Share Your Reversal Stories: The Good, the Bad, and the Realistic

I want this to be a topic of the month as everyone seems to think that reversal is the answer..I want people who have great stories to post here as well as any other bad or not so good stories to post here...I want everyone to hear all the good and bad...........Please share,    as I personally believe the medical establishment hangs the proverbial "reversal carrot" out for those of us that are chronically ill and believing that its better than Ostomy( because they dont get it, that it can be great, life altering, life enhancing, life giving and just plain great)...Period...



For those of you without chronic illness and had an emergency surgery for some reason,  Yes I do believe reversal can make you whole again,  However those with chronic illness,  I believe it s like wishing on a star....a false hope and one that hurts us more than helps us in the long run as well as it doesnt help us to accept the current situation and to move on with our journey.........



I look foward to hearing  stories, both the good ones and the not so good ones.........Michael

..

Hi Michael... well, having Crohn's, I have a negative story

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sorry. They tried a reversal on me when I was 13, and it turned out to be a disaster. I was given my ostomy when I was 10, and at that time, they thought I had UC... I wish that would have been the case... but then, unfortunately, by the time I was 13 and nearly losing my life, once again, they realized without a doubt I have Crohn's and that it would be a demon that would rear its nasty head every now and again in life. They did want to give me a chance, however. They did the reversal, but bad things happened. I will spare everyone; I was in the hospital for over 3 months... went home for another 6 months or so before I was strong enough to go back and let them finish what they couldn't in the OR... then ended up having the ostomy again.




I never know when the next bomb will drop. I have already had 5 surgeries due to my Crohn's, and when I fall out of remission, it is a terrible fight. Of course, all of my large intestine is gone; they took that when I was ten... but since, quite a bit of my small intestine is now gone as well, but I'm doing very well.


So... at any rate... a reversal is likely not in my future, as was explained to me in the past, with chronic illness like Crohn's, you don't have the options or realistic hope that those do who have UC.




It took me a long time to ponder if I would post this or not. I would much rather post something encouraging and positive and give more hope to others... but please, those of you with Crohn's, just remember this is my own personal experience and situation... everyone is different... and there ARE others with Crohn's who have had the reversal surgery that I have been told about who are doing very well!!! My case has always been severe... not everyone has it that bad with Crohn's, so please don't base your own outlook or hopes on MY life... I would never forgive myself if posting my own experience here would depress someone or shoot down someone else's hopes for their future.




Well... I have a hole in my tummy, as most of us do... and quite frankly, it sucks LOL BUT!!!! I'M ALIVE!!!!!!!!!!!!..... and I don't know about y'all... but I'm having as much fun in life as I can... ain't nothing gonna break my stride

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AND I DON'T WANT ANYTHING TO BREAK YOUR STRIDE EITHER!!...




I'd still rather have my ostomy than be blind... or stuck in a wheelchair... or a hundred other things... not that any of that would keep me down either... if I was blind, I'd still run with scissors... if I was in a wheelchair, I'd attach a freaking jet pack to the chair and leave my tracks 'n pop wheelies wherever I go... wouldn't matter.




Love Ya-ALL!! MMMmmmmmuah!

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~Your Little DOE!

No sorries DOE,     The truth will set you free...........Still love your words and delivery as well.......Till next post...........MUAHHHHHHHHHHH  back at ya............Michael:)

The link works anyway Doe!

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     Thanks for that, completely forgotten that song (and me an 80's music tragic!).

Sorry to divert the post but its a great thread Michael and interested to hear what peeps have to say.  Can't comment myself being one of the irreversible ones but personally I wouldn't have my colon back if you paid me a s#!*-load!

Cheers all!  

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Living with Your Ostomy | Hollister

well i must say that made me cry a lil cuz i never thoueght of having a colostomy was a blessing but i must admit i am better than b4. i was diagnosed with crohns since i was 2 weeks old. i beleive i still am the only 1 who has had crohns at an early age. i want to have a reversal AND THE DR. SAID I CAN BUT I NEED TO TAKE MY TIME. my surgeon does not have a great bedside manner but hes honest and he gives me no BS. i think my problem is more of a mental thing having this bag than anything. i want to be whole like i was b4. so far i had my bag for a 1 1/2 and i want it off. but its true iam lucky to be ALIVE!!!!!!! i will buy some time and see wat happens. i too want to see if there r people out there in the world who have had reversals. feel free to contact me

Hey
I just read your profile and I was diagnosed with Crohns disease when I was 38. I lost my colon within 18 months of being diagnosed and from what i was told I had a very aggressive disease. Since then I have had 2 ileostomies  and 1 reversal. i know it doesnt add up but when i had my colectomy they joined me up with an ileo-rectal anastomosis. 3 years ago I had my rectum removed and a permanent ileostomy fitted which i have since named squirter.

