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I hate the bag more than anything :(

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Posted 4/27/2013 5:38 AM (GMT 0)
Hi All
Let me just start off by saying this whole bag deal isnt new to me, I suffered through this for 6 mo about 18 yrs ago. At age 20 I was diagnosed w UC and it was so bad my whole colon was removed,I awaited surgery 4mo later and a j-pouch and loop ileo was constructed. A cpl mo after that i was reconnected,the best feeling ever by the way is to wake up with no bag attached. I wasin the hospital a week after release from that stay for an xtra 5 days due to a blood clot having formed but otherwise for that whole time from 1995 to 2005 or so other than mild pouchitis and taking anti diarreal drugs like immodium or lomotil i was fine,fine being masure din 'no bag'.

In 2002 i was diagnosed after tests with crohns. So my original diagnosis of UC was a misdiagnosis,thank God it wasent crohns at 1st or maybe that surgeon wouldnt have done the j-pouch option had it been so.In 2005 I began to have more and moe flare ups. Sometimes painful blockages and sometimes bleeding. I was hospitalized 1st time since 1996 in 2008 due to a severe blockage resulting in tube up nose down throat to relieve pressure. Me and teh gastrointerologist tried Remicade ( wich lost effectiveness after about 1 yr) then we did Humira wich seemed to work fine but Id still get flare ups and was in and out the hospital about 7 times between 2008-2011 either with blockages or bleeding,mostly blockages though. On top of it all I had a wife who only seemed to blame me for me having crohns saying it was always 'my fault' from what I ate ( bland diet by the way,no drinking hardly,no smoking,very little to no spicy or hot,no nuts,no raw leafy or tuber veggies) and incessantly badgered about that plus every other little thing she could think of causing me ever more stress and anguish. Towards the end of the marriage last time I was in the hospital a cpl of nights I was even told ' If you get sick again I wont visit you!' I knew it was the end at that point.She was planning and plotting to leave anyways and during her remaining time with me she was constantly in a rage. Few mo later she left and I didnt try to get her back. I was fine,had freedom,other than the divorce( wich was pretty clean,no kids) and home sale I didnt suffer near as much stress and could actually eat things without feeling her wrath. My symptoms declined drastically and only felt really sick a few times. Met someone else who was much more caring and compassionate towards me. BUT, in nov 2011 after a trip to visit her I got very sick with the blockages ( actually 2 blockages).Was feeling a little sick even before I went to see her but I wasent gonna xxl my last trip of the yr for a crohns ache. Anyways, I went once to emergency,what a waste,give me some norcos and sent me home w a emergency room bill. I kept calling in sick,even though I was still going to the bathroom ok i had intense pain everyday. Id eat only soup and just drink water or juice. I wasted from 120lbs to 94lbs. By lower GI day a cpl weeks later I was too emaciated to be given that.I was thrown in an ambulance,sent to the hospital. I was put on TPN wich helped me somewhat but I wasent improving. A week in the hospital,2 weeks in a rehab home and then back into the hospital where the colorectal surgeon ( yes he did save my life ok) butchered me. Didnt bother asking me wich side i wanted the possible stoma on ( i thought the pro would have my intrests in mind,wrong) I'm right sided so youd think stoma on right side would be best,woke up with a terrible extremely flush ( I mean ileo hole nearly level w the skin flush!) loop ostomy( at he did loop and didnt remove my j-pouch,sphincter and rectum without my permission !).He didnt even come by to see his patient in the days after. kept me about a week longer and sent me home