Reversal Stories... Please Post. Good and Bad

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beyondpar

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 it's better than Ostomy (because they don't 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 doesn't help us to accept the current situation and to move on with our journey...



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

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WOUNDED DOE
Hi Michael....well, having Crohn's I have the negative story 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 it's 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 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.
Soooooo....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.

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 the Crohns 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 elses 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 ya'all....but I'm having as much fun in life as I can ....ain't nuttin' gonna breaka my stride

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 freakin' jet pack to the chair and leave my tracks 'n pop wheelies wherever I go....woudn't matter.

Love Ya-ALL!! MMMmmmmmuah!

~Your Little DOE!
beyondpar

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:)

Past Member
The link works anyway, Doe!        Thanks for that, completely forgotten that song (and me an 80's music tragic!).

Sorry to divert the post but it's 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!    
 
How to Manage Ostomy Leaks with LeeAnne Hayden | Hollister
Sicilianchic02

Well, I must say that made me cry a little because I never thought that having a colostomy was a blessing. But I must admit, I am better than before. I was diagnosed with Crohn's since I was 2 weeks old. I believe I still am the only one who has had Crohn's at an early age. I want to have a reversal and the doctor said I can, but I need to take my time. My surgeon does not have a great bedside manner, but he's 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 before. So far, I have had my bag for 1 1/2 years and I want it off. But it's true, I am lucky to be alive! I will buy some time and see what happens. I too want to see if there are people out there in the world who have had reversals. Feel free to contact me.

Gus

Hey,
I just read your profile and I was diagnosed with Crohn's 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 doesn't 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 Crohn's 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 happiness 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 it, then they're worth pursuing, and if they don't, then stuff 'em, they're not worth 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. You are an ostomate and are among the lovely people.

Kind wishes and warm hugs,

Steve
beyondpar
To Gus, I love your honesty and bluntness..........
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 that's what happens to most of us immediately. That's 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 because there is a pouch in your front, doesn't 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..........
WOUNDED DOE
Hi sweetie   nbsp;wow Crohn's since you were 2 weeks old, you are the youngest I have heard of. nbsp; nbspDon't be afraid to try the reversal in the future ...if you want....it might be a wonderful thing for you!   nbsp; nbsp; nbsp;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. nbsp; nbsp;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'n down 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. nbsp; nbsp;

Flip a coin I guess, and like I said before, every situation is different. nbsp; nbsp; 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   nbsp; ....either way!

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

Much love to yah! nbsp; nbsp;~ Doe
Maryallison

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 at 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.

gutenberg
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
canaussie
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.
rolandrjb
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 colostomy is due to diverticulitis (probably spelled wrong, but not really the point). I lost a small part of my colon when an infection ruptured it. I have had my bag for almost two years. I really never have any problems with it. It never comes loose, no odor ever escapes, and I have never had any skin problems to deal with. Bowel movements are pretty much normal daily things. I guess what I am saying is, physically, I hardly know it's there. But, and here comes my big one, from a "let's get out there and meet some people" standpoint, well, let's just say it's 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 the surgery, of course, was canceled. Which brings us to temporary or permanent thinking. I guess I live my life thinking this is temporary, but here I am, 4 months later, and I still have not rescheduled my reversal. The big thing for me is my doctor said 1 out of 10 reversals 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 it's permanent. But there is the old "yay, I am gonna be like before, I am so hyped 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 devastation. Now I have to deal with getting used to that damn thing all over again, which I believe would be a lot 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
Warbyrd
This is my first time on the forum but 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 illeostomy 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 there after. 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 too over 4 hours so it took a long time to get over that long anestesia. 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 scaring and my scars are somewhat painful. One of the reasons my reversal surgery took so long is because of excessive internal scaring. 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 to 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 any more, 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 I again, it may go better for you. I hope it does!! Good luck with your reversal !! Take care, Mark
Faith4Today
I too am looking into a reversal for a ruptured colon from diverticulitis. My GI said since only 10 inches of 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 xrays. Then the colonoscopy and biopsy to check for Hirsprungs and UC, Chron'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 success rate is low and death rate is high. Success is higher if you have no preexisting disease, no high blood pressure, obese, or 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 alot more difficult than 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 xray to check for leaks after both the 1st surgery and the reversal.

As for me I am going to Loma Linda University Hospital to roll the dice. But 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.
bamatex
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 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.
lottagelady

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

beyondpar
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 won't 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 educated and informed decision 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 jealous 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
WOUNDED DOE
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! ... "sitz-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!! 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! Hugs from your little sister Doe!

