I have had my end ileostomy since emergency surgery on 10/29/11. I had my appendix removed after they found a polyp at the opening to my appendix. Emory University Hospital, Chief of General Surgery. I was very careful about where and whom I surrendered to cutting on my body, and I nearly died.
The doctor who I credit with figuring out that no, I in fact did not just have an ileus, had to tell my husband that he thought it would be a good idea to bring our daughters, (13 & 15), in to tell their mother goodbye as they did not think I was going to make it.
This Georgia heat is wicked and humid already. I am having a horrible time staying hydrated. I was seen by my regular gastroenterologist this past Tuesday as the skin under where I attach my bag was broken, weepy, and oozing, making it impossible to keep a bag on. I am not even going to mention the pain. I was given a prescription and some advice, (like don't sweat!) and tried to keep the bag off for an entire day, basically just sat in the recliner with multiple towels to catch the stool water running out of the stoma (which is constant with an ileostomy).
My gastro recommended that I go to Atlanta and see a colorectal surgeon that he says is phenomenal to see about reversal. The general surgeon who cut me open and washed out all of the contamination the Emory surgeon left behind said it would be a year before we talked about reversal.
I am at the 6-month and about two-week mark. I still cry every single day. I feel so broken. I am unsure of how to handle the summer without just staying in the house all of the time, which will take me out of my daughters' very athletic lives completely. They wanted me to go out to the pool with them today, and I had to tell them I couldn't because sweat just makes this shredded oozy skin worse. From the window, I watched them playing and frolicking in the pool today and laying out tanning, and had to slip into my bedroom and cry and dry my tears so they wouldn't see me.
I want this done, but who is right and how do I know who is right? How long should I wait? How many doctors did y'all talk to? General or colorectal surgeon? How did you know who to trust not to kill you.
notexpectingthis
May 07, 2012 12:32 am
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Pinky
May 07, 2012 6:20 pm
I really feel for you - I really do.
First of all because I hate humidity and what it does to my spirits and how it makes ostomy care that much harder.
Second, because I know how difficult it is to think about subjecting yourself to another "elective" surgery for the reversal. I stayed with my same surgeon for this - he is a general and oncology surgeon, and I trusted him as I've never trusted any other doctor (still do!)
I do believe your friend is giving you excellent advice - see at least one colon and rectal specialist about your reversal. In fact, see at least two. I received all kinds of advice/encouragement from my various doctors before and after my reversal about what an excellent candidate I was. In the end it didn't work out for me (too much radiation damage) - however I am glad I went through the reversal process just so I knew I had tried everything.
If you have a local UOAA ostomy support group you can begin there asking about possible surgeons. Then check with each one how many times they have done the surgery you need.
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First of all because I hate humidity and what it does to my spirits and how it makes ostomy care that much harder.
Second, because I know how difficult it is to think about subjecting yourself to another "elective" surgery for the reversal. I stayed with my same surgeon for this - he is a general and oncology surgeon, and I trusted him as I've never trusted any other doctor (still do!)
I do believe your friend is giving you excellent advice - see at least one colon and rectal specialist about your reversal. In fact, see at least two. I received all kinds of advice/encouragement from my various doctors before and after my reversal about what an excellent candidate I was. In the end it didn't work out for me (too much radiation damage) - however I am glad I went through the reversal process just so I knew I had tried everything.
If you have a local UOAA ostomy support group you can begin there asking about possible surgeons. Then check with each one how many times they have done the surgery you need.
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Laura59
May 07, 2012 11:07 pm
I truly feel for you. Numerous times I had to sit with a garbage bag next to me and paper towels to catch the output from my ileostomy when appliance wouldn't adhere. It sucks. It does. It will get better for you though, honest
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. My recent reversal was not elective, as the original surgeon who did my emergency surgery didn't know how to deal with the massive mess in there. So he diverted me and closed me back up leaving diseased and infected parts. I found an excellent colo rectal surgeon who took on my case. Please find one, maybe ET nurse can help you? I am. 2.5 weeks post reversal and tons of other work inside there, then a pulmonary embolism. I won't lie, it hurts like hell, i am exhausted, and tired of being home and not enjoying ife. Bowel movements are either going all the time, or having blockages. For now I am on a diet of "gruel". Lol. Is it worth it? Absolutely...... I can use the toilet again and let the skin around the stoma heal. I am left with about 6inches of colon, and numerous anastomosis sites to deal with, but I remind myself I am alive. There were times prior that I didn't care if I was, but I am n the path to health now. Suggestion to get referrals from people in local ostomy groups, etc. is a good one. Find someone very experienced. I wish you well and pray your path to health is a smooth one.