In all honesty I don't think there's anything you can't do that a person with a normal system can do. Sure there are limits to lifting etc but as for everything else it's up to you what you can and can't do. I was an interstate truck driver here in Australia, saw a lot of this great land and met some nice people. Trucking is no easy life with long hours, poor diet, lack of sleep and some hard work in between.

As for relationships, well I met my wife over the internet. She lived in another state and had never heard of Crohns or ostomies before she met me. She accepted it as being a part of me. Never once made a comment about it and has always been there in my darkest moments. Sure she has worn her fair share of um Squirter juice when I have knelt on the bag or rolled over and popped it off but she never complained and sometimes even cleaned it up. So there is hope for anyone to find love and true hasppiness if you look for it.

It is one of the toughest things for Ostomates to accept they have a bag and what people will think when they see it intimately. Well in my opinion if they accept then they're worht pursuing and if they don't then stuff em they're not worht it.

Be strong girl, get out there and take life by the balls and make it yours.
I wish you all the best in whatever you pursue in life and stand tall and proud,, your are an ostomate and are among the lovely people..

Kind wishest and warm hugs

Steve

To Gus,  I love your honesty and bluntness..........

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                    and to

                                Sicilian chic

                                           I want to say this.   You are not alone in this journey..... I am glad to hear that you are better than before physically, because thats what happens to most of us immediately.  Thats the first part of the healing process.    However the second part of that equation is slower to come around....the mental well being with regard to the change in our appearance and the way we have to deal with our new plumbing......



                   You also say that you want to be normal again............Your normal before was being sick, no pouch and physical appearance same as before............Your current  normal is healthier, pouch and slight change in physical appearance...........This might be your new normal and it could be permanent but maybe not,  but whatever is in store for you keep asking others on this site about their stuff as you will learn much............Much more than any doctor can tell you as to how it feels to be us................I want you to also know that you are one beautiful young lady and just beause their is  a pouch in your front,  doesnt make you any less normal or any less beautiful..........



          

    I am looking at this post each and every day to hear some good reversal stories  and still want to hear from anyone out there to share their story......So Please guys and gals start typing and sharing............Your friend Michael..........

Hi sweetie

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  Wow, Crohn's since you were 2 weeks old, you are the youngest I have heard of.  Don't be afraid to try the reversal in the future... if you want... it might be a wonderful thing for you!

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    Something I was thinking about this morning in my own experience, however, is when I mentioned I would actually try a reversal again, I forgot to take into consideration the fact that, for me, having this ostomy has allowed me to continue with a 'normal' life.  I have worked hard all my life, grew up on a dairy farm and knew full well what tough labor was... then my entire adult life worked a full-time job and a part-time job on the side, plus was quite active in the community and was a Big Sister in Big Brothers/Big Sisters Org for 8 years and have provided Animal Rescue Service for 23 years... so what I'm saying is... despite the surgeries and ups and downs with illness, I still am very active with hiking, kayaking, gardening, among more dangerous, more unconventional fun activities and hobbies, lol... and Crohn's hasn't prevented me from doing anything I've wanted to do in life... and having the ostomy made it possible to do all those things... had that reversal worked out in the past, I would be ostomy-free but would have to stay a bit closer to the bathroom and other inconveniences would have had to be dealt with... whereas the ostomy, I believe, has given me more freedom.  

Flip a coin, I guess, and like I said before, every situation is different.   I don't want you to be afraid of trying a reversal... and I don't want you to be afraid of or disappointed in keeping your ostomy either... I hope you take that plunge into life and continue to do whatever you want to do

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  ... either way!

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There are lots of positive reversal stories to be heard... I certainly hope some are posted in here

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Much love to you!  ~ Doe

When I was first told that I might be eligible for reversal I thought, "Yipppppppppeeeeeeee!!!!!"  But that was then and this is now.  My ugly hernia bothers me more than my bag, frankly, I don't think about my bag that much.  I wonder if being a woman helps.  Ever since puberty we have had to "go down there" and take care of business changing kotex, etc.  That can be a sloppy business but it was part of life.  I look on this in a similar way.

I have been told that with my hernia any surgery would be a "significant surgery,"  and would have to be done at a university hospital or some such place.  I do not like pain, and if I don't have to take a chance I don't think I ever will.  I'm not saying I don't realize I have a bag, but I don't think about it all the time and don't let it define me.  Sometimes I think others feel for my situation more than I do.

