Ileostomy Reversal...OMG!!
Comments
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illeostomy reversalkristasplace said:Dilation
Yes, i may need another dilation. I had three prior to the surgery. The miralax, or something seems to be working very slowly. I totally know what you mean about sitting on a fist. It's horrible. Today was a very bad day. Six percocets already, and it's barely night time. I'm in for it tonight. Yesterday was better, the day before that, hell. I see my primary doc on Thursday, and i'm going to ask her for an arsenal of drugs to experiment with. I'm sure now that i have recracked my tailbone, and that pain is just the most horrible thing in the world. It won't stop, even with the percs, once it gets going from straining. I never in the two years since my diagnosis asked "why me?". Now i'm beginning to wonder! Something spectacular better come from all of this!
Thanks again, guys!
Many hugs, and much love!
Krista
I am sorry to hear what you are going thru; I am 18 months from my ileo reversal and feeling finally pretty normal after many days of agony with a body that didn't know how to behave. I felt like giving up too. Just know that it will get better, it just takes far longer than they tell you. There are some things you must do to help your body learn it's new behavior: for constipation......... walk alot, do NOT take pain meds at all except for advil/aleve because they alone can cause the terrible constipation, drink two or more quarts of water a day, take at least 20 grams of fiber a day, take prebiotics and probiotics. Check out the MD Anderson website re retraining your bowels.
I hope by now you have seen a doc who can diagnose the pain and other problems you think might be contributing to the situation. Sounds like you are in San Diego if you are seeing Dr. Ramamoorthy...have her paged, send her an email, don't let them give you the run around.0 -
I also Had a wound vac for 5 weeksFAPMom47 said:I am so sorry for your pain
I know how you feel, I had to go to the er. And I went there for rectal pain and they did blood work,x-rays and an I V. Well after waiting for 3 hours I did not find out until I left they had me down with abdominal pain, which was wrong. I have a witness as to why I went and I have called and left alot of messages but no one has returned my call. I had the opposite of your problems, I have an ileostomy that is runny. We are not able to thicken it at all. It's permanent and for the last 4 years it's been like that. I will not go to the er close to home anymore, if I have to drive 2 hours I will go where they know what they are doing. Hope you get to feeling better.
MANY HUGS AND PRAYERS
JACKIE
I also Had a wound vac for 5 weeks and it helped when the wound gets to
a certain point they will take it off and do the dressing to finish the healing
that is what I am doing now my wound started at 1 1/2" long and 2 1/2"deep
that happened when they took the staples out.0 -
painful potty problems The PPP's
I hope your issues are better now. The last few days I've been in the potty alot myself. I've started keeping a food journal, maybe I will be better able to find my trigger foods. Some foods I miss but not worth the pain. Feeling like you have to go with all the pressure and right now is hard to get used to. The colon doesn't like to be operated on. I've had alot of relief from lomotil. Some days I know not to take it and let nature take her course so I don't block up but I get about 6 hours where I'm not in the bathroom. Talk to your surgeon. When was your takedown? I'm wanting to get a second opinion, if they can't make the potty issues better I may chose to have the bag back on. No more pain, no more sitting in the bathroom for long periods of time and I could eat hopefully anthing I wanted with out consequence.0 -
Krista....tiny one said:painful potty problems The PPP's
I hope your issues are better now. The last few days I've been in the potty alot myself. I've started keeping a food journal, maybe I will be better able to find my trigger foods. Some foods I miss but not worth the pain. Feeling like you have to go with all the pressure and right now is hard to get used to. The colon doesn't like to be operated on. I've had alot of relief from lomotil. Some days I know not to take it and let nature take her course so I don't block up but I get about 6 hours where I'm not in the bathroom. Talk to your surgeon. When was your takedown? I'm wanting to get a second opinion, if they can't make the potty issues better I may chose to have the bag back on. No more pain, no more sitting in the bathroom for long periods of time and I could eat hopefully anthing I wanted with out consequence.
How have you been doing lately with your issues? is anything getting any better? haven't heard from you
Hugsssss!