with 4bags( not convex wich i later through my own investigation was much better). With such a flush terrible awkward shaped stoma he intestine juices constantly leak draining towards skin before the bag and bleeds constantly as well ( a combo of intestinal moisture and ooze,your digestie juices and blood not even eakin seals wich are so far the best and most comfortable,can stop that combo.I wear a convex pouch with tight ostomy belt,use eakin barrier plus ring and reinforce with pink and clear tape around.Still leaks after a cpl of days! So frustrating! I had the bag before ( better less flush stomas back then by the way) so I'm living this nightmare again. Id much rather endure the broken heart I suffered by being abandoned by ex than to go one day with this disgusting filthy ugly horrible uncomfortable bag. I live in constant fear of leaks wich do happen no matter the instructions I follow.Due to the bag I cant wear my pants up higher or tuck in a shirt,I cant wear a seatbelt when I drive since it smashes the bag thereby putting my life at a huge risk everyday. I have to sleep on the uncomfortable right side since my bags on the left side. I dont have my girl here with me( shes in another country and for now pending the outcome of all this i wont travel by plane due to extreme uncomfort,petrified of leaking bag on the plane and passing through airport security with the bag and having ostomy supplies lost,stolen or confiscated) so intimacy isnt an issue right now but if Im forced to remain this way it will be an issue ( shes on top,bag gets squished.Im on top,bag gets squished and who wants to do doggy w a warm bag of juices resting on their ass?? not visually pleasing anyways,my sex drive is 0.She says she loves me and accepts me like this but I dont accept me like this!) One can learn to live this way,but one dont have to like it. The surgeon in my 2nd follow up about 3mo back said ' maybe youll get used to having the bag,like it so much that you wont want to be operated on again' haha doc are u serious? Let me tell you. Im not a ignorant little kid. I could have this bag and live for 1 million yrs and Id hate every day of 1 million yrs with the bag'. He didnt like that. Do I have a life and a job? Yes I do. I work,I go out to eat,but theres so much I loved to do that I cant no longer with this thing. They say I can be hooked up but inflammation needs to be brought under control so I take prednisone and pentasa ( as I always have ) and some enemas ( mesalamine i believe) to control that. This surgeon ( supposedly one of houstons finest ) says I can be hooked up but he dont seem to be in a hurry at all. He did a lower GI on me 6weeks ago then told me I have inflammation still in the j-pouch from crohns and a stricture where the small bowel enters the j-pouch,referred me back to my gastro doc who prescribed the enemas. I followed up with the surgeon 6weeks later and he says ' Ok stoma looks healthy.Well see you for another lower GI in 6mo...' Are you serious? 6mo? Am I in that terrible of shape that I need to wait 6mo before you can see me?' 'Ok then 3 mo?' Doctor! Will it kill me or you to look up inside me again sooner?' " Ok 8 weeks? Its all arbitrary.' Makes me feel hes lazy and severely questions my confidence in his ability or belief or even desire to make me better. Also said ' When I open you up again and I see that I can hook you up Ill emove the j-pouch,sphincter,and rectum and sew your anus up.....' Wait doc.No you wont,I wont sign up for that. If you open me up and see I cant be hooked up,you will close me back up without removing anything! What happens if a cure or medicine that really controls crohns symptoms comes up down the road?Oh too late for you seanray!haha! So the surgeon says ' Ok i can leave your j-pouch inside to wait for 'your cure'. I gues as a surgeon its better for him there isnt a cure or good medicine for crohns or UC so he can just keep operating.