So, this is my vote for no reversal.

I feel sort of strange replying to this post as what I went through was strange to say the least. We'll try the short version. I'm at work, take a heart attack, they almost lost me three times. After I was stabilised the doc asked if I ever had an aneurysm which I answered yes, then he wants to know where, that I couldn't tell him so asked him to call my doctor. When he came back he told me I didn't have one. My brother told the doctor I had one and the doctor asked how he knew, simple, my brother said, he says he has one, so he has one. Then the doc said he'd see if he could find someone to take me over to scan, my two brothers said just lead the way and off we went, flying down the corridors to the CAT scan and they grabbed me and put me on the table, scan done, back to emergency to wait out the report, finally the doc came in with the report, my brother asked "how big" the doc says quite large, I could see my brother getting perturbed so he asked the doc is it bigger than a marble, smaller than a watermelon? what? Finally the doc says 6.5 cm. There came a chorus of "HOLY SHIT" we all knew what that meant. We lost a friend a while earlier with a 5.5cm.

So now we are in ICU, saved from a heart attack but in real jeopardy with the aneurysm as I would have to wait a whole year to have the operation because of the heart attack.

Finally the year is up and I have the operation, thought everything was going great for the first month or so, then one night I got sick, I mean really sick. The local doctors tried to get the helicopter to get me to the city, 150 miles away but it was too foggy to take the chance, so off we go by ambulance, I doubt the helicopter could have beat that ambulance.

From here on in I have to rely on others as I was in and out of consciousness, in any event I woke up ten days later and found this damn bag tied to my body, not a happy camper as you might guess. Then I find out the doc who did the aneurysm screwed up and my colon was dead. Moving right along after three months I went back to see the surgeon, of course one of the first things I asked was how much colon was left, of course he told me in metric so I had to figure in inches and he agreed, it was a couple of inches, and could it be done, he said yes and I tried to get some sort of help in making this decision and he says I can't help you, you must make this decision on your own. So I asked him about this constant diarrhea, would that go away and he said NO,

and then said I wish more people would ask these questions. Well now my decision was made by me and I don't regret it for a second. I have thought about if I had it reversed and had to live with that kind of shit, hell, that ain't my idea of living and even though I went through a lot of hell for a while, the people on this site have given me so much help and understanding, I can't help but be GRATEFUL, BLESS ALL OF YOU. Ed

I am replying to this forum simply because I am attempting a reversal in 3 weeks.  I am one of those who fell foul of an incompetent surgeon's knife back in Sept 09.  I was hoping to hear some stories on successful reversals but I figure those who have found success aren't in these forums anymore.



I guess when I woke up with a bag attached to my side, I looked at it as a temporary life saver - and I concentrated on the temporary part.  My (new) surgeon is confident of a successful reversal, but as we all know, anything can happen.  As much as I hate the ileostomy, I know it saved my life - it could have been so much worse.  I am also dealing with a lot of anger toward the original "surgeon" who screwed up.



Having said that, because I always look at my situation as temporary, I haven't spent a lot of time worrying about it being a permanent installation.  I am sure, if it were permanent, I would look at it a lot differently....maybe even become friends with it.  But for now, we are not friends.  It hurts, physically and mentally.  I can't work, can't play tennis ... there's a lot of things I can't do right now.  BUT, I am alive and I have an amazing, supportive spouse and kids.



I have a deep admiration and respect for those with permanent ostomies.  You have all had to deal with various serious medical situations and cope with what happened as a result.  You have all given me great strength and optimism for my future, with or without the bag, and I will always be grateful for that.

Well where to start I rarely post anything on these forums although I do quite often read them. I was scheduled for a reversal in sept of 09. I spent several months thinking about the pros and cons. I guess I should add my colostemy is due to diverticlerlitis( probably spelt wrong but not really the point). Lost a small part of my colon when a infection ruptured it. Have had my bag for almost two years I really never have any problems with it, never comes loose, no oder ever escapes and have never had any skin problems to deal with an bowel movements are pretty much normal daily things.  I guess what I am saying is physically I hardly know its there, but and here comes my big one from a lets get out there and meet some people stand point well lets just say not my strong point. Truthfully it isn't the other people it is me. well enough said back to the reversal. Two days before the surgery I came down with the flu, that time of year I guess, and surgery of course was canceled. which brings us to  temporary or perminent thinking. I guess I live my life thinking this is temporary but here I am 4 months later and I have still not rescheduled my reversal. the big thing for me is My doctor said 1 out of 10 reversal leak and have to be put back to a colostomy. I guess that is pretty good odds when you consider not having the surgery is 100% sure its perminent. but there is the old yay I am gonna be like b4 I am so hiped up I can't wait and then you wake up and the first thing you do is reach down to your belly and what do you find there 1. a scar or 2. another bag and devistation. Now I have to deal with getting use to that damn thing all over again Which I believe would be alot harder the second time around. Anyways the point here, if there is a clear point is this decision has become the focus of my life instead of life itself. Well, wish me well while I travel this road.