~Donna0 -
Dietscouty said:It does get better Krista
I had a colostomy for 26 months and didn't really have constipation issues once I stopped taking the pain killers (that was over 3 years ago). I also got some great advice.....want to poop soft, eat soft, if you eat hard foods your poop will be hard. The water will help and it's good you stopped the Lucerna (it has all sorts of stuff in it that may upset things). Once you reteach everyone what they have to do you'll probably be able to. Remember you had part of an organ removed and what's left has to learn to redistribute what the cells do. It does take time.
Now I find that the only time I get constipated is when I go out of town and eat processed and chemically altered foods. I have much more of an issue with diarhea but have learned what sets that off mostly too.
Lisa P.
Hi there - I am a stage 4 rectal cancer survivor and also had an ileostomy reversal (feb, 2009), but since then, I was redigonsed and the cancer mets into my liver (2 tumors). I had a liver resection, underwent more chemo, etc. I am now Cancer free, but am still trying to find my footing mutirtionally, so that I am not going anywhere from 4-10 times a day. My last chemo was March, 2009;
What is your diet like...what do you eat that helps regulate you? I went to a nutritionalist, but she was straight out of college and basically xeroxed a nutritional worksheet and called it a day. I am hoping someone out there who has had a similar experience can assist me in finding the right foundation for my diet. I take a multi-vit and probiotics. About 9 inches of my colon and 1/2 of my rectum have been removed, so there is little to no storage capacity for BM's. Please advise re: your diet plan. Thank you in advance.0 -
New Bowel Takes Time
Hi, Krista
We've never spoken, but I read your posts and was concerned about the pain you were having.
I never had an ileostomy or a temporary or permanent colostomy - I was dead set against it. I told 'em all, if you have to do a colostomy, then don't wake me up. I was scared to even do a temporary, because I feared it would become permanent, because I had so little margin to work with in the rectum - I got by with just millimeters literally...I was lucky or so I thought.
The next 2 years were sheer agony and I thought if Life is going to be like this, forget about it. I see now why they do temps - so the colon can heal. I had alot of radiation damage too and my doctors said my insides looked like fried bacon. So, it was very painful. I used to have to get in very hot baths to kill the pain. And I hurt so bad, I could not even walk during those days - so sore from the pain and you would be raw from all of the trips to the bathroom - I found a hot bath bathed those tissues and using some of those creams also helped.
I'm 5 years out now and it has taken that long "to heal" and get things to where they are workable. The way it was explained to me was that the NEW BOWEL has to re-learn who it is and how to operate - after all we reworked the original plumbing.
-Craig0 -
Wow, I'm getting
Wow, I'm getting nervous.
First, let me say to Krista and others I hope you are feeling better. Cancer sucks and it's not fair that even when it's gone it continues to rob us of our quality of life.
I'm about a month away from reversal and reading these post makes me wonder. Not whether I want to do it - I still do - but how bad it will be. Has anyone had a good experience? I had my ileostomy on Dec. 1 , it will be almost exactly 6 months when it comes off. Does that matter? Is it worse when it's been much longer? From the day I came home with it I've been looking forward to getting it off. Like Sundanceh I just got by as far as the margin. It was very close to the anus.
The night I came home from the hospital I searched for "ileostomy reversal" and found this site and thread. I read it and was a bit concerned but it was a while off at that point. I came back to read it occasionally. Now it's getting closer and I am thinking about it more. I hate this thing. I woke up again this morning to find that I had rolled over in my sleep and the seal broke. Nice. That hasn't happened in a while but when it does it sucks.
To be honest, my overall experience has been somewhat puzzling to my doctors. First of all, the discovered the cancer at the same doctor visit when they discovered I had a bad aortic valve and aortic aneurism that needed to be repaired ASAP. Had to have that done before they would do the caner surgery. I also had chemo/radiation and had very little reaction to it. Just a bad rash from the radiation, the chemo didn't bother me. I had a full clinical reaction to the treatments, meaning the cancer was gone, which they said happens but is pretty rare. Through the surgeries, recovery and subsequent treatments, I have really had few complications. Never lost any hair, never got sick or even nauseous from the chemo. My oncologist wondered out loud whether I was taking the pills. I start my last of 15 weeks post-adjuvent chemo this week. But now I'm getting nervous about the reversal.