Well sorry for making it so long but so long as theres hope i will never give up on being hooked up normal again. All you out there and be honest, if all of you with the bag could magically or miraculously be given a normal healthy functioning disease free or at least disease neutralized digestive tract would you forgoe the bag? Youd be crazy not to. Im saying this from experience. Im not in any way knocking those with the bag because I have the bag but I dont want the bag for even a sec longer than neccesary:(( Im not blind to teh possibilty of this being permenant but Im not giving up on being hooked up. Id gladly have occasioanal pain,crohns flareups, and be skinny again to nothave my intestine hanging out and being a slave to filthy leaky costly bags and supplies.Sorry all but thats how I feel:((

Post Edited (seanray) : 4/27/2013 4:41:10 PM (GMT-6)

Posted 4/27/2013 11:30 AM (GMT 0)
So sorry for all you have been through. And you don't need to apologize for how you feel about your ileostomy. Those are your feelings. I had a horrible time with my loop ileo while I was waiting for takedown. It's all about how well your stoma is constructed. Mine was flush to my skin too and it was like battery acid being poured on my surrounding skin 24/7. I cried every day until takedown.

If I were you, I would seek out the best colorectal surgeon I could find to access the situation. Cleaveland Clinic is supposed to be the best at troubled j pouches. I hope you can get hooked back up put all of this behind you. If it turns out that you cannot use your j pouch again, having a end ileo constructed would be better than dealing with the loop ileo. They behave much better since its lower down the line. All the best to you.
Posted 4/27/2013 1:06 PM (GMT 0)
Welcome to the forums. I am new to this site too. I am sorry you are having such a hard time with your pouch. How long have you had it? I have had mine since last June. The first 4-5 months were really hard for me. I had constant leaking, problems digesting food and trouble absorbing medications. Everything eventually got better. I accept that I have the bag for life but I still don't like it. People who don't have a pouch just don't understand. They act like it's no big deal but it is. I think you would benefit from seeing a counselor and possibly taking an antidepressant. I have been taking Celexa for almost 3 years now and I think it helps. If you feel your GI and surgeon aren't listening to you I would find a new one. My GI is great and he has referred me to great surgeons and a rheumatologist. Having a GI you trust goes a long way.
Posted 4/27/2013 2:50 PM (GMT 0)
I'd give up the bag in a heartbeat and if I could have a j-pouch, I would have that done ASAP as well. But I have Crohn's and had it at the end of the small bowel as well, so absolutely no hope of a j-pouch. My surgeon is reluctant to even consider an ileorectal anastomosis, saying that it would make my colitis worse. Anyway, I had my colectomy about 9 weeks ago. First operation, so am pretty new to all this. Not thrilled by the stoma, but it's almost certainly for life, so am trying to accept that.

If you have Crohn's of the small bowel, forget about the j-pouch. I am serious. There is no sign of a cure for Crohn's on the horizon at all. More drugs might arrive, so what? We've got 3 biologics already, do we need 3 more? Or a new and even more toxic class of immunesuppressant? No, I'm done with the drugs, personally.