Thanks

Rick

This is my first time on the forum, but I wanted to reply to this. I had my reversal back in March of '09. I want to be perfectly honest about this. My situation was much like yours. I too had to have a colostomy because of a mistake during a colonoscopy. I still can't spell that correctly, but I'm sure you understand. I was also very angry about the whole thing, and I still am to this day. I had two bags and hated it, but, as you said, it did save my life, and I am grateful for that. I had lots of pain and discomfort and stoma complications with infections and soreness on the ileostomy side. I couldn't wait to have my reversal. I was in the hospital nine days for my colostomy and was there for twelve days after the reversal. I was happy when I woke up and saw no bags on me. I wasn't ready for the pain thereafter. To be honest, the reversal was harder to take than the colostomy. For me, it was very painful and took a long time to begin to pass gas and eventually have a BM. The surgery itself took over 4 hours, so it took a long time to get over that long anesthesia. I had a catheter the whole time I was there and thought I would have to wear it home. Was finally able to urinate on my own on the last day there. I guess I just want you to know that there may be lots of pain and discomfort for quite a while after your reversal. It's been almost a year for me now, and I still have complications. Actually, that's why I recently found this site because I was wondering if this is just the way it is or is it just me. I have major scarring, and my scars are somewhat painful. One of the reasons my reversal surgery took so long is because of excessive internal scarring. I do wonder if this is one of the reasons I have so many complications now. I think I now have lots of internal scar tissue. My stomach is larger now than it ever was in my life. I used to be slim, but now I have a pot belly. I have several bowel movements every day. Sometimes as many as 8 to 10 a day. Food seems to pass right through me. Many times not fully digested. I do eat whatever I want, so that is not an issue anymore, the way it was when I had my bags. I was unaware of what was to come after the reversal. I still would have done it even if I did know, but I would have liked knowing what was to come. I guess everyone is different, and therefore no one can be sure exactly what will happen. I also got pneumonia when I finally got out of the hospital. All of that coughing did not help at all with the pain in my abdomen. Actually, I'm still coughing quite a bit to this day. I also developed an umbilical hernia just about two weeks ago. My belly button is not where it used to be; it's off to the side because of the main scar down the center of my belly. Well, I now have a hernia right there on my belly button. I can feel the weakness in it when I push on the hernia with my finger. Feels like a hole right in the middle. I hold it in when I cough. I guess I'll have to have that fixed one of these days. Well, these are some of the things that you might encounter, but then again, it may go better for you. I hope it does! Good luck with your reversal! Take care, Mark

I too am looking into a reversal for a ruptured colon from diverticulitis. My GI said since only 10 inches of the L colon was removed, I would be an excellent candidate. When I met with the surgeon, he told me he would not do the surgery. He felt if I didn't know why I had chronic lifelong constipation, I needed to know why or I would have the same problem. I agreed to have several tests and wondered why the GI specialist hadn't taken that precaution. So first, we check for leaks with an enema and X-rays. Then the colonoscopy and biopsy to check for Hirschsprung's and UC, Crohn's. If all goes well, he thought we could try it, but he would prefer to remove the whole colon during the process to cure the constipation.

He then mentioned I may be sorry if I have constant diarrhea and need to wear a diaper with no odor control. Or the other possibility that the constipation would cause another rupture. During the surgery, he would have complete control to decide whether to go ahead and remove the whole colon even if I didn't want him to. He warned me of scarring, hernias, and the event of waking up with a new location for the ostomy.

My first instinct was to head for the internet. I did a search on colostomy reversal. There are many different locations and studies. In general, after age 65, the success rate is low and the death rate is high. Success is higher if you have no preexisting disease, no high blood pressure, are not obese, or have respiratory problems.

It was stated that it is a very difficult procedure and you should be sure your surgeon has a lot of experience. It is a lot more difficult than the initial one, with all the additional scar tissue. Then there are the common risks of nicking a nearby organ, or the high rate of leakage. Small leaks can be absorbed but larger ones can cause peritonitis. It was advised that all patients should have a barium enema X-ray to check for leaks after both the first surgery and the reversal.

