Ileostomy and Endometriosis: Coping with Unexpected Surgery Outcomes

Hi, I have had my ileostomy for four weeks now. I didn't know I was having one; I went in for cysts and endometriosis removal for the second time in two years. I ended up in the theater for 9 hours and came out with the bag on. I can have a reversal, they say, but I'm really worried that the endometriosis will spread again and I'll be left with the bag for life. It has been a shock to the system, and I'm up and down, taking it day by day. But it is hard at the moment. Any advice on how to cope with other people around you would be helpful.

Hi Mazz, welcome to the world of Ostomates. Firstly, let me say... it won't always be this hard to cope with. I'm 4 years with mine. And the same as you, they said I could be reversed. After much thought and research and talking to as many people as I could... I made the choice not to be reversed. Not in a million years would I have thought I would make that decision. I didn't want it, but I also didn't want the life I had before it... meaning the pain and embarrassing moments and the sickness itself.
As for other people, well my thoughts there are, tell them if they are your friends and family... most I know hide the fact they have a bag on their belly. Why I can't figure that out yet. Then people wonder why there is such a stigma attached to having one. Explaining your situation to some can give others the clues that there is something wrong with a friend or family member, so in telling your story, you may help someone else NOT get a bag.
  Be careful with what you eat in the beginning as you don't want to get wind. It's painful and drops you on your ass. How have you been with your weight?... I dropped from 63 kgs to 30 kgs. Came out a walking skeleton... You just have to take it easy and try not to stress too much.
  I wish you the best of luck and hope you are able to have your reversal with no more troubles... If you need to ask anything at all, please do... I'm not a shy person and will talk about anything. Especially this subject... Take care Mazz and chin up... it does get better. Cheers, Tara...
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Hi Tara, thanks for getting back to me. I found your words comforting. I just found out there might be a problem from the surgery. I keep passing wind through my vagina and mentioned it to the stoma nurse. She said not to worry, but there could be an abnormality going on, and it will show up on this test I have in three weeks. The doctor said it could be an opening in the bowel or ileum. I've been told just to monitor it, and if I get doubled up in pain and my temperature goes through the roof, just ring an ambulance because it would mean there is some stool going into the body and could cause a real bad infection. Has anyone else had this problem? Could it just be normal or from sex a few days earlier? But it seems to start when the stoma starts working; it's not all the time, but sometimes. It would be good if someone else has any advice or information on the same problem. I'm a bit concerned about where it's coming from.

Hi Tara, even if I have the ileostomy reversed or not, I will still have the disease. It grows anywhere in the body. I'm not worried about the reversal; I can't wait to get it done if I can, depending on whether everything is okay and I haven't got an opening anywhere, which I won't find out until I have the test done in three weeks. My worry in waiting for the reversal is that if I don't get some treatment in the next week or so, the disease will grow again, making it impossible to have the reversal done because it will attack the bowel that is healing first. I'm at the hospital Friday, 15th, hopefully to get something sorted. Put it this way: I'm not leaving the room until I leave with some treatment. I will stand my ground with any doctor or surgeon; I don't trust any of them. I've had too many things go wrong or not done in the past that they should have done. If they had removed the ovary like I asked when I was 16, I would not have all these problems now. But because I was young, they wouldn't, so I said to one doctor, "I'm still young and now having to have life-changing surgery instead." I'm not happy with the NHS at the moment. I've had too many close calls with death with them too, through wrong treatments. So, I'm quite a bad patient to have around. While in the hospital this time, I got a nurse sacked due to her not doing her job right. She didn't give me my meds that I needed, then said sorry the following day. She didn't bring me a commode and left me to wet myself. So, I spoke up and told the surgeon. The next day, she was sacked due to other stuff she had done too.

Hi Mazz, sorry, but I don't know a lot about your disease, but it sounds as bad as Crohn's... From the things I do know... I would say there is definitely a rip or a small hole in there somewhere as what you are experiencing doesn't sound very normal to me... and I would be concerned also. Hope you get the answers you're looking for. Amazing how we have to get tough with the doctors just to get something done. And I like the way you say you're a bad patient, join the club, girl... Have put up with them humming and hawing and not knowing what to look for with me... So now I'm like you... won't take their crap. Good luck with all this as it must be taking its toll on you... Remember, you always can find a shoulder or have a bitch session with me... Hang in there, Mazz, and the best of luck... chat soon. Let us know how you go... Cheers, Tara

How to Stay Hydrated with an Ostomy with Collin | Hollister

I have had my ileostomy since 1996. In 2003, I had surgery to remove an ovarian cyst and repair a peristomal hernia. They discovered my abdomen was chock-full of adhesions and endometriosis! Heck, I didn't even know. I had Crohn's since I was a kid. I was ALWAYS in pain!

