Hi to all, I go for my ileo consult at Cleveland Clinic FL on Friday. I have cried all day, all day trying to think of what I might miss asking. I am driving myself crazy with this. Should I have it done or should I not? I'm still the one on the fence, trying to get the best education I can before going ahead. If you had to do it all over again, what would you be asking that surgeon and osteo nurse today? Please be honest and pray that God will help me through this and give me the answer when to do it, what to ask, and the willingness to accept the answer that is meant for me. Thanks so much. The closer the consult, the more scared I get, the more diarrhea I get, and the more I care. Thank you.
NEWLIFE 56
May 11, 2011 2:19 am
~traci~
May 11, 2011 2:45 am
When you allow things to bother you, you are giving them power over you. Keep your positive attitude, and keep moving forward - that's where the real power is! Prayers are with you as you make this choice for yourself and for your family! Just believe that this could be a chance for a better quality of life! Take care!~Traci~
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Great site..I have had an colostomy over 30 years..and have been thru skin rash around my stoma,hernias(2), leaks, odor control , needed clothing suggestions and this site has helped me with recommendations and many ideas worked!
I wish it was around 30 years ago. Thank you everyone!
Primeboy
May 11, 2011 3:14 am
Keep in mind that your personality type is causing you unnecessary anxiety. Do not tie yourself into a knot. If you trust your doctors, move on. I was told that my colon was 'precancerous" and that any delay in its removal was tantamount to Russian Roulette. No hesitation on my part since I trusted my doctor implicitly. Anyway, I want to reassure you that the quality of my life, in every respect, has improved since the surgery. I am not interested in looking back and second guessing myself. Get the best advice you can, but then move on. Life is worth living, as FJS used to say.
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jjMonaVie
May 11, 2011 10:51 am
The worrying is making you sicker. As it has been said 'trust your Dr.' and move on. The only thing I wish I had time to think about is where to place the stoma. Not sure there is a better spot but I did get to choose the approx area and at the time I didn't care.
I wish I didn't have UC, but I did, so nothing to gain by thinking about that. I now have no COL to be ITIS and very happy about that.
I know it is hard for you to imagine, but there are really no limits when you have a stoma. My Ileo has given me the ability to do so many things I could not do when I was sick with UC. Amazing.
Try to relax, find something(s) positive to put your mind and energy into and keep us posted on how you do. There will be a recuperating period and you will need to put in the 'want' to get better. I set little steps every day. Simple goals like, make 2 phone calls today, go downstairs for a visit with family, lay on side (I was very sick so every little bit counted). I am so GREAT now and a lot of times forget I have an ileostomy. The people I know forget all the time.
Find the products you like, that takes some time...like making sure you have all the right shoes...you may have to keep trying. Get some of the Na`Scent, I think there is a link in the classifieds. I just tried it and it is amazing!!!! Gives me great confidence to know there is no smell.
We'll be thinking about you.
I wish I didn't have UC, but I did, so nothing to gain by thinking about that. I now have no COL to be ITIS and very happy about that.
I know it is hard for you to imagine, but there are really no limits when you have a stoma. My Ileo has given me the ability to do so many things I could not do when I was sick with UC. Amazing.
Try to relax, find something(s) positive to put your mind and energy into and keep us posted on how you do. There will be a recuperating period and you will need to put in the 'want' to get better. I set little steps every day. Simple goals like, make 2 phone calls today, go downstairs for a visit with family, lay on side (I was very sick so every little bit counted). I am so GREAT now and a lot of times forget I have an ileostomy. The people I know forget all the time.
Find the products you like, that takes some time...like making sure you have all the right shoes...you may have to keep trying. Get some of the Na`Scent, I think there is a link in the classifieds. I just tried it and it is amazing!!!! Gives me great confidence to know there is no smell.
We'll be thinking about you.