As for me, I am going to Loma Linda University Hospital to roll the dice. But I am still doing more research to avoid surprises. I want to go in with my eyes wide open. My body is still mine (even if sometimes it feels like an alien) and the medical decisions are mine too. I have to live with them.

Best of luck and thanks so much for all the info on this post. It's a great topic since most of the good reversals aren't here anymore. Sorry, most of these are downers.

I have posted previously about my upcoming reversal for“anyone interested”. Well, it's all over now, at least the surgical parts of it. I had my colectomy in 2006 after battling UC for 3 ½ yrs. At the time I discussed the possibility of a future reversal w/ my surgeon & he agreed to leave my anus & necessary part of my rectum in tact in case I decided I wanted a reversal at a future date. In 2008 I developed a peristomal hernia& saw my surgeon who told me that unless the bowel became involved I could just get a hernia belt & leave it alone, which I did. Then in 2009 I got careless about wearing the hernia belt & had a very scary & painful incident of twisted bowel in the hernia area. The ER doc was able to mash & manipulate the bowel back into my main body cavity thus avoiding a life flight helicopter ride back to Houston & emergency surgery that would have probably closed me permanently. When I got back home I immediately went in to see my surgeon who told me it was time to repair the hernia. During that exam he said that as long as they were going to have to “open me up” did I want them to try for a reconnection? To be honest, at that moment I really wasn't sure I wanted to be reconnected. Overtime & trial & error I had developed a wafer & bag system that almost never leaked, was very predictable & I was happy & comfortable with. He told me to think it over while waiting for the hernia repair surgery date. After a lot of thought, prayer & consulting w/ an acquaintance who'd had a reversal I made the decision to have it done. So, on 9/30/09 I had the hernia repair/J-Pouch surgery done. The recovery from that was slow & quite painful, especially at first, mostly in my rectal/anal area, but also w/ some deep abdominal pain. I had to wait at least 3 months for everything to heal before scheduling the final ostomy closure surgery. I had the ostomy closure surgery on 1/12/10, just under 3 wks ago. I was quite blessed to have had no complications from either surgery & left the hospital 4 days after the J-Pouch surgery & 3 days after the closure surgery. Since then I have been trying to get used to the re-engineered plumbing while essentially breaking in a new butt hole, as mine hadn't been used in 4 yrs. I must say it's been a real experience & quite painful at times, especially earlier on. I felt I was giving a whole new meaning to the term “diaper rash”. At times I felt like I was passing barbed wire thru my butt. I finally phoned my surgeons office to ask for help & was told to get some Calmoseptine Ointment. That stuff proved to be wonderful & saved me a lot of pain & discomfort. I am also fortunate enough to have a bidet which allows me to clean up with only a gentle stream of warm water. I can't imagine going thru those first few weeks with only toilet paper & wet wash cloths, but I know many people do it. So here I am entering week 4 post op & getting used to lots of BM's each day. First couple of weeks I was having up to 15 per 24 hrs so my surgeon told me to start taking Metamucil or Citrucel powder a couple of times a day. That has helped get the stools from soup to oatmeal consistency, which has helped w/ the frequencies. Biggest problem now is at night when I can't distinguish between stool & gas so I don't gamble & get up with every serious urge. So far each day is a little better as long as I don't act stupid & eat the wrong things, like jalapeno peppers. I've been told & have read that after 6 mo or so most reversal folks can eat pretty much anything they want.



I was blessed, or maybe lucky is a better term, to have“only” had UC w/ no cancer involved, thus allowing me the option of reconnection. Even so, there was a time when I wasn't sure I wanted to go thru the surgeries, pain & discomfort to have it done. Add to that I was quite happy with my system & had pretty much gotten comfortable w/ the prospect of having an ostomy for the rest of my life. But now that I've had the reversal, so far I have no regrets. I have nothing but the fondest of thoughts & feelings for all the fine ostomates I've had the privilege & pleasure of “knowing” during my journey. I wish you all well. Stay positive & have wonderful lives, you deserve it. I can report on my progress again later if anyone's interested.

Of course we are interested! Hope you keep on improving, keep posting, Rachel xx

Bamatex,  

                     Thank you so much for sharing exactly what you are going through..This is the reason I wanted this discussion so us folks can get the "real deal"  info........Like the Red Butt  burn, and the multiple bowel movements and the consistency issues and the anti diarrheal meds to help with it....You wont hear a word of that from the doctors ,  but to hear it from you and that you are positive about it, is a really good thing and you are helping others to make an edcuated and informed decison based on good advice and experience................Please keep posting your journey and success with the reversal and all that you are experiencing...........Thank you again........