They ended up removing everything, so I had a total hysterectomy. 10 days later, I was in for an additional 8 days due to intestinal blockage from the adhesions.

My Crohn's has been in remission since 1996, but my abdominal wall is weak, and I have had several hernia surgeries since. This year, I will probably let the surgeon do a revision and move the stoma to the other side of the abdominal wall that is stronger. Right now, it's affecting my kayaking and things I would like to do that require a strong core (I'm a bit of a jock.)

The reason I didn't go for a reversal is that the years of sulfa, Imuran, Lomotil, Demerol, and more are behind me. I have been free of Crohn's for a long time. Yes, I must still watch what I eat. Give myself B-12 shots. Bruise easier. I even now have allergies because I am no longer on the prednisone that masks that stuff. But my life is good. I am blessed.

My hysterectomy cured my endometriosis. We are sure that I must have developed it AFTER my big surgery. That is not something the surgeons would have missed with 11 resections!

I take great comfort in Matthew 10:27: "Do not fear those who kill the body but cannot kill the soul."

Hang in there!

Hi Tara, I have not been good for the last few days. I keep passing a funny-smelling mucus from my bottom; they keep telling me this is normal. Hopefully, I've got my test next week to see if there is a hole or not and if I can have the reversal done. I went to see the gynecologist and kicked butt. He is personally chasing it up for me now. He rang me personally yesterday and told me he has sorted things for me and I should get a letter by the end of the week for the test. He was fuming when I told him I had these problems and no one had done anything. He said if there is a hole, it needs seeing to before you have the reversal and now is the best time to do it while it's healing and clear. He was disgusted that no one had been in touch with me to sort the test and that I hadn't been seen by anyone. I think he's taken me under his wing and is doing his best for me. He's told me he is very keen to get me sorted and back to normal, whatever that is at the moment; I don't know what normal is. I'm having problems sleeping, can't get comfy, and the bag's really getting in the way. I'm lucky if I get two hours a night and then I'm sat up. Any suggestions? I've even gone and ordered a new bed; it comes Friday. It's a memory mattress; I'm hoping that helps a bit. Has anyone else had these problems? Tara, when can you drink beer and how has it affected you? I'm thinking of going back to work in two weeks. It will be eight weeks since surgery in two weeks. Hoping to be ready by then. How long was it before you went to work? Bearing up at the moment just
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Hi Imperfect, sorry to hear what you have been through; it sounds rough. I can't wait to get the reversal done now. Not sleeping well is really starting to get to me; it's always in the way. Hope you're okay and things are going well for you. Saw the gynecologist on Friday; he told me he had removed the endometriosis and there is only a ten percent chance of it coming back now. He has also put me on the pill now, said I've still got a chance of getting pregnant but can't for the first year after surgery. He said it's not safe to do so at the moment. Plus, the pill will control the periods. Having a run of bad days at the moment.

Hi Mazz, gee girl my heart goes out to you...that mucus you talk about...I get it too...and will till they remove the rest of me.Was weird in the begining but now I'm used to it.It's the other leaking thats a worry.With my Crohns eating me up for 40yrs, it finally exploded into my tummy...blood poisoning on the spot.And the hospital was sending me home for the 3rd time mind you.3 weeks in a coma and 5 weeks in hospital...4 weeks at home before I went back to work.Almost 3 months to the day.AND it was the silliest move I could have ever done.Another 3 months would have been better...as I put myself back in hospital more times than I care to remember.Low or no bloodpressure,dehydrated.etc...and going insane trying to come to terms with the new,ragged,boney me. And hating I couldnt do a lot of the things I used to...silly things like sitting a certain way,wearing certain clothes,carrying a bag of medical supplies around...and last but not least the horrible embarrassments I had.While it was all going on,I just wished if I closed my eyes and then open them,it would be 4ys in the future and it would be gone or I'd be handling it better..And guess what? now its past the 4yr mark...I'm like, that was a hard road- but it also went faster than I thought.Now I kick arse,well as much as I can..you know I still cant over do the work situation,but at least now I have learnt to deal with it and know when to listen when my body is telling me something.

    Mazz as with the beer, well I'd been home about a week from hospital......3 beers and I was ready to party,with all the drugs in me still...easy drunk,all I can say is be careful with anything fizzy...with me anyway, its like turning a fire hose on...lol..And sleeping,I stacked as many pillows behind me at first, then got a spare single bed mattress,got my daughter to do this...roll it or fold it up and put it under the mattress on your side of the bed,ok forgot you have a partner,silly me.That might not work so well.Now I use 2 pillows under my head and one between my knees,which in return gives the bag someting to lay on,then you can lay on your side easier.The reason for the pillow between the knees? at 30kgs,my bones rubbing together were more painful than the stoma...a bright young male nurse came up with that one.