Franicaa
May 12, 2011 12:42 am
After my emergency surgery, I was so glad to be out of all the pain and problems that my UC had caused!!! And a reversal is possible, so if you truly hate the stoma, you can ask for a J-pouch (if the ileostomy you're getting is temporary and you only have a subtotal colectomy). I felt exactly the same as you when I chose my J-pouch surgery, and a year later, I am still with Stomy (my stoma) and a healing and very painful J-Pouch (let me tell you my problems happen to less than 1% of people that have this operation!)
You will know after your consultation whether you will be able to cope with the change, but I'm sure if young babies born with stomas, teens like me who have had their stomas from the age of 16, and people a lot older than me can all cope, then you will find your inner strength and belief in yourself, and you will make the right decision for your lifestyle. It is life-changing, and when I had my subtotal colectomy, unfortunately, I didn't have a choice as I was walking around with UC without knowing it for a good 6 months until the colon came out and I was diagnosed! I managed to pick myself up from what a traumatic experience I'd had, but as you're going into this with eyes wide open and all the knowledge of it beforehand, I'm sure you'll know for yourself what the right choice is to make!
All the best of luck to you x
You will know after your consultation whether you will be able to cope with the change, but I'm sure if young babies born with stomas, teens like me who have had their stomas from the age of 16, and people a lot older than me can all cope, then you will find your inner strength and belief in yourself, and you will make the right decision for your lifestyle. It is life-changing, and when I had my subtotal colectomy, unfortunately, I didn't have a choice as I was walking around with UC without knowing it for a good 6 months until the colon came out and I was diagnosed! I managed to pick myself up from what a traumatic experience I'd had, but as you're going into this with eyes wide open and all the knowledge of it beforehand, I'm sure you'll know for yourself what the right choice is to make!
All the best of luck to you x
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beatrice
May 12, 2011 5:30 pm
Your consult is with an Ostomy nurse as well - that is good.
With the ON, talk about the stoma placement -- it's very important. Where do you wear the band of your pants, etc. My placement is superb - I can wear anything (except those low slung jeans which are not for my age group anyways) and no one knows I have an appliance. Not that I care -- but just to let you know that it isn't visible.
You'll feel weak after you get home - make sure you have help around, or frozen meals ready, etc. Some people seem to be ready to resume what they did pre-op at about 4 to 6 weeks. It took me more like 3 months - but my health at the time of the op was bad. Plan on giving yourself 6 weeks of rest if you can. Have some books around, music you like, DVDs and such.
Deep breath - live in the moment.
"If you had to choose, would you do it again" ... don't think there are many of us ostomates who really had a choice. It was a life-saving or quality-of-life measure for most of us. It happens, you go on - day to day.
Best of luck to you.
With the ON, talk about the stoma placement -- it's very important. Where do you wear the band of your pants, etc. My placement is superb - I can wear anything (except those low slung jeans which are not for my age group anyways) and no one knows I have an appliance. Not that I care -- but just to let you know that it isn't visible.
You'll feel weak after you get home - make sure you have help around, or frozen meals ready, etc. Some people seem to be ready to resume what they did pre-op at about 4 to 6 weeks. It took me more like 3 months - but my health at the time of the op was bad. Plan on giving yourself 6 weeks of rest if you can. Have some books around, music you like, DVDs and such.
Deep breath - live in the moment.
"If you had to choose, would you do it again" ... don't think there are many of us ostomates who really had a choice. It was a life-saving or quality-of-life measure for most of us. It happens, you go on - day to day.
Best of luck to you.
nogutz
May 19, 2011 11:12 pm
Hi, I think it's like getting your doctors in order. See, back in 2004 after my first surgery, I thought I was all healed up. A couple of trips to see the surgeon, scoped every year. Then in 2007, rush to the hospital, emergency surgery, and 4 months later, I leave the hospital. This time, I am on a fistful of pills. To find out that I should have been on these meds from the beginning, something to do with my autoimmune system. So make sure you talk to your gastrologist. He is your life support, as well as your surgeon. I find that I now have a medical team of doctors, an ET nurse, and others have other specialists. So get to know your team and be in their face until you understand everything, as well as this site too! Good luck.