Can anyone offer any positive experiences about the reversal to those of us looking forward to it?
Thanks and I hope all are well.0 -
This comment has been removed by the ModeratorGixxerman said:Wow, I'm getting
Wow, I'm getting nervous.
First, let me say to Krista and others I hope you are feeling better. Cancer sucks and it's not fair that even when it's gone it continues to rob us of our quality of life.
I'm about a month away from reversal and reading these post makes me wonder. Not whether I want to do it - I still do - but how bad it will be. Has anyone had a good experience? I had my ileostomy on Dec. 1 , it will be almost exactly 6 months when it comes off. Does that matter? Is it worse when it's been much longer? From the day I came home with it I've been looking forward to getting it off. Like Sundanceh I just got by as far as the margin. It was very close to the anus.
The night I came home from the hospital I searched for "ileostomy reversal" and found this site and thread. I read it and was a bit concerned but it was a while off at that point. I came back to read it occasionally. Now it's getting closer and I am thinking about it more. I hate this thing. I woke up again this morning to find that I had rolled over in my sleep and the seal broke. Nice. That hasn't happened in a while but when it does it sucks.
To be honest, my overall experience has been somewhat puzzling to my doctors. First of all, the discovered the cancer at the same doctor visit when they discovered I had a bad aortic valve and aortic aneurism that needed to be repaired ASAP. Had to have that done before they would do the caner surgery. I also had chemo/radiation and had very little reaction to it. Just a bad rash from the radiation, the chemo didn't bother me. I had a full clinical reaction to the treatments, meaning the cancer was gone, which they said happens but is pretty rare. Through the surgeries, recovery and subsequent treatments, I have really had few complications. Never lost any hair, never got sick or even nauseous from the chemo. My oncologist wondered out loud whether I was taking the pills. I start my last of 15 weeks post-adjuvent chemo this week. But now I'm getting nervous about the reversal.
Can anyone offer any positive experiences about the reversal to those of us looking forward to it?
Thanks and I hope all are well.0 -
Krista- I'm having sympathy
Krista- I'm having sympathy pains right along with you girl. Oweeeie!
After reading about all the post-ilesotomy troubles here and at the Colostomy Associaition Board, I was cared to death of getting a reversal. As much as I hated the poo bag, once my anorexia was starting to subside and we managed the out put, I was "OK" with the bag.
My surgeon was adamant about reversing during surgery for a bowel obstruction.
My post-reversal issues really only lasted about 2-3 months. At first, I was maybe having a BM every 2 days. It would take a while, and be painful. Alternated with "running to the john". I resorted to Depends and those pads they use in the hospital over my bed sheets. I had 2 bedpans on the bed with me so I could do a quick change- no time in between.
Every evening I'd have a bout of butt cramps - sharp pains that would eventually subside.
Yes it sucked, but it did get better and a lot sooner than I anticipated.
Like other responses, you will need to find that magic potion of what works for you in terms of water, diet, supplements. I really didn't do anything special, I'm really bad at taking meds and supplements consistently...I do recall that anytime I had good italian food, and the bread dipped in olive oi, i had a "normal" movement!
OK, enough poo talk. I so hope your pain subsides soon....hang in there, it WILL get better
Peggy0 -
Ok People,pluckey said:Krista- I'm having sympathy
Krista- I'm having sympathy pains right along with you girl. Oweeeie!
After reading about all the post-ilesotomy troubles here and at the Colostomy Associaition Board, I was cared to death of getting a reversal. As much as I hated the poo bag, once my anorexia was starting to subside and we managed the out put, I was "OK" with the bag.
My surgeon was adamant about reversing during surgery for a bowel obstruction.