   Mazz I hope this get sorted very soon and this guy(gyno) sounds like a keeper for sure,hang in there girl...chin up...you got support here....Tara

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And may I say a quick hello to imperfect, well you sound like you have been through the wars with Crohns as well.I like you have had it since I can remember,just a shame no doctor found it till i was 40 and almost too late.Now cant wait for the day they say it will not give me anymore trouble..well not like it has anyway.Im so glad I found this site,as now I see more and more of what Crohns and all the other can do to a person, destroys the body,but as you say, the soul is there to stay...Take care ladies ...Tara    One last thing to remember, the disease had made me a very sick person, so when this did happen...I wasnt able to fight back as well as if I was healthy, like now.See my specialist next week,let you know what he thinks after I'm done with him...lol

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Good luck, Tara, with your appointment. I hope it goes well. Let me know what happens. I'm having a few problems with my partner at the moment. He was great at first, but as the weeks go by that I'm sick, I can see he's getting fed up with me. I've tried talking to him; it's a waste of time. He just starts shouting at me, saying he's got a life too. I don't know what's going to happen in the future, but I think if things don't change, we won't be together in a couple of years. The gynecologist said I don't need a hysterectomy; instead, he's put me on the pill for the next year because he did say I could get pregnant, and it's not advisable until a year after the surgery. I just wish he could understand how I'm feeling. I've tried telling him, but it's hard work; he just gets defensive and thinks I'm nagging. What would you do?

Gee Mazz, all you need right now is a selfish partner.And here I was thinking I was hard-done-by because I didnt have a partner to help me through all this,but since I have met,chatted to other ostomates...I am finding I may be the lucky one.Only one man has ever treated me the way your being treated,(along with a good flogging every day,or when he felt like it) and that man,(not man,but wanna-be-man)..was my first and only husband....and it only happened because I was so young.That lasted 3 weeks.Never seen him again and swore no man would ever treat me like that again....and I have stuck to it.These days I have seen too much of ostomates seperating or like yourself,having major dramas.If you keep having trouble with your illness,you can blame him,as the mental stress and all of what comes with it isnt helping you heal.Stress is one of the biggest killers.

He sounds like a man who has always got his way,and his good health.(Always good to get along with your future husbands ex-wife and family,that way you get in-depth stuff) might get you seeing he's not all he's cracked up to be.But anyway, wow!And the kids as well,you poor bugger.Now I do feel for you.If you cant get a connection with the kids,well, you can kiss that one goodbye.Sorry Mazz,just saying it as I see it.Do you have family or good friends close by?Someone you could turn to if needed?You asked what would I do?........If its his place,Id be getting a friend to help me move,if you wanna get tough and play with him....your married,you dont have to move anywhere...Telling him that so my health could improve faster(even throw in that you could get back to work faster)you need time out from him and his brats.Ok maybe you better use your own words there...lmao...But you get the idea.Being ill isnt helping,plus it would be freaking him out a lot as well.....and being a male(no ur not all the same),they seem to find it hard to be soft and caring at the times its needed most.Actually Mazz he sounds like a right a**hole and I'd have kicked his butt out ages ago.There, I said it...Please dont think I'm being rude,but it sounds like this man is making your life hell.....and NO MAN is worth that....If he cant be supportive? well then whats the point of being married?Sounds like your Gyno is a really smart man and has seen the fine print of your husband.I do like the way it seems to be a 12mth wait for your health to be good enough to try for a baby...I think your Gyno is hoping you make the right choice.

   Having a brother just seperated isnt good Mazz,keep an eye on all that girl...He goes pointing his willy in the wrong direction then comes home to you......Mmmm!!!! getting my drift?Ok another subject.

   My love life is almost non-existant.....you see I have become one of those internet loves....

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Someone I met 14mths ago now....we chat a lot  via net and phone and the feeling is mutual but there is so much that seems to be stopping us finally meeting...So its anyones guess...Took myself off the dating scene , about 9 ths after we first started chatting,it didnt feel right .I find out so did he about 3 weeks before me.We have even had our tiffs, where I thought we were done,but no ... we bounced right back.The language barrier is a bit hard..Lots of people dont get the aussie lingo(slang) or take what we say the wrong way...lol..I just love the yankee accent...lol..and love talking to him.He then says I have an accent...I have been single already for 13yrs....so waiting a little longer for this one wont hurt-I'm hoping.We will have the rest of our lives then.