            Since my J-pouch was unsuccessful ,  know that I am so jealouos of your Bidet.........I would have given my right arm for that,   as wiping with toilet paper became a bloody nightmare...........I am now permanent and am happy not to ever have to do that again..LOL

Bamatex! How wonderful for you to be going through all this and still take the time to share with us!!  I hope you continue to heal well and each day brings new positive things for your new future without the ostomy!!!   Oooooo I remember the pain too, when I had my reversal when I was 13, and of learning to use my butt again...they actually had me sit in salt water in the hospital to help heal things...I wanted to leap to the ceiling and dig into the ceiling tiles with my claws like a cat 'n hang there!   ... "sits-baths" they called them...yikes!!  If it wasn't for my Crohn's flaring back up like a demon mine would have worked out...but as it is, the ostomy is back to stay.....YOURS is an uplifting story not without the hard experiences along your journey and your great information will be quite helpful to so many who read your post!!  

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  I wish you all the luck in the world and please do keep us posted on how you're doing, we care about you and we want to know!

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  Hugs from your little sister Doe!

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Also, Warbyrd thanks for jumping into the forum! Rolandrjb nice to see you jump in here too!   It's always great to hear more voices on subjects...love to hear what ya'll have to say!!

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Everyone has some interesting input here and I personally think Michael has started a VERY important thread and I'm glad it's topic of the month, in fact, it should remain somewhere special on this site...this is a pretty big issue/topic! Far too important to be lost in the shuffle of topics in the future.



Peace All! Love yas!



~Your Doe

Hi Michael: This is one hell of a thread you started, and I congratulate you for it. However, something comes to mind. Most of the replies (if not all) are current estimates, and I think this is important enough to have relayed to the forum newsletter, as there are a lot of people out there who are past the forum stage and could give some valuable input. Something to think about, don't you think? Ed

I thought the topic that is in discussion at this time was perfect for what I am going through at the moment, or shall I say, the last 3 years.
I had the reversal done in October of 2006, and for two years, I was seriously ill. Every bit of food I ate literally went through me. My life was living in the washroom 80% of my time. The library loved me; I did a lot of reading while spending so much time in there. My weight went down to 88 lbs, and I was so weak and tired all the time. My doctor prescribed Tylenol 3s to constipate me.
I missed a lot of my children's activities at the time. You can only imagine. Well, one evening, I had the most horrible, painful ache in my abdomen that my husband had to call an ambulance for me. They rushed me into X-ray for a CT scan where they noticed a tear. They did emergency surgery to repair this tear in my J-pouch. I was told that feces were going through my body for a very long time, therefore causing an abscess on my ovary, which they removed.

The ileostomy was to be temporary until the tear healed. Before leaving the hospital, I got an infection in my wound area as well as where the drainage tube was removed! I had home care for 3 years, and now I go to a clinic here in Winnipeg called Access Transcona. My infection is still pouring out of me, and they tell me that I need surgery to take down the J-pouch and close up the rectum/anus and will have a permanent ileostomy. There is a lot more to tell, but it's so long that I just won't get into it at this time. From being on Remicade to every antibiotic you can mention, many hospital stays with septic shock, etc., etc. So for me, they are telling me the reversal did not work because now they think I have Crohn's and not colitis, which is what I was diagnosed with in 2002. I am so confused. I read everyone's story and can't believe what this disease does to people. I am a positive person and know that the best will be done for me, and I will accept the challenges. If anyone has been through this, please reply because I can't get answers from anyone.
Sincerely, Dee Waiting for 4th surgery )O:

Hey man I found the post and promise I will tell my story. But it will have to be later. Or if you remember you can post most of it...

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Ok, I have been there & done that... the day after my 50th birthday I had an emergency colostomy, due to a perforated bowel... who knew I had diverticulosis? Guess I was the

last to know, it certainly explained why I felt like crap most of my life... yes, I was traumatized by the bag, especially since that year, I had joined a gym, lost 40 lbs, ate healthy

nuts, grains, lots of fiber, popcorn, tomatoes... all that contributed to my problem...



Anyway, I mourned, I cried, I met wonderful people on this site, I got over it...

After all, it was wear a bag or die... which was worse...



Suddenly I felt better than I ever could remember feeling, people told me I glowed

... I had energy, I wasn't as bloated & miserable as I had been, since I watched everything I ate... every day was a gift, I enjoyed my life as I never had before, I had a second chance... 6 months go by & my surgeon talks about a reversal... did I want one knowing I could perforate again? Part of me didn't, my friends on this site who cannot get a reversal, told me to go for it... they said they would jump at the chance to be normal again, I told them normal is overrated, I love them the way they are, they gave me a reason to go on every day, they were my lifeline... so I went for it...