My post-reversal issues really only lasted about 2-3 months. At first, I was maybe having a BM every 2 days. It would take a while, and be painful. Alternated with "running to the john". I resorted to Depends and those pads they use in the hospital over my bed sheets. I had 2 bedpans on the bed with me so I could do a quick change- no time in between.
Every evening I'd have a bout of butt cramps - sharp pains that would eventually subside.
Yes it sucked, but it did get better and a lot sooner than I anticipated.
Like other responses, you will need to find that magic potion of what works for you in terms of water, diet, supplements. I really didn't do anything special, I'm really bad at taking meds and supplements consistently...I do recall that anytime I had good italian food, and the bread dipped in olive oi, i had a "normal" movement!
OK, enough poo talk. I so hope your pain subsides soon....hang in there, it WILL get better
Peggy
Remember,
Ok People,
Remember, everyone is differnet! I too had a reversal this past Septmeber, but I had none of the problems like Krista! Yes I admit the first 2 week I could easily poop myself as I was retraining the sphincter muscle, but it did get better with time. jsut like any abdominal surgery it takes time to heal and get things working again.
I personnaly went on an eveyday coctail of miralax until it became more regular. If any body needs to hear about more, just let me know. I don't regret my reversal for one mintue!
Kathy0 -
Hi Krista,khl8 said:Ok People,
Remember,
Ok People,
Remember, everyone is differnet! I too had a reversal this past Septmeber, but I had none of the problems like Krista! Yes I admit the first 2 week I could easily poop myself as I was retraining the sphincter muscle, but it did get better with time. jsut like any abdominal surgery it takes time to heal and get things working again.
I personnaly went on an eveyday coctail of miralax until it became more regular. If any body needs to hear about more, just let me know. I don't regret my reversal for one mintue!
Kathy
Hi Krista,
I have not had an Ileostomy but I have had some painful bowel movements from the resection. I know the small drops, frequent visits, uncertainty, urgency issues, and the bad feeling of not having the normal bathroom visits. Please remember that this will get better. Just keep focused on when things get better. I kept repeating to myself "I can do this..." Give your body the rest it needs. Also, it has been important for me to eat regularly that is 3-6 small meals a day. Apples, prune juice, homemade muffins with flax, oatmeal, pumpkin, raisins, applesauce etc. I hope some of this helped - I am better now than I was 6 months ago. Hang in there. It will get better. Give your body the time it needs to recover. Remember - You can do this.
--0 -
I too had a reversal just
I too had a reversal just this past March 24th, was in Barnes hospital 3 days and sent home After 4 or 5 movements of mucus and some soft stools, i too suffered the severe pain or feeling of the urge to have a movement and i did have several accidents, at first, then we read about usingfiber in the diet, and taking Imodium on a regular basis, i also use an overnite mens pad just incase i have an accident, i am back to work full time as a corrections officer at a county jail, I hated having my Ileostomy, i felt it was the worse 9 months of my life aside from all the chemo and radiation, and i did have second thoughts about the reversal, but im sure with time my body will hwal and i'll adjust just fine0 -
colostomy reversal
Hi Krista and everyone else!
I had a colostomy reversal 2 years ago and am having terrible rectal pain problems now. Though for the first year after reversal I just had the usual problems of going to the loo a LOT! But no pain. 2 years on I'm experiencing worsening pain which my doctors say is caused by the scar tissue and effects of radiotherapy. The pain is excruciating and no pain killers touch it, so I am wanting to go back to having a colostomy.
Anybody else having this problem?0 -
I have had half my rectum and 10 inches of bowel removed then had colostomy reversal. My bowel and rectum have been stapled and stitched back together and Ive had radiotherapy to the area. The join is very low down in the rectum.Gixxerman said:Wow, I'm getting
Wow, I'm getting nervous.
First, let me say to Krista and others I hope you are feeling better. Cancer sucks and it's not fair that even when it's gone it continues to rob us of our quality of life.