   Okey dokey ,well I have chatted your eyes out(really hope you got that one) and I hope things work out real fast for you Mazz.....Cant believe you have put up with it for 4 yrs..(sorry...cant help myself) later girl,take great care ok....chat soon...Tara

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Hi Tara, it sounds like you've got it made with this guy. I hope things work out for you. I know I've got a lot of decisions to make in the future, but my main one at the moment is to get the next operation out of the way and get well again. Hope you have a good couple of weeks. Will let you know how the test goes on the bowel. xx
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Keep smiling.

Dear Mazz,
You sound like a great lady yourself and a strong one at that, who knows what she wants, very nice to see. And I understand completely about being in this chat, I know what talking about things did for me, so I hope it all helps. Take care and chat soon, good luck with the test... go kick some doctor butt!
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...Tara

Mazz, our mates are supposed to stick by us through sickness and in health. Now is the time for you to be a bit selfish. If he's a keeper, you'll find out. I know it's easier said than done, but try not to add any more stress to your life right now—stress is what got a lot of us here in the first place! Your health is your priority; relationships come and go, the ones we are meant to be with will be there in the end.
         Meg

Hi Tara, love, I had my test done yesterday. Turns out I haven't got a hole anywhere, but the X-ray did show two problems. One was my bladder looked full, but I didn't feel full, and two, the X-ray nurse said they weren't sure about part of the bowel. They said they needed to see what the surgeon says about it. So, just waiting to see what he has to say now. Ringing them later to see if he has looked at it yet. Gonna keep at them till I get some answers. Got my aunt's wedding to go to next Friday, and I'm back at work this Friday. Really nervous, had to go back to work or would lose my job. Have told them I will come back, but I'm gonna see how I go. Will let you know how it goes. Only thing is I'm still not sleeping great at night. I've started laying flat now in bed. Got a new bed, it's right comfy. Anyway, feeling positive and will keep my chin up. Hope you're doing the same. How did it go for you at the docs and how are things
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Hi there Mazz, well that's a bonus there is no hole anywhere... And nice to see they aren't keeping you in the dark... I'm kidding!! As usual, no straight answers for you. You have the right idea girl, get into them, don't give up, does seem to be the way it works. Got my fingers crossed for you.
  Hope you have a great time at your aunt's wedding, and well, take it easy going back to work hey. Don't push yourself too hard or it will take longer to get better. Your health is more important than work at the moment. But I do understand that it's a necessity of life.
   The bad sleeping I think is all a part of learning the new way of life. Bit of a catch-22 with us Ostomates hey... If we can't sleep, we get miserable... and if we get the sleep we need or want... it could (for me it definitely would) be one hell of a mess... lol. Somehow it all works itself out in the long run. I found as time went on... my sleep pattern got better. Oh... and a word of advice to new Ostomates... DON'T TAKE A SLEEPING PILL TO GET SOME EXTRA SLEEP!!!.. Yep, I did... wasn't funny at the time, but the sleep was great... till I woke up..
  Anyway, as far as I'm going... well can't complain, not since I heard that line. "The more you bitch and moan, the longer God makes you stay." Amazing what stays in your head hey? I seem to be catching the flu every 4 to 6 weeks now. A few more symptoms are returning as well. And as far as the specialist is concerned, well he isn't concerned. It's not happening to him. But all he wants to do is keep trying to treat it with more damn pills. When all I wanted was to go back in and have it all removed... And YES, I know it won't get rid of my disease, but it might give me a few more years of not worrying about getting sick again. MY GP said it was a brave and a very smart decision, to go in while I'm fit and healthy. BUT NOOOO!!! Mr. Specialist even got mad at me when I mentioned another Ostomate who gave me the same advice, to get it all out. "And who are you going to listen to? A guy who has trained for it for 30 years? Or a bloke off the street?" MMMM!!! Well, I knew my answer before he even finished... The bloke off the street... who has lived with it, like me all his life, and had a bag for 15 years. Felt like telling him to go get a stoma and then come back and talk to me, but I didn't. I know there are decent doctors out there, just not here... lmao.
   Anyway Mazz, keep on smiling girl, you will get there... And good luck with work... take care, Tara
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Hi Tara, sorry to hear how bad it went with the surgeon. If I were you, I would get a second opinion; everyone's entitled to one, and it can't hurt to try. I hope they get things moving for you and see how unhappy you are about it. You have to fight for what you want in this life, so keep fighting, go back, and ask again from someone else, even if you have to travel to another doctor. Well, I told you I was going back to work, well change of plan. The surgeon rang me Friday, told me the bowel looks great, so I'm back in on Thursday for the reversal. I'm so scared though, I just hope it all goes okay. This time next week, hopefully, it'll all be done and then just a case of getting better. I hope and pray it all goes well. Thought I was getting a cold today, but hopefully, it's just a mild bug that will go before the op. I don't want to catch anything and it put me back another six months. I'm nervous, but I've kept on at the docs and pushed to be sorted out, and that's what you need to do. You should have said that to the doc, how you felt at the end of the day. He would have known how angry you were with him, and it might have made him listen more. Half the time, they don't listen until you make them hear you. I've learned over the years how to deal with docs and surgeons. You have to play hardball with them to get anywhere and know what you're talking about before you see them. My advice to you, Tara, is to look up all info and print it off, and all possibilities for the outcomes, then request seeing another surgeon and take it all with you, and be armed with anything they throw at you and know the answer. They hate it, but it works because they know you know just as much as them about the condition. But then they know they can't fool you and send you away without doing something positive to keep you happy. Remember, if it wasn't for us being the patient, they wouldn't have a job. Keep strong and fight for what you want, girl. Will let you know how the reversal goes, fingers crossed
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Hi Mazz, well aren't you a sweetie to be worried about me when you have your own situation coming up. And I send my best wishes and hope it all goes well for you and your recovery is quick. Will you still come on here and have a chat with us and let us know how you're going? It would be nice if you did. I have known a few ostomates who get their reversal and never speak to another ostomate again. They just seem to wipe the slate clean.
  And yeah, I will be pre-armed when I go back to the specialist. He said he would get me a second opinion, so I will be taking it. Anyway, Mazz, take good care of yourself, okay? I will be thinking of you. Try not to give the nurses a hard time. And if you get a hard time, send them in here and we'll sort them out for you. Talk soon, Tara
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Tara, if you're here, I'm in the chat room. Will keep in touch even after the surgery. I promise.
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Hi Mazz, sorry, but by the time I got there, yep, you were gone. That's a good way to let someone know you're waiting in the chat room, huh? Maybe there should be a post for it. LOL. That way, you come on, let that person know, and then sit and wait and read. Just don't do what I did and go and answer a few posts... oops, totally forgot I was in chat. Later, sweety!
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Hi Tara, guess what? My op has been cancelled. Now having it done on the 25th of September because the surgeon is not working that week; he's away. A bit fed up, but hey, keep going. At least I've got a date for it to be done again. Hope you're okay. How are things going with your man? Mine's okay here, just getting all new windows and doors fitted in the house. Then having a new heating system fitted and a fire in the main room. Then just got to decorate and get new carpets throughout the house. Will let you know how it all goes as we are getting it done. Off to my aunt's wedding now, seeing as I'm not having the op done. Gonna hopefully have a good time. We have booked a hotel for the night too. Chat to you next week. Take care, love xxxx