I could not eat for a week before the reversal, just Gatorade, clear soup... I got an infection while I was still in the hospital, I was there for 1 week... (4 weeks later, I was back walking 3 miles a day)... I was cut further down & higher than the first cut, he did cut me in the same spot... I found out now (3 years later) that I shouldn't have been cut in the first scar... plus where the stoma was, I have a pucker, my left side is still puffed out... as careful as I was, not to lift 50 lbs of sunflower seeds for my bird friends, I still managed to get multiple hernias... I felt them when I had a bad cough about a year after the reversal... my doctor said it was probably scar tissue tearing, and I believed him, I wanted to... even though my gut feeling knew it was something else...

I am still careful of what I eat, my friends tell me what high maintenance I am since I can't eat seeds, beans, nuts, corn, etc... breakfast is my favorite meal to eat out, since all I have to worry about is seeds on the bread...



2 months ago I had a CT & then a colonoscopy to make sure they don't have to repair anything before they repair the hernias... now I am scheduled for hernia surgery

in 3 weeks from today... and will this be the last surgery I have? Will the mesh work or will more hernias appear, will I perforate again? Who knows... I do know one of the hernias is bigger than my boob and it hurts, I have to lay down & put a waist cincher on it so that I can go to work... and I work at a hospital, I am bending & moving patients all day, yes I know, that's aggravating my condition, all I can do is hope that surgery will fix me...

Oh my goodness Sally, you too have been run through the mill as it were... good luck with those repairs, though I would have concerns about your job afterwards - lifting and shifting of patients ain't gonna be a good idea ..............

I kind of fast-forwarded thru a lot of the comments, maybe I should have mentioned that I too have high blood pressure, seems it was a concern brought up..... I too had a catherer in for almost the whole week I was there, which surprised me at the time since with the colostomy they took it out the day after surgery......



also, after the reversal, constipation is a definite no-no....they told me in the hospital that a man came back after his reversal since he ruptured because of it....so yes that too scared me.........I too have a larger than I ever had abdomen, plus aging is drooping my scars, .....to be honest, it looks like I have a butt on my front too, since I was cut from the crotch up over what used to be my belly button............

.if I could stand another surgery, I was thinking about looking into a tummy tuck......not for vanity, just so I can wear jeans or slacks without a very long top......since its not too easy finding long shirts these days, I do sew, but am very short on time.....



   They suggested eating Activia, but I can't stomach it....so I eat Dannon Vanilla Yogurt, every day....that was the first thing I ate after not eating for 9 days after the colostomy & I thought it was the best thing ever.....I can't eat strawberries, raspberries, anything with seeds, so vanilla works for me.......I think it helps to regulate me......I am also lactose intolerant, but can handle a cup of yogurt a day, I can't take Lactaid--since that will constipate me.......

lots of foods give me gas, my gastro doc, tells me that chicken, turkey, lettuce, onions, bread shouldn't bother me like cabbage or broccoli, which I avoid, but they do... I try to avoid gassy foods with the reversal, since it seems like my control & BM are different.....when I have to go, I really have to go at that moment.......

Hi beyondpar... I'm 26 years old and have been diagnosed with 6 diseases: Addison's, paralyzed bowels, pelvic floor dysfunction, and so on, but it could be worse. Don't get me wrong, it still sucks when chronic illness can't be fixed. Most doctors still can't find out why, and most, after a while, are ready to give up. Some doctors are just pulling my chain and ready to do the cutting. I had my first ileostomy done in March 2009, and it went horribly wrong. I lost tons of weight—well, not tons, but I weigh 120 and went down to about 80 lbs. I couldn't eat and still can't to this day; I haven't been able to since March 2009. So the doctors' reply was, "We have to fix it." They took some of my intestine and did a revision in August 2009 at Cleveland Clinic in Ohio because no one in the state of Indiana can seem to help me. I've also been to Mayo twice; they looked at me and said there is nothing they can do. Ultimately, the surgeries didn't help. I can't eat, my bowels are still paralyzed, they still can't figure it out, and now at 26 years, they want to put a feeding tube in... no way! I literally live in the hospital. I spent 8 months out of a year in the hospital, and this has been going on for three years. I have two children, 4 and 8, and a husband that doesn't deserve this lifestyle, just like many of us don't. I spend most of my time praying to the toilet god. My last hospital stay was 2 1/2 weeks, and 2 weeks later, I was back in for 2 more weeks. I spent Thanksgiving, my anniversary, Christmas, New Year's, and I miss my family because, with this H1N1, children aren't allowed in the hospital. So my husband takes care of the kids, which means I can't see my family when I'm in the hospital for weeks or more at a time. It sucks because I miss them so much, and my 8-year-old thinks doctors and nurses are aliens. Trust me, I let him know that they are helping me. I don't try to avoid it or pretend, but I want him to know that someone's trying to help me. But to me, it's very sad that the people I love have to go through the bad too. So I have a PICC (Central) line, and the TPN bag is like an IV but is basically feeding me. Ha, it looks like milk! I feel like I'm tube central, but like I said, it could be worse. There are so many people on here that do, and my heart goes out to them, but I want everyone to know that what a doctor says will work doesn't always, and sometimes you end up worse. I am getting ready to leave for Houston, Texas Medical Center, the biggest medical center in the world. Hope, hope, and more hope! There's my story; wow, I feel like I am complaining, but I'm very thankful to be alive. Hope to meet some friends on here! Would love to share stories and hopefully help people deal with what we're all dealing with—a very hard chronic illness.
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Hi Sweetkat,

