Facing Multiple Surgeries and Emotional Struggles with Ileostomy

I am 66 years old. Last July (2023) I was diagnosed with Crohn's, diverticulosis, and a stricture. My gastroenterologist sent me to a larger hospital complete with the leading colorectal cancer surgeon in the area, perhaps the whole mid-Atlantic region. At first, I panicked about him being a cancer doc but then learned he did all surgeries related to the digestive system. Surgery to remove the stricture was Oct. 5. They didn't remove the stricture. The inflammation was so bad that they couldn't even get close to the stricture. The inflammation was also pushing against my left ureter, so a urologist was called in to place a stent. Surgery ended with a colostomy to allow time for the inflammation to go down. There were many trials with the colostomy, but I'll skip them as they are now resolved. In March, my stoma prolapsed and began to bleed, filling the bag almost halfway with blood. Yes, it was coming from inside the stoma. On March 15, I had another surgery. This time they replaced the stent, removed the stricture (7 cm), reconnected the colon, and according to one doc on the team "roto-rootered that bitch," then gave me an ileostomy.

I am scheduled for a take-down on Aug. 5. I am scared more than any surgery I have had. I have read so much and know the difficulties that I might encounter. I am cognitively aware that not everyone has the same problems, if any at all. However, emotionally, I'm devastated. One of the aforementioned difficulties was barrier leaks. There were times my bag needed to be changed three times a day, and I only can see that I'm going to have bowel leakage post-op. I know that that is a small possibility but still...

Iggie, I have read many of your posts. I thank you for them. You gave me the courage to tell the doc that if he gets in there and thinks that a reversal would not be best for me, I could live with the ileostomy for life. He said that there is a 98% chance of a successful reversal and that he will do everything possible to make it so. He also agreed that if I needed to keep the ileostomy, he would move it. As of right now, my stoma is just under my left intercostal rib. The only pants I can wear are leggings because the stoma is exactly where my waistbands sit.

Out of curiosity, Iggie, do you take Imodium? I have been with the ileostomy and I found that if I forget one, the bag is filled with liquid poo and it takes a day or so to get back to pudding consistency.

One thing, about a week ago I melted down. It was the first time that I allowed myself to grieve. It wasn't just some tears and sobbing. I was in full crying jags for over two hours. Hubby just held me the whole time. He's my hero. I only started emptying the bag in April. I couldn't do it, I was too disgusted. He still changes my bag and gives me shots when I need them. He's a retired paramedic, so I have my own personal medical team living in my house. ;)

I thank you all, every one of you that have taken time to write about your experiences and your trials. Any thoughts or advice from all are very welcome.

My advice... stop worrying about stuff that hasn't even happened yet or comparing things that aren't even related (bag leaking and leaking after reversal), geez. Your mindset plays a huge role in your outcome.

Hello Auntipasta

Your paramedic husband is a wise person in that he sees many different types of trauma...

And trauma can be something held within the body over time - not just a current reaction to a live/new occurrence.

You have mentioned three occasions of continuing release lately... I feel this may help greatly.

Crying - deep from the heart - is good for the soul :-)

Sometimes our own expectations of how we feel we need to cope and be able to take all within our stride is not necessarily realistic.

One does need to 'allow oneself' the acceptance of things.

Sometimes, surrounded by those who are loving and extra capable can cause us not to readily take responsibility for our emotions.

It's okay to feel weak - it's okay to feel extreme distaste - but there comes a time when one can be kind to oneself... ease down and understand we are broad enough and the little core of us is good enough to handle what we are called upon to experience.

Self-denial is a destructive trait that comes with the territory - most get over this fairly quickly - some need to 'know the denial' before accepting it.

Hello

I wish you all the luck in the world... And I figure you will become more comfortable with stuff when you are able to let it out - let go - and find the door handle to really feel gratefulness for what is.

[Your worst fears take energy to nurture... perhaps a shift of focus may come - don't be too determined not to allow yourself a little easement... eventually, you will be relieved..., and quietly, ever so happily, you will experience the sunshine after the thunderstorm.

