Ostomy | Voices from Girls with Guts
We realize that everyone has a different experience when it comes to J-pouch or S-pouch surgery, BUT there are some things we wish doctors would have told us beforehand.
Below are the experiences of some J-pouchers in our Forum.
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“I didn’t realize I’d be running to the nearest restroom just as much as before surgery!”
– Heather
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“It is not a cure.”
– Sarah
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“You need time and make effort to establish healthy gut microbiome after surgery so invest in good probiotics and foods. Eat really bland for awhile until your gut can heal and establish this. Dehydration happens really easily.”
– Jenn
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“Once home I didn’t realize I would have to relearn how to use the bathroom. I didn’t realize how badly it would burn my bottom to use the bathroom and would have to use some type of butt paste. My first full day home was the worst and I probably should have went back to the hospital because of how dehydrated I was. But with that being said I learned a new way of life and I adjusted just like most of us have to do daily depending on how we feel. I love my J-pouch and wouldn’t want my old life with my colon back. Gave me my life back.”
– Amy
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“I wish medical professionals knew that it’s not a large intestine and that that sucker is long gone. Also, the possibility that you have CD, not UC, and that it can appear after surgery. It’s “uncommon,” but still worth a mention for those of us who end up in that scenario.”
– Liz
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“Infertility caused by scar tissue. Non IBDers are always surprised when I tell them it’s a possibility.”
– Brittany
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“BE PATIENT AFTER SURGERY! It took over a year after surgery for me to feel my new normal again. It takes time, but is well worth it. Also, it makes a lot of funny noises and gurgles.”
– Karen
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“Mine was horrendous. I begged my surgeon over eighteen months, pestering him to give me back my ileostomy. Eventually he agreed and I am now happy living my Rosebud, my stoma. Never want to go back to the awful J pouch which made my life a complete misery. The pain and incontinence were horrendous. Good riddance!”
– Nina
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“My daughter loves her Jpouch. She does and eats what she wants. She has control and doesn’t get up in the night to use the bathroom. She goes to the bathroom 4-5 times a day. I know that’s not everyone’s experience but it can be positive. I think healing and success has a lot to do with age. The older you are the harder it is to adjust and recover.”
– Terri
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“Dr’s often say “cure”, but that is extremely misleading! Just because the diseased part is removed doesn’t mean a person will not ever have other issues. UC is an autoimmune disease which we all know there is no “cure” as of yet. One may have extra intestinal manifestations, such as another type of autoimmune disease, arthritis, and whatever else.”
– LeAnne
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“They told me to give it a year. It’s now been a year and 3 months, and they were right. I feel good, I can control my bm’s, and I can eat more variety now. That first year was tough, but the body is an amazing thing and recovery can’t be rushed.”
– Jennifer
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“I have had my J-pouch since October 2014. It is different than I expected in a good way. It has so far worked much better for me then having the ileostomy. I take metamucil each day, usually about 3 times a day. This seems to help food pass through much easier. I am still a little careful with some foods that I know don’t digest very well (dark lettuce, almonds/peanuts or nuts in general), however I am able to eat most things. My weight has gone up to a normal weight since losing it all while I was fighting ulcerative colitis. My J-pouch has helped improve my overall health and has made me feel like I live a much more normal life then I had before the J-pouch.”
– Stephanie
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“My life is so much better since I got my J-pouch in 1994 at the age of 12. I almost died from my ulcerative colitis and a surgery was my only option. Luckily, I was a good candidate for a J-pouch and didn’t need to live with a stoma all my life! My pouch has made it so I can eat most foods normally again. I take a probiotic everyday to help with bloating and cramping I get from the constant diarrhea. I wish others understood that even after J-pouch surgery it’s possible to still have cramping, bloating, and discomfort and until a few years ago I was nauseas everyday. Don’t get me wrong, my life is so much better since surgery but I don’t want to be discredited for my discomfort just because now I have a J-pouch.”
– Holly-Marie
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“[The] first year is rough….also, the rates of bowel movements per day really varies amongst people. I’m 12 years this May and have been pretty fortunate. Take time to figure out what foods do and do not work for you. Again, this I find to be a very individual response. Calmoseptine rocks, one should have a tube at home, at work, and small one in purse, you never know when you may have butt burn! You also still once in a while have an accident.”
– Gayle
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“For me, I thought it would make everything normal just like before. I thought it would be like the days before my large intestine became diseased. In some ways it has given me my life back. It’s not perfect nor will it ever be I still have good days and bad days with pain but I have control over my pouch I don’t have to worry about people seeing an ileostomy bag or about having leaks. In some ways it has given part of the old me back to me.”
– Grace