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. My recent reversal was not elective, as the original surgeon who did my emergency surgery didn't know how to deal with the massive mess in there. So he diverted me and closed me back up leaving diseased and infected parts. I found an excellent colo rectal surgeon who took on my case. Please find one, maybe ET nurse can help you? I am. 2.5 weeks post reversal and tons of other work inside there, then a pulmonary embolism. I won't lie, it hurts like hell, i am exhausted, and tired of being home and not enjoying ife. Bowel movements are either going all the time, or having blockages. For now I am on a diet of "gruel". Lol. Is it worth it? Absolutely...... I can use the toilet again and let the skin around the stoma heal. I am left with about 6inches of colon, and numerous anastomosis sites to deal with, but I remind myself I am alive. There were times prior that I didn't care if I was, but I am n the path to health now. Suggestion to get referrals from people in local ostomy groups, etc. is a good one. Find someone very experienced. I wish you well and pray your path to health is a smooth one.
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Primeboy
May 08, 2012 12:41 am
Hi Not. It seems your priority right now is to get your bag to work properly. Have you been in touch with a good ET nurse who knows ostomy products and procedures thoroughly? Did your hospital give you much instruction following your surgery? Did an ET nurse come to your home for several follow-up visits? For most people, sweating or swimming does not cause the seal to break. Something seems wrong with your experience and you should not be guessing about anything at this point.
On another note, I went to a university-based colorectal surgeon who had performed over 400 ileos with reversals. He had me wait 4 months for my initial reversal. I was 60 at the time. I think the length of the wait depends on individual health factors. Good luck! There really is light at the end... PB
On another note, I went to a university-based colorectal surgeon who had performed over 400 ileos with reversals. He had me wait 4 months for my initial reversal. I was 60 at the time. I think the length of the wait depends on individual health factors. Good luck! There really is light at the end... PB
notexpectingthis
May 11, 2012 2:52 am
Pinky, Laura & Primeboy -
thank yall so much for your kind words & encouragement. Primeboy - my stoma is flat against my skin & my straight from heaven WOC nurse thinks this is contributing to the problem. Of course they sent me home from the hospital uneducated & my home health care nurse had never taken care of a stoma before. It was a month before I found her & I thank God for Ms. Jane everyday!
I went to a colorectal surgeon this week who was very kind with three pages full of questions & he was very honest to say that I needed some tests before he could answer my questions thoroughly. He did take at precursery look at my colon through a flexable scope in his office before he said that.
When I went to the bathroom to clean myself up before the "talk" in his office I passed the air out in the toilet. The "faux fart" startled me! It has been so long since anything was going on down there!!! He warned me that I may pass some "mucus" by the time I made it home. When I pulled into the driveway I felt the sudden urge to go & tears started pouring down my face. It is sad the things we take for granted like the simple urge & ability to go to the bathroom!!!
Tomorrow morning I am going for a barrium enima CT. I have never had this done before & I am a little nervous. If this is the road to recovery - this girl is gonna walk it. I am committed to seeing another colorectal surgeon & the general surgeon who saved my life before I make a decision. I want to be all that I can be for myself, my husband & my daughters.
Love to yall!
thank yall so much for your kind words & encouragement. Primeboy - my stoma is flat against my skin & my straight from heaven WOC nurse thinks this is contributing to the problem. Of course they sent me home from the hospital uneducated & my home health care nurse had never taken care of a stoma before. It was a month before I found her & I thank God for Ms. Jane everyday!
I went to a colorectal surgeon this week who was very kind with three pages full of questions & he was very honest to say that I needed some tests before he could answer my questions thoroughly. He did take at precursery look at my colon through a flexable scope in his office before he said that.
When I went to the bathroom to clean myself up before the "talk" in his office I passed the air out in the toilet. The "faux fart" startled me! It has been so long since anything was going on down there!!! He warned me that I may pass some "mucus" by the time I made it home. When I pulled into the driveway I felt the sudden urge to go & tears started pouring down my face. It is sad the things we take for granted like the simple urge & ability to go to the bathroom!!!
Tomorrow morning I am going for a barrium enima CT. I have never had this done before & I am a little nervous. If this is the road to recovery - this girl is gonna walk it. I am committed to seeing another colorectal surgeon & the general surgeon who saved my life before I make a decision. I want to be all that I can be for myself, my husband & my daughters.
Love to yall!
Stories of Living Life to the Fullest from Ostomy Advocates I Hollister