Your current surgeon sounds no good, so seek out a second and even third or fourth opinion, if possible. J-pouch aside, you might be able to reconnect your ileum to your rectum, so ask about that. Also ask about a stoma revision: whether it can be resited to the right hand side and made to stick out an inch from the stomach this time. I have to say, leaks have rarely been a problem for me and that is probably because I do have a stoma which sticks out.
Posted 4/27/2013 3:08 PM (GMT 0)
I think once you have healed a bit more see a really good dr and see about getting the stoma redone. It may be on the left side due to adhesions or something like that. If you can get a longer one, as you know from previous experience, you won't have the leaking problems.
As for your plane concerns, they won't take your things, if they do see your bag they will just have you do a test thing where you touch the bag through your shirt then touch some paper.
For your intimate issues you can get a belly band, holds it right in place. And it won't get squished if she's on top. And it won't move around in other posistions.
Peronally if I had never had UC I wouldn't want a bag, but I would rather have a bag than be in remission.
You are right that you don't have to like it. BUT if you are going to have it for life you are going to be very miserable going through life with this much anger. You have to have the bag, you can control whether you have the anger or not.
I hope you can get some help and feel better
Posted 4/28/2013 3:58 PM (GMT 0)
You have had a tough go of it. There are many who will endure much to not have the "bag". I felt that way before I had an ileostomy which was a loop before J pouch surgery due to UC and subsequent cancer. I was one of the fortunate ones that didnt have a bad experience with the loop ileo, figured I could live with it if the J didnt work out. My J pouch was a disaster I was a poor candidate to begin with and they had big issues with the blood supply during surgery. Incontinence, pouchitis made my life J pouch centered. After about 18 months I had it disconnected and an end ileo put in place. Unfortunately I also had a crappy flush stoma and this was due to leaving the the J pouch in place there wasnt enough slack to get a good stoma. I made it work, but it was a hassle lots of leaks, as yours is and much worse than my first one. On top of that I had huge amounts of secretions from my abandoned J pouch which I could not retain. 6 months later I had they J pouch removed and a stoma revision. I left my anus intact and am not sewn up on the back side. I am now happy with my situation, it aint like having a colon, but I dont spend my life tending the J pouch and dont have the life style restrictions I had, in fact I have none and I take no drugs. I do have a pouch on my side that was the price of health, freedom and mobility.
Posted 5/1/2013 5:24 AM (GMT 0)
Thank you for the positive input,and to those negative,well ur entitled to ur opinions.So long as i have my parts inside me i wont give up on a hook up at some point,thats why im adamant on the doc not taking anything out that ill need. If i still have a j-pouch,scphincter and rectum in me i wont give up.Ill go to the ends of the earth,ill let a 'quack' doc or a vetranarian operate on me,theres no price to high to get 'unattached freedom' back,ill be in debt for the rest of my life if nned be.if this doc wont do it at his convenience then another somewhere will. even the doc said 'some of my patients who just are having too much difficulties w the stoma i end up operating earlier.' ok lets get crackin! seriously though,i want it of course w maximum chances for success. If inflammation in the j-pouch goes away enough then were good to go,if he gets in,looks,sees that he cant reconnect at that time,ok sew me back up and well try again down the line.he said hed like to switch stoma from left to right( shoulda done that to begin w mad  !) but dont want to if the plan is to attempt a reconnect soon since thats a whole another surgery to recuperate from. I wanna be reconnected and well if the crohns messes it up after THEN well look at a permenant bag option,longer stoma on right side,but i think we should try. I went 18yrs between surgeries and im willing to risk another 18 or even a cpl a yrs of freedom,hell im willing to be operated if the chances for survival are only 1%! Cleveland clinic?Ill look into that. Thing is, its out of area and since im pratically alone in the world id be up there alone more so than i would here in tx. my fiancee and her daughter is waiting for me in another country:( i dont want to be reconnected for myself only,but for them,so i can lead a more enjoyable fruitful life. I know crohns wont go away with the rehook up.I know theres still gonna be flareups,restricted diet,i may loose some of the weight ive gained,i lived with all that for the past 18yrs and dealt with it.Most of the time i was fine. The doctors said in my hospital stay it was the blockages that messed me up,no amount of remicade,humira,cimxia,prednisone and pentasa was gonna remove blockages,a mechanical problem,not a medicinal problem,should have been simple.remove blockages and strictures and give a chance to heal and give a chance for medicine to do its thing. Aside from the excruciating discomfort of the bag( near daily leakings from a combo of blood,stoma secretions and poop) and the paranoia w that i feel fine inside.no pain inside. Yes the surgeon did save my life but pain aside i feel i had it better going to the bathroom 6-8 times a day normally than emptying bag 15times a day and changing nearly every other day( yesterday once and today twice now:(( ) so yes i did get my life saved but my quality of life is much les,its like walking around w ur jail cell attached to u.I dont want to and wont give up on being hooked up again and seeing if it works. Im at my wits end w this whole thing. I nearly lose my mind when i have to have emergency bag changes every other day no matter the products and techniques i use and instructions i follow:(( and worse so to have to emergency leave work to do it and while my stoma is churning out its juices and sludge. Sorry folks,its not the life for me.Maybe stoma revision will help that but my goal is being hooked up. I know inside me that once that happens ill be fine i just need a surgeon to cooperate w me.Id do it myself if anesthesia worked like that but it dont so i cant. I guess i need more patience and ostomy products that actually work for me.       
Posted 5/2/2013 4:16 PM (GMT 0)
Welcome!
I wish you could give me just alittle of your feistiness! My ileo is temporary. I've had it for almost 3 years. Some of my doctors tell me to try to get it connected, other's tell me not to rock the boat. If I had a gypsy ball and it told me if I get hooked up and in 10/20 years I have to go back to being an ostomate, I would NOT get hooked up to begin with. You have the determination to try, even if it's a short span. Again, I wish I could. Similar to you, I still have my rectum and I'm waiting for something to come about in my case that would help me make my decision much clearer. It's hard when you have to electively make it. We all want to control our destiny, push medicine and scientists to find cures/answers. I understand your perseverance but you have to sustain our logic. I would NEVER NEVER NEVER want myself or any others in my life or on this forum to "seek a quack or veterinarian" and suffer the consequences. Your emotions are quite fragmented, lets see if we can settle them down for you.

For your daily appliance struggles, I hear you completely. I, was so much like you. I felt imprisoned because I couldn't leave the house. It leaked while sleeping, driving, anything. A week after I got home, I called my cr surgeon at 11pm, crying that I ran out of appliances, it's friday night on a holiday weekend, I hate my life and why did he save it? I was hospitalized for 6 weeks due to complications. This wasn't a life to live. But I finally got my leaks under control. Having intimacy was also despicable thought in the beginning and I remember saying how I'll never date again.

