Seeking Advice on Stoma Irrigation Experience

I am near an impasse on finding a wafer that will work with my retracted stoma. My surgeon says it is too early to consider a revision, as I have had 2 surgeries in the last 7 months, the most recent in January. He, and others, recommend irrigation. I am Nazi stubborn, refusing to try. My caretaker says I am unreasonable. The truth is, I fear it won't work for me, fearing that I will have stool coming out anyway... I just don't trust it. I fear it will be too much work (so I would rather empty my pouch 5-9 times per day every single day!). I am stubborn and fearful to try anything that may make me uncomfortable. Yet I am miserable and out of my mind not being able to wafer, and so frustrated that my doc has nothing for me. Life is bad, despite beating my cancer.

She tells me that folks who do it feel really good afterward, they have less fatigue, feel less bloated, and have a better appetite. She says I can still wear a pouch or mini pouch if I want to feel more secure. She also says if I am camping or fishing or away from home, on those days I can pouch and revert to irrigation at the end of my trip. She says that if I am set up to irrigate each morning, it takes 10-15 minutes for the water to go in, and roughly 30 minutes to empty while I read, browse Instagram, then I am good to enjoy my freedom for the day. She says it is as close as I can get to a normal life. She says she will also help me start the process, help me irrigate until I get used to it.

If you are irrigating, would you please tell me about your experience?

G-Day BlazeHuber,

So let me get this right, you're too scared to try something that will take you approximately 1 hour. Yet you're happy to empty your bag up to 9 times a day. Try it; if it doesn't work, go back to 9 times a day.

PS. I just read your notes; you drink 1/2 a gallon of milk a night? It's a wonder you don't shit cheese.

IGGIE

I perceive some of your communications as filled with shame and judgment, more appropriate for Instagram. I was asking for a response from others who irrigate to tell me what their experience is. I am open to hearing about their experience. The shame and judgment are not useful.

I am not happy about any of my problems, FYI.

Hey there, so from someone who had 5 surgeries in a year, one every 3 months, and two being open abdominal surgeries, and the last one I was left open. I am on ostomy number 6. In another month or 2, they can do a revision. The earliest they can redo a stoma is 3-4 months from when you had the last one done. So it can be done. Have you tried the liquid skin protectant in the meantime to protect the skin? And as long as you have a colostomy and not an ileostomy, why not try irrigation? If there is a chance it would fix your problem, why not? And it sounds like your doc did have something for you, just maybe not the answer you wanted. Too much work comes in, seriously. You have an ostomy, and that takes work every day. But you should be happy you beat cancer; that is something to celebrate. I hope you have come to terms with having an ostomy. You fighting it every step is only making things harder for you. I hope you get peace.

I don't irrigate because it seems like more trouble than it's worth for me. But I have a urostomy in addition to my colostomy, so it won't free me from tending to ostomy bags, and I get 7 days of wear on my colostomy wafer.

I can be really stubborn, but in your situation, I would give irrigation a try.

I suspect your resistance has more to do with the aftereffects of having had cancer than the irrigation itself. My surgery last August is believed to have cured my cancer. But I did not feel the relief or happiness I would have expected. I felt angry at my body for having done this to me.

I'm still struggling to trust my body and my health. I'm still trying to regain the health I had before. I think it's natural to resent this reminder of your cancer. But recognize it for what it is and try to make decisions based on logic, not emotion.

Many years ago, when I was struggling emotionally, a friend advised me to "act as if." Proceed as if you are happy to irrigate, and eventually, you will convince yourself it's true. You'll be on here telling everyone how great irrigation is and how it's freed you from all the bag changes.

Living with Your Ostomy | Hollister

Although your issues do not pertain to me (ileostomy here), I appreciate all you have shared. My curiosity about the irrigation method led me to YouTube, where a young man actually videotaped his whole process. Education about our particular issues is key, and this website has led me to do more research about shit than I care to divulge - but it has helped me mentally more than I thought it could.

I hope you can quickly find answers/relief for your current issues…

Our own MAO Bill Withers has written extensively on this site about irrigation…and is, in my opinion, the epitome of empathy - you may want to take a look at his posts.

“I saw that worrying had come to nothing and I gave it up and I took my old body and went out into the morning and sang.”

🎶🎶🎶 gonna be a bright, bright sunshiny day 🎶🎶🎶. jb

👏👏👏 So well said…. Whenever I get hateful of my bag, I think of all you warriors out there that are tending to 2 bags. Double the trouble of life issues and twice as hard to keep positive thoughts in one's cranial iCloud. As is often said… we can choose to be happy or sad… it seems sometimes this is the only real thing we have a choice about. Thanks for all your kind words. jb

Takes me 30 mins every morning, and then that's it for the day. In that 30 mins, I can shave and shower, etc. Very liberating.

Sounds to me like you yourself are the problem. You have a possible way to fix your issue, and you won't do it. If you're not willing to help yourself, how can you expect others to help?

I read all of your replies. This comment in particular reached me. I will really think about what you have said, Susan. Thank you.

Have been irrigating for 9 years. Every 48 hours before bed. Takes approximately an hour. Once water is in, about 6/7 mins I sit and read emails etc. whilst shit goes in the toilet as it should. Great feeling knowing I have freedom for 48 hours. Half my large colon was removed, but still able to last 48 hours. I know someone who irrigates every 3 days. You have nothing to lose and all to gain, try it and allow time to get used to doing it. Good luck.

Thank you for writing this.  May I ask you to tell me about your experience with this at the beginning?  

I can't offer advice on irrigation but I think I can safely say that none of us would have chosen where we are. You beat cancer and that is awesome, truly.

Stubbornness runs in my family too however being belligerent to a fault doesn't help us. We have to choose to change. I would like to see you get some relief and peace. Please consider it.

I had 4 surgeries in 2 years.  Primary resection for rectal cancer resulted in ischemia, anastomosis failed, so 11 months with an ischemic bowel I went to Cleveland for a second resection.  Reanastomosis was not possible, so I came back with a colostomy.  Developed a prolapse and hernia right away, moved stoma, got ill with an evil cough for weeks, so I developed a worse hernia and prolapse, hence the 4th surgery in Jan.  I have had many other complications.  I never feel good.  I am curious why you had so many surgeries in such a small space of time, if you are comfortable sharing? 

Hi, slightly nervous to start. Instilling the water seemed daunting but was actually quite easy. For me about 1 1/3 litres. Start with less in the beginning. Put the water in slowly, works better. Once that part is done the rest is easy, just a case of waiting for output. Keep everything you need within reach (no stretching for things) or you will end up pulling sleeve out of toilet and shit on floor. Most irrigators have done it at least once. Great feeling getting it right, AND if you don’t SO WHAT,  you get output, wear a pouch until your confident. After that you can use a plug or a paediatric pouch.

Oh dear Iggie🤭