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 y'all have to say!!

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 y'all!

~Your Doe
gutenberg
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 ostimates 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
dee05
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 last 3 years....
I had the reversal done in October of 2006 and for two years 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 did alot of reading while spending so much time in there... my weight went down to 88lbs and I was so weak and so tired all the time . My Doctor proscribed tylenol 3s to constipate me.
I missed alot of my childrens activities at the time... You can only imagine. Well one evening I had the most horrible painful ache in my abdomin that my husband had to call an ambulance for me. They rushed me into x-ray for a c.t. scan where they noticed a tear. They did emergency surgery to repair this tear in my j-pouch. I was told that fece's was going through my body for a very long time therefore causing an abcess on my ovary which they removed.

The ilostomy was to be temporary until the tear heeled. 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 iliostomy. There is alot more to tell but its so long that I just won't get into at this time. From being on Remicade, to every anti-biotic you can mention many hospital stays with septis shock etc, etc. So for me they are telling me the reversal did not work because now they think I have crohns 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:
Georga41

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...

Past Member
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 have 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#, 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 can not 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 over-rated, I love them the way they are, they gave me a reason to go on every day, they were my life line......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# 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 my 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 1 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, thats aggravating my condition, all I can do is hope that surgery will fix me......
lottagelady

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 ..............

Past Member

I kind of fast-forwarded through 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 catheter 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 it's 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...

sweetkat
Hi beyondpar... I'm 26 years old and have been diagnosed with 6 diseases,Addison's, paralized bowels, pelvic floor disfunction, bla bla bla but, it could be worse, but don't get me wrong it still sucks when chronic illness can't be fixed. Most Dr.s still can't find out why, and most, after a while are ready to give up and some dr.s are just pulling my chain and ready to do the cutting. I had my first ileostomy done march 09 and it went horibly bad, I lost tons, well not tons of weight but I weigh 120 and went to about 80lbs. I couldn't eat and still can't to this day, haven't been able to since march 09, so the dr.s reply was we have to fix it, they took some of my intestine, did a revision in Aug.09 in 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 they're is nothing they can do, ultimatly the surgery's didn't help, i can't eat, my bowels are still paralized, they still can't figure it out and now at 26 yrs they want to put a feeding tube in... no way!I litteraly live in the hospital. I spent 8months 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 desrve this lifestyle just like many of us don't. I spend most my time praying to the toliet god. My last hospital stay was 2 1/2 weeks and 2 weeks later I was back in the for 2 more weeks, i spent thanksgiving, my anniversary, christmas, new years and i miss my family because with this H1N1 children aren't aloud in the hospital, so My husband takes care of the kids which means i can't see my family when im in the hospital weeks or more at a time. It sucks cause i miss them so much and my 8 year old thinks Dr.s and nurses are aliens, trust me I let him know that they are helping me, i don't try to void it or pretend but i want him to know that someones 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 i.v. but is basicly 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 Dr. says will work doesn't always and sometimes you end up worse. I am getting ready to leave for Huston, 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 alive. Hope to meet some friends on here! Would love to share storys and hopefully help people deal with what we're all dealing with. A very hard chronic illness.
bamatex
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 month 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 and his team. All three of my hospital stays were minimal (4 days, 4 days, 3 days) and 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 and is scheduled to double in size in the next 12-15 years. It has gotten this big by consistently providing some of the best medical and surgical care that exists. Heads of state and their families from all over the world travel here for care. By being so large, it naturally attracts some of the best, brightest, and most talented physicians and surgeons in the world. I tell you this to encourage you and give you renewed hope that the doctors here will likely be able to help you find the answers and 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 and stay positive. You're coming to the right place.
Bamatex
sweetkat

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 a lot 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 advice 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 are 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 Houston is the place to go, and there I shall. Does it take a long time to get an appointment or to get in there?

mooza

Reversal. I totally agree. Having Crohn's disease all my adult life, I have had 4 reversals. All were mistakes, but at least I exhausted all avenues. Dangling the carrot when I was 28, 12 months I had to wait. They wanted to give my body a rest, so ileostomy reformed and I thought only 12 months and I will be all better. My GOD, I was forever 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 it's really up to the person. At least I know I tried, but this was meant to be. Don't know how to fully accept this, but some days I forget all about it. XXX cheers from Mare .... XXXXXXXXXXXXXXXX

beyondpar

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 decision.......I will forever offer my advice and try to help those, not just with a YES or NO but to help them make an INFORMED and EDUCATED decision after getting everyone's 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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