I read your story & it was indeed a tough road you've traveled. I see that you are planning to come to Houston, I presume to see some of the doctors here. I am a former ostomate who just recently (1 mo ago) completed the final closure surgery for my ileostomy reversal. I've had a total of 3 surgeries, all done here, on my road to reversal. All the surgeries were done at Methodist Hosp. in the Texas Medical Center & by the same surgeon & his team. All three of my hospital stays were minimal (4 days, 4 days & 3 days) & were without incident or infection. You are correct in that the Texas Medical Center is the largest healthcare complex on the planet, by far. Over 80,000 people work there every day, it is truly massive & is scheduled to double in size in the next 12-15 yrs. It has gotten this big by consistently providing some of the best medical & surgical care that exists. Heads of state & their families from all over the world travel here for care. By being so large it naturally attracts some of the best, brightest & most talented physicians & surgeons in the world. I tell you this to encourage you & give you renewed hope that the doctors here will likely be able to help you find the answers & solutions you are so desperately seeking. I wish you well my friend. If I can be of any further help to you you need only ask. Have faith & stay positive. You're coming to the right place.

Bamatex

Thanks, that's really an encouragement. I was really iffy about sharing my story knowing that many people had it worse, but you've already helped. I hope things are well for you. That's great to hear that you got put back together(as I call it)lol! That would be one of my biggest wishes. I read your profile and that's quite an amazing story. You've been through alot too. I still can't let my wall down all the way and so some of my story hasn't been told yet, but for now i think i'm gonna do okay. It's great to have people other than your family give advise because they don't know what "we're" going through because they haven't experienced it themselves, not in a bad way. That's a blessing. I hope things get better, i have to say the things I truly miss is popcorn, corn and pork, I'm a pork girl! Can't wait for the day I can eat that and not a TPN bag hanging from a port line, hahaha. You kinda gotta laugh because crying doesn't make anything better, I've learned that the hard way. It was nice talking to you and we'll have to keep in touch. Thanks Kat  P.s. I hope they can do for me what they did for you. We were thinking about Cleveland Clinic again, since i've been there twice already but, i've heard from many that Huston is the place to go, and there I shall. Does it take a long time to get an apt. or to get in there?

reversal i totally agree having crohn's disease all my adult life i have had 4 reversals all where mistakes but at least i exhausted all avenues dagling the carrot when i was 28 12mths i had to wait they wanted to give my body a rest so ileostomy reformed and i thought only 12mths and i will be all better my GOD i was foreva sick lost so much weight really no way to spend life my large intestine was really wasted away but i still kept having surgery finally after 4 years of hell a sunny day the weight lifted off my shoulders and i knew i needed to have my pouch back for eva still struggle with knowing i will die with this thing i am so much better health wise but i still say to people i volunteer @ colostomy in australia get a reversal but its really up to the person at least i know i tried but this was meant to be ..ont know how to fully except this but somdays i forget all about it xxxx cheers from mare

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Thanks  Mooza, Sweet kat, bamatex, lottage lady, mustang sally and everyone else for their input.....I hope there are more to add to the list here of stories that will offer hope to those wanting the reversal and to help those having difficulty making an informed and educated decsion.......I will forever offer my advice and try and help those,  not just with a YES or NO  but to help them make an INFORMED and EDUCATED decision after getting everyones input and experiences......That is the gift of this site............Till the next reversal story........STay well and in touch everyone.....Michael:)

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