Seeking advice: How long to adjust to ostomy?

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.

I've had my ileostomy for 10 years now. I was sick for 10 years before that with ulcerative colitis, so I had time to investigate and prepare myself for the surgery. It took me about 2, maybe even 3 years before I was really totally comfortable. But I wasn't too bad starting about 6 months after my surgery. I probably was the most self-conscious when I was at someone else's house or at a public area and had to use the bathroom, but none of it bothers me now. I show and train dogs, so I travel (a little less now only because my husband is ill), but I run almost every day with the dogs, I teach some classes, and I go to classes other places to get the dogs used to different environments. I am at places where I have to use port-a-potties sometimes and it doesn't bother me at all now. I now have no pain, no rushing to the bathroom, or worse, worrying about an accident before I get to the bathroom. I joke with my sister that it's actually easier in some regards.