Hi Mazz, bugger, don't you hate it when they do that to you... and always at the last minute. Sounds like you guys have the same problems as we have... bloody doctors always off on a holiday. As I said to my boss, they should be going out of their way to keep us happy, it's because of people like us who are sick that they can have their 6 weekly holidays. Makes me so angry. We have 3 surgeons here at one hospital (main one) and it hit the news that two of them walked off the job, leaving a long line of patients waiting. What happened to doctors who did their job because they loved helping people and getting them better?! Payment was a few veggies from the garden, (ok now I'm showing my age) but you know what I mean, hey?
As with my guy, we are still in touch and well it's not going too well for him, but he is a tough one, so all we can do is give each other that bit of comfort and companionship that we both need so much, when we get the chance. I need to be strong for both of us I feel at the moment, trying to anyway. And I do keep hanging onto the dream that we WILL meet one day soon.
Hey girl, sounds like you're redoing the inside of your home, nice one... always good to have a change, hey... they say it's as good as a holiday and well, seems you're off on one of them as well... well done. Hope you have a "SUPER GREAT TIME" at your Aunt's wedding. And dare I mention the motel room... Oh, what fun can be had there?!! Make the most of it girl, leave him done for a month
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remember you still have that op coming... and don't let them treat you like a child who waits to be told what to do... go "OI!! NOW PLEASE!!". LMAO... anyway Mazz, take care and have fun... chat when you get back... love Tara
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Hi Mazz---surgery postponed! Been there, done that! Unless they have had surgery themselves, physicians don't know how stressful waiting is! Sounds like you're doing better at home, I'm happy for you. Take advantage of a night away! ---meg