I'm about a month away from reversal and reading these post makes me wonder. Not whether I want to do it - I still do - but how bad it will be. Has anyone had a good experience? I had my ileostomy on Dec. 1 , it will be almost exactly 6 months when it comes off. Does that matter? Is it worse when it's been much longer? From the day I came home with it I've been looking forward to getting it off. Like Sundanceh I just got by as far as the margin. It was very close to the anus.
The night I came home from the hospital I searched for "ileostomy reversal" and found this site and thread. I read it and was a bit concerned but it was a while off at that point. I came back to read it occasionally. Now it's getting closer and I am thinking about it more. I hate this thing. I woke up again this morning to find that I had rolled over in my sleep and the seal broke. Nice. That hasn't happened in a while but when it does it sucks.
To be honest, my overall experience has been somewhat puzzling to my doctors. First of all, the discovered the cancer at the same doctor visit when they discovered I had a bad aortic valve and aortic aneurism that needed to be repaired ASAP. Had to have that done before they would do the caner surgery. I also had chemo/radiation and had very little reaction to it. Just a bad rash from the radiation, the chemo didn't bother me. I had a full clinical reaction to the treatments, meaning the cancer was gone, which they said happens but is pretty rare. Through the surgeries, recovery and subsequent treatments, I have really had few complications. Never lost any hair, never got sick or even nauseous from the chemo. My oncologist wondered out loud whether I was taking the pills. I start my last of 15 weeks post-adjuvent chemo this week. But now I'm getting nervous about the reversal.
Can anyone offer any positive experiences about the reversal to those of us looking forward to it?
Thanks and I hope all are well.
As far as I am concerned it was a mistake for me to have had the reversal and I'm now thinking of going back to having a bag.
Maybe it depends on what treatment youve had and how everything is rejoined.
Thinking back I found it much more convenient to have my "temporary rectum" round the front. Easier to clean and easier to unblock if I got constipated. Used to have fun popping them cannon balls out of there! haha! I really only had a reversal coz I found it difficult finding trousers to fit me properly. A lot of womens trousers these days are low slung hipsters or the trouser band would lie right across the stoma sometimes rubbing it and making it come off.
Unfortunately things are not working out for me and I will probably go back to having a bag. But everyone's different and you never know until you try!
X0 -
How long after your chemo
How long after your chemo/radiation did your bag come
off? I have two more weeks of chemo radiation, and I was told I get a two week break then I get a port for the stronger chemo.. but the same doctor that did my bag does the ports and is going to do my reversal and I have to say up until now have been looking forward to having it off.. also please tell me the reversal is easier than the installation because I was in pain, and I gave birth natural to two of my kids, and I have had kidney stones..
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Please post a new thread - Old Thread
This thread is so old. If you want a history of ileostomy reversal, please look at my "About Me" page. It will give you a history of what I've been through. I'm due for an update on my site but it will give you a big story about it. Good Luck
Kim
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Hi Mistycool25Mistycool25 said:How long after your chemo
How long after your chemo/radiation did your bag come
off? I have two more weeks of chemo radiation, and I was told I get a two week break then I get a port for the stronger chemo.. but the same doctor that did my bag does the ports and is going to do my reversal and I have to say up until now have been looking forward to having it off.. also please tell me the reversal is easier than the installation because I was in pain, and I gave birth natural to two of my kids, and I have had kidney stones..
Yes, this is an old thread, but I'm still here and happy to say that after some time, I was able to gain control over my stricture. It never got better per se; I can no longer be scoped it's so narrow, but my body knows how to push through it and the abdominal pain is only occasional now.
I don't for one minute regret getting the reversal. It was worth the torment to not be on a bag, at least for me. Some people do very well on a permanent ostomy, and strictures aren't the norm.
You sound like a very strong woman and will get through it. Just remember that it will take time for you body to readjust, so be patient. Also, marijuana helped in the beginning both with the pain, and with relaxing the stricture; if you live in a state where it's legal.
Much luck and best wishes!
Krista
I forgot to mention I had the bag for fifteen months.
0
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