BW

~ ~ ~ Jayne ~ ~ ~

PS Share this reply if you feel able - with your husband - and he will help you to discuss it... if not directly, perhaps through association with others.

Many of us are super confident on the outside and crumbling on the inside... You may find your inner strength will greatly surprise you - and others - over time.

Virtual Hug

xx

J

I'm 66 too. Your surgeon will work from experience. No matter the result, he did what was in your best interest.

As far as poop goes... it's just digested food leftovers. It's brown (most of the time). At first, I was careful about squishing the little poo chunks around, so my bag would lay flatter. Now, I manhandle those chunks and turdlets. Do it enough, you'll get used to it, not grossed out by it. Bravo to your husband.

Good luck.

G-Day auntipasta, You asked if I take Imodium, no I never have. I don't mind if my poop is liquid or not. I find it easy to empty when liquid and when it's more solid I just add some water to wash the bag out.

I am currently on a Carnivore Diet and I find this gives me a more liquid output which I don't mind. Your poop will respond to what you eat, so just accept whatever the consistency is and don't worry about it.

Whichever way this goes for you, I hope you are able to accept and cope with it. If a reversal doesn't work for you, you can still go back for an ileostomy.

Everyone in here with a stoma is able to still live life to the full; a stoma is a life changer that gives you back your freedom.

We are all behind you whichever way you go. Regards, IGGIE

Stories of Living Life to the Fullest from Ostomy Advocates I Hollister

With all the talk on here about the carnivore diet, I decided to look it up. One of the threads that popped up was a guy who tried it; his story was hilarious, and he only lasted three days on it. He cheated on the diet with two little things that aren't normally all that special; he swore they were the best things he had ever tasted in his life. 😂

So what were the two things, Alex?? IGGIE

Hello. Your post choked me up a bit! I suffered bouts of grief as well during my process of unexpected emergency colostomy (May 28, 2023) to reversal (January 30, 2024) and even now sometimes thinking back on it - so I can totally relate. I was also very scared of the takedown, but it went great - actually much easier than the emergency surgery for the colostomy. My bathroom habits are completely back to what they were pre-colostomy.

It sounds like you have a wonderful medical team and family - just think about the 98% chance it will go great! I will send you prayers and positive vibes your way!

Your last remark reminds me of a duck or swan, so serene on the outside but paddling like crazy under the water!

I'm just going by what the article said: that not much seasoning is allowed on that diet except for salt. 🤷‍♂️ The first thing he said was like two bites of salad with dressing, the best thing he ever tasted. The second thing was a baked sweet potato, the best thing he ever tasted. 😂 He said he ate the whole thing and stopped the diet right there. His wording was hilarious.

;-)

I take 8 Imodium a day; sometimes I forget, and things get very liquid. I take 2 Imodium around 2 hours before bedtime; it firms everything up, and now I rarely have leaks. I also changed to a much more substantial sealing ring. Four months into my stoma life, and I have learned so much from this forum.

Thanks, all.

Thanks, Iggie! I too like when it's more liquidy as it is much easier to empty and clean up afterward. However, my surgeon says that the bag contents should be the consistency of pudding. I guess pudding is better than modeling clay.

Thanks! I really needed that affirmation that things will go well.

So here's where I am right now. My surgery of August 5 was canceled by the anesthesiologist. Canceled at 4:56 on a Friday afternoon just 3 days before a 7 a.m. Monday surgery. He said that I needed to have an EKG and a medical release from my primary. Never mind that the surgeon said I didn't need either as I had just had an EKG just 2 weeks prior and I didn't need the release because I am under constant care, often seeing at least one of my doctors every week. Sometimes I go and see 4 different doctors a week.

I did go to my primary anyway for the release and EKG since I... well, I had to if I wanted surgery. Needless to say, I was (and to a certain degree still am) super pissed. I get it though. But, I don't get it. Even my primary doesn't see me as often as Gastro and Urology. One would think they have all that stuff.

Anyway, my surgery is rescheduled for August 23.