Recovery occurred in waves with me. But first thing is controlling these leaks. Of course you can't see past it. Can you describe what you use and how? Have you seen an ostomy nurse to help? Stoma placement and creation sounds to me like the culprit. We here don't want you to feel this way, that is why this board exists. Thank you for sharing your story. You are not alone.
Posted 5/2/2013 4:54 PM (GMT 0)
I get hooked up and in 10/20 years I have to go back to being an ostomate, I would NOT get hooked up to begin with."

WAT?! 10-20 years would be a good run.
Posted 5/2/2013 5:26 PM (GMT 0)
Well, to me, not after what I went through. Surgery is not my best friend :-)

If things were more definitive, it would be different. It's a risk, even in that scenario of a time frame. But again, that's me.

Post Edited (windy city) : 5/2/2013 11:29:17 AM (GMT-6)

Posted 5/2/2013 11:17 PM (GMT 0)
I'm with Somedude - I'd easily settle for 10-20 bag-free years! Definitely would have another operation for that; I'd just have to be careful not to hit the oxycodone up so much next time.
Posted 12/15/2013 5:37 AM (GMT 0)
Thank you, Seanray! I know this is an old post, but I just signed up today. You have described my feelings exactly! My ordeal started with anal cancer about 4 years ago. The first year I dealt with the pain I kept getting sent home by emergency room doctors saying I had hemorrhoids and put some cream on it! I was bleeding always and could not walk, bend, sit; whatever, life was miserable. I had a reprieve for one year after they did chemo/radiation. No pain and they said it was gone. I was not quite well, but so happy the pain was gone. Last year I started bleeding again. I didn't want to admit I knew what it was. After all the tests, it was confirmed the cancer was back. Within a month after I was told it was back, I was sent to two surgeons, both telling me I HAD to have my anus/rectum removed because of the radiation I had previously. I would have to have a permanent ostomy. If I did not have this done, I would die. I did not have a "decision" to make as far as what I was told and my family all wanted me to "live". Within two weeks I was on the operating table(July 2013). I was told it was "easy recovery", operation on this day and you will be going home two days later. I started throwing up the second day after the operation. Still throwing up 7 days later, and in horrible pain, I was released because I had stayed too long according to their schedule. Three days after being home I called 911 because I still could not stop throwing up. I finally got some relief when the emergency room doctor gave me Reglan. My home health nurse was not much help. All she kept telling me was you will be healed in about 4 months. I poop more than I ever have. I am constantly going to the bathroom to clean this stupid thing out. It leaks, it smells some times, I am scared to death to go anywhere, I can NOT wear the clothes I use to wear. I can not do a lot of things I use to. And as far as I am concerned, there will not ever be a lover in my life again. It all is so ridiculous and somewhat hilarious when I run all the intimate scenarios through my mind. Spontaneity is definitely out the window. You can see it when it puffs up to the size of a melon on my stomach! It is uncomfortable and messy and just disgusting. As an added bonus, my butt was supposedly welded shut, but I can still get hemorrhoids (the doctor told me this news on my last visit) and have this wonderfully disgusting blood and yellow crap leaking out somewhere back there. Also, it is possible the cancer will be back within the next 3 or 4 years and/or my intestines could drop into the cavity they created by taking out the parts they did. I am back to where I was in the beginning, it is hard to sit and walk because of the wound that will not heal from my butt. And since all doctors/nurses told me and everyone else I would be healed in 4 months; my family is wondering why I am not up doing cartwheels every day now. I have said this from the minute I opened my eyes after the surgery to about an hour ago; if I would of known how horrid this was and is, I would of never had it done. I would of rather taken my chances on having a happy life for a short time than a miserable one for a long time. I am not a young woman and I never was a vain woman. But this "alien" growing out of my stomach, and causing all this trouble, was not worth it. I'm trying to deal with this for my family. My sister-in-law said I changed, I am not the same person I use to be. I told them all that would happen. I have read a few other sites and all the people keep saying is they can't wait for their reversal so they can be themselves again, be normal again. I will never be the same again. I don't think I like this person that I have become because of this surgery. I will deal with it as I have dealt with all the other crap life has thrown my way. But I will not like it one bit!

