagine how long that takes just varies from and depends on each person.
There will always be people with bad attitudes. I just feel sorry for them. I know there is nothing wrong with me because of that. I am not perfect and have my issues sometimes, but the ostomy isn't one of them! If a man meets me but can't deal with it, I just feel sorry for him too. He obviously isn't strong enough or a real man enough to know a good woman who has dealt with her issues and survived. The rejection will sting. It always does no matter what, but not for long. Have a good cry or whatever gets it out of your system, then move on.
That was long-winded, so apologies for that. I just wanted to say that acceptance is possible, normal lives are our right to demand, and wish you and the others who responded long, good, and normal lives.

I just saw the spell check attempts at certain words. It was Crohn's disease that I had. Sorry.

Oldbiller1958: I'm a regular ostomate, not medically connected. Each individual has a different journey. So my time is not your time, you will adjust, listen to your body. I hope this helps you in some way. Lift your spirits. It never rains every day. The sun does come through. Be safe. Angelicamarie

Thank you, Angelica. I know as time goes on, it will become a little easier. Everyday things change and I will keep going forward.

All so true, well said.

My first surgery was all a blur and a nightmare for me. I had a hard time with acceptance and was in terrible pain for 7 months before it was discovered that my ileostomy had strictured. I then had to have another emergency surgery to fix that. The second time through was longer to heal but I accepted it better. I am doing okay now and have been maintaining my ileostomy pretty well on my own.

Hi Oldbiller. The answer to your question depends on many things. What’s “really comfortable” mean to you and the persons answering? Do you mean physically, emotionally, psychologically or all of those? Do you worry about “what ifs” like Bremen313 mentions? There are concerns like frequent changes, leaks, odors, skin problems, relationship problems, ignorance of some folks around us, where to sit at the theatre, how to adjust the seat belt in the car, how high to wear our pants and a few dozen other things. Actually, we don’t need to be ostomates to have a lot of these same concerns. Sometimes it’s the difference between reality and perception. Sometimes it’s expectations versus possibilities. I think it all starts in our heads which might have been hammered by our experiences. It could be a long haul; it could be not so devastating. It could be doable. Hopefully we provide some thoughts to help you make yourself better. Keep in touch and help us.
Respectfully,
Mike

I am thrilled to run across this forum; I think after 3 1/2 years I might be able to talk candidly about my experience. I had a brush with death post-surgery and it sure put a new slant on life. I'll take the bag and all of its ramifications over "a box any day". Guess I'll start at the beginning. Age 14 in the late 1960s, emergency appendectomy, Crohn's discovered during surgery, limited knowledge of treatments led to bowel resection after 30 days. In spite of constant runny bowels with bouts of bloating and pain, I wasn't going to let this control my life. Enjoyed scouting, hiking, swimming, mission trips to Guatemala, and being a camp counselor. Married, 3 kids (twins + 1), 2 subsequent bowel resections, 4 job relocations...a normal life with some manageable medical obstacles. Then the Big Decision presented itself. Yearly colonoscopies revealed a pre-cancer at age 59. Not "if" but "when". Recommendations included just watch and be ready to act when it happens or remove the colon with a permanent ileostomy. I actually relished the latter. That would give me some freedom. I had given up long hikes and walks. The pain of holding things in or the agony of leaking because I couldn't hold it was too much. Now I would have more control ... oh, the things I could now do! I had the full colectomy and things went as expected. The next night I was sitting up eating meatloaf. However, the next morning rocked my world, not to mention my family. The scar tissue from previous surgeries had caused leakage and I was rushed into emergency surgery with severe sepsis. I was in the ICU for eight days in an induced coma with a central line and a machine breathing for me. Miraculously I pulled through. I remembered nothing and I still shudder to think I lived over a week without a clue to reality. I won't bore you with further details other than to say 65 days in the hospital/rehab, 4 months out of work, losing 40 lbs, a scar that looked like the Grand Canyon, months of antibiotics, kidney concerns from scans with contrast, a fistula, and a hernia underneath my stoma causing further protrusion were my souvenirs from this ordeal. Fast forward to now. All of that is still preferable to the box that I narrowly escaped! I'm still working at 62 and wanting to retire. I battle leakage and I lost a good amount of stamina not to mention the ever-growing neuropathy in my feet. I had to scale back my gardening and I have difficulty mowing the yard but my new love is my electric bike. I've really enjoyed the freedom it gives me. Now for my new dilemma. I never had the rectal stump removed and the anal closure. I still can get rectal cancer and I'm experiencing more frequent mucous leaks. I think I've decided it's time and I see the surgeon next week to discuss. I'd like to hear some comments on having that done or not done. What were some ramifications in hindsight. Any thoughts of regret. Things I should bring up to the surgeon. Thanks for reading my story and I'm looking forward to hearing your thoughts.