Post Edited (Zywie) : 12/14/2013 11:06:38 PM (GMT-7)

Posted 12/15/2013 8:34 AM (GMT 0)
first off, let me say that i'm so sorry that you are going through this- sucks, and i hope you get what ypu want.
loop ileos do sound hellish. end ileos are totally different story. with mine i am constantly travelling by air- zero problems, no leaks, issues whatsoever. i dont carry a card or anything, and nobody blinks an eye in security. sleep on both sides with no issues at all. zero problems for initimacy with my wife. i play kick-asx tennis with it. i am eligble for jpouch and have zero interest. personally i think 3 step should be the gold standard for those wanting a jpouch so that a) they know what an end ileo is like (2 steppers end up propagating the myth tgat "the bag" is hellish- loop ileos are it seems- and b) the removed colon can be throughly checked for crohns that wasnt diagnosable because it was too deep to be seen in biopsies. My removed colon confirmed UC but i love my end ileo and plan to keep it.

Post Edited (Probiotic) : 12/15/2013 1:41:01 AM (GMT-7)

Posted 12/17/2013 12:14 AM (GMT 0)
Zywie, your situation sounds lousy now, but it really can get better.

I am wondering what kind of medical people you have who make promises on the amount of time healing takes.... and removing the anus/rectum is not an easy healing operation, just isn't. Home health nurses are sometimes good but often notorious for not knowing what they are talking about.

So, you were given wrong information about how long things can take. A lot of us have taken longer than four months to heal, it's not that your case is supremely unusual in terms of healing time.

Do you have a WOCN (wound care and ostomy nurse)? What kind of care are you getting for the butt wound? Mine stopped healing and seven months later I had a second surgery to fix it. Then it got stuck again in a much more minor way, but my nurse has just tried a new product called endoform, and it's amazing how fast it's getting better. There are other things that didn't work for me that work for others (wound vac, silvadene, etc).

Also, are you very gassy, is that why your bag is blowing up a lot? A lot of people find gas x helpful, and there are other drugs. Also sometimes specific foods or drinks make it a lot worse (soda and artificial sweeteners are big culprits). Often some tweaking makes things a lot better for some people.

Is there an in person support group in your area? I go to one, and I have seen that this surgery is especially hard on the people w/cancer. Most of the people with inflammatory bowel disease, like me, were really sick for a long time and then surgery made us better; plus most of us had time to get used to the idea of surgery. The people with cancer had so much all at once, with something life threatening. I've seen a whole lot of people come in depressed and/or angry and just get better being w/people who know exactly how they feel. It takes time, but people really do move on (and some who thought they would never date again change their minds). No matter how supportive your family is (or isn't) they are not going through the same thing as your are and don't know what it's like.

Online is good too, of course, but there's something pretty amazing about seeing regular people in person who all have bags, including people who had surgery recently and a while ago.

Hang in.....
Posted 12/22/2013 1:49 AM (GMT 0)
Hey Bluegrass, Thank you for the advice. I don't know about being gassy...I just know I am pooping practically 24/7. I am considering quitting eating for awhile. I am very tired of going to the bathroom to empty this thing as much as I have too. It's nice to know I was given wrong information. At least I don't feel so worthless; I thought I was doing something wrong or there was something very wrong with me. There is a group I was told about from the Cancer Institute. But it is not close to my home and I have other things I need to spend my money on besides gas to go to this meeting that I am not even sure I would be comfortable in. As it is, I don't go too many places and not for very long periods of time. I can't trust this bag yet. I have to watch my money, I recently was told by the place I get my supplies from that unless I paid all that I owe they weren't sending me anything. I did make a minimum payment that they told me would be enough to keep my supplies coming; two days later I got a phone call saying they weren't sending the order until they got the balance. Needless to say, I am not getting my supplies. But I do have some extra samples and things I got so I am hoping they will last me until next month. This so sucks. It isn't just this darn bag and all it's wonders I have to deal with every day. But now I have doctor bills and supplies and all this money crap to deal with. I am rambling..... but thanks.
Posted 12/22/2013 11:55 PM (GMT 0)
That's a lot of stress on top of the stress of the surgery and getting used to the bag. Definitely you were given wrong information. Perhaps you are doing something wrong too, but that would be a medical thing, w/the goal of helping you feel better, not a commentary on your worth. You have had some pretty serious health issues going on; these are not things that work on a simple time table, whether or not you do "everything right."