Hi OstoVol.  Thanks for sharing your scary stories with us.  I'm not a medically trained person and, before my DX and treatments, I had no idea how guts worked, what the rectum was for and thought that whole area was just for nicknames to some jerks I knew.  After my bladder tumer was removed, the malignant colo-rectal tumor wes removed and I was reconnected.  Wow!  How lucky was I?  Well, maybe not.  I spent the next three years in the bathroom, took buckets full of Tramadol, and still suffered more pain than I ever imagined.  Since the colonoscopy I'm able to do almost everything I did before except, maybe, hit a golf ball 300 yards.  (Did I ever do that?)  I still have the rectum and experience the inconvenience at times of mucous discharge.  I'll live with it and keep my rectum. Just my opinion but what do I know?

Wish you the very best and please get more than one good, qualified opinion.

Respectfully,

Mike

Hello. I am also new to the group and didn't see a thread where we can introduce ourselves. Great to find a place where I feel people can understand me. My medical history is long but basically I had an ileostomy as of November 2017. Look forward to meeting friends and gaining helpful advice.

Welcome to all the folks who are new to MAO. There is much experience here and a lot of great information. Ask any question you have and someone will do their best to help you.

Welcome Irishileo. You’ve come to a good place. Not sure we have a place to formally introduce ourselves but you just did and I’m happy you’re joining us. If you want to give a bio and/or medical history I think you could go to the top left of the page and click on the icon to the right of the words “Currently online”. Try that and let us know.
Respectfully,
Mike

Thanks for the advice, Mike. My appointment is day after tomorrow and I was hoping to hear more from others who have had the closure or decided against it for some reason. I remember going to the initial appointment four years ago to discuss the colectomy. There was a lot of anxiety about the unknown then. It's not so bad this time because I have a choice whereas I didn't before. I didn't know about these sites then where I could get advice other than the typical medical sites that pop up when you search. Glad to know I have a safe place to turn.

Hi guys

I am new to the group but not to the bag! I've had my permanent ileostomy for 17 years now. I am going to speak with a lovely Indian lady (who is 72)....who just got out of the hospital yesterday with a ridiculously low level of info, just to pass on all the little tips and tricks I learned over the years. One thing they told her was that she cannot have any spicy food. I'm not a fan of Indian food personally, so I was hoping some of you guys may have thoughts on this? Her palate is obviously well used to spicy foods, she doesn't have active bowel disease (the hospital injured her colon during a kidney operation). I would be most grateful if anyone had info I could pass on.

Thanks in advance!

Ps- so many inspirational stories on here! Can't believe it took me 17 years to check this out lol

Big love, R x

Oh my, your name is breathtaking!! I had my first surgery on July 12th, 2017. It was a total emergency and I was within 3 minutes of passing away before the doctor stabilized me. I suffered with severe pain and could barely eat anything until February 17th, 2018 when a CT scan showed a serious issue with intestines ready to burst. Another emergency surgery discovered a strictured ileostomy and dangerously swollen intestines from back up for 7 months. I almost died again but with God leading the doctor's hands, I was blessed to survive again. He said it was the worst stricture and adhesions he had ever seen in his career! Now, I have "New Maxine" and she is working beautifully! I have been able to eat most anything I want, including spicy food albeit I have asked for medium spice because I haven't tried super spicy yet. I think if her system has been processing this type of food all her life, she should be able to eat it when she feels better. What she will have to keep in check is not to eat very late and know that spicy food will produce gas which can be somewhat annoying. I wish her the best and direct her to this site as it is so helpful.

Hello from Maine. I obtained my ostomy in March of this year. I have learned most of the adaptations on the fly. Others I have learned from this site. I think of it as my bridge between life and death. I prefer this side of the bridge. I had stage 3B rectal cancer. I just completed chemo, and starting radiation "Magic Mike" on Sep. 4th. My reversal surgery may happen around Jan., 2019. How are you handling this?

I'm doing okay now after I received New Maxine in February of this year. Being so close to death twice really makes you take a good look at your life and decide what is important. I have been on my own in my own apartment since June of this year and took on a part-time medical escort job with a local healthcare company. I like it and only work up to 20 hours a week as to not go over my retirement. I am feeling better every day. I have a surgery coming up on 25 October to replace C5/C6 disk in my neck. I am looking to finally have a thumb and forearm that is not numb. I hope you do well with your re-hook up. After my last surgery, I was told I and New Maxine will be partners for life. She is my lifesaver but God guided the surgeons' hands and I give all glory to God. He is the great healer and loves me unconditionally. For that, I am eternally saved and very grateful. Good luck, keep us all informed how you are doing okay. Pamela.