Do you have a gi doctor? Pooping all the time like you are is out of the ordinary, especially when you have colon left. If I were you, that and the ostomy nurse would be priorities.

Is there an ostomy association in your area? If you're in the US you could look on the UOAA website... many of the local groups have visitors programs, where someone who has an ostomy could come to you. Perhaps something like that would be helpful.

This group might also be helpful: https://www.ostogroup.org/ They send free ostomy supplies to people who are having trouble paying for them.

Hang in. You're got a lot to deal with..... no way to make it easy, but you can get through.
Posted 12/27/2013 12:09 AM (GMT 0)
At last some posts from some blatantly honest people who really, really hate "the bag"!  Sometimes I feel like DH and I are the only two people on earth who are not "eternally grateful" for "the bag"!  DH has abdominal fistulas, no additional surgeries recommended for him any more.  Too many complications, too many conditions/side effects from drugs/Crohn's! We are left to fight the eternal battle with Medicare to get the bags, ("What?  You have poop coming out of holes in your abdomen?  The holes are not surgically placed stomas? You can't possibly need/want/have/expect us to cover the cost of ostomy supplies! Can't you just stuff toilet tissue in them, or duct tape a zip lock bag over them?  You want/need/must have ostomy supplies?  How crass/rude/ignorant/greedy/ruthless can you be?")  Supplemental insurance carrier..."you really need to change how Medicare handles your claims, (always denied on first submission)!  Buy your supplies somewhere "cheaper", (on-line suppliers will only do business with us if we pay full retail price up front, because Medicare will not cover claims on initial submission).  Your claims are not processed timely/correctly because you are not the norm, you need to work to change Medicare!"  (I can't change how out-of-the-ordinary claims are handled in one little bitty department of Banker's in Carmel, IN, how can I possibly change MEDICARE?) 

Then there is the every day dealing with "the bag".  Poor thing...we are asking it to do what it really was not intended to do, but that doesn't make us hate it any less.  It LEAKS! The skin surrounding the fistulas is raw/weeping/bleeding/growing things which have to be surgically removed and biopsied.  It's a lucky, lucky day if "the bag" last 24 hours! Some days 2, 3 changes are required and it STINKS!  I don't care what deodorant/supplement/mouth wash/Tic Tac, you put in "the bag" or in him, it STINKS!  Night clothes stink, bed linens stink, the bathroom stinks...there...is...no...freaking...escaping...it...it STINKS!

I have read so many, "it changed my life", "it gave me my life back" and I know that is true for so many dear souls and I really am happy for them/him/her.  But for some of us, dear people, "the bag" is not our friend...it runs/interfers/diminishes our lives...and it was just good to hear someone else say so too!

This is definitely not a Public Service Announcement!

Posted 12/27/2013 1:00 PM (GMT 0)
Rose481, I am so sorry to hear of your husbands difficulties and I can feel both of your frustrations. I have no advice or words of wisdom, I just wanted to acknowledge your post and let you know someone is thinking of you both.

Kelly
Posted 12/27/2013 11:22 PM (GMT 0)
What Larasmom said.

I feel an incandescent rage that you have to go through this ridiculous fight for bags. Could you find a sympathetic GI or other doctor to contact Medicare on your husband's behalf, explaining the medical necessity for extra bags?

I am lucky to not have fistulas and to have a reasonable supply of bags, although I do worry that this might change in the future. But if I still feel like the bag interferes with my life more than I'd like, then I can't imagine what it'd be like with fistulas. I hope it's not always this bad and that things change for the better soon.
Posted 12/28/2013 1:08 AM (GMT 0)
My surgeon's office is listed with my supplier. I have a "prescription" for the number of bags I need from the office, but I have been blowing through them as I have very acidic/liquid output with one stoma (very damaging to seals) and a stoma with bleeding skin all around it. I'm lucky to three days on the first and two days on the second.

The surgeon's office confirms my medical necessity with the company and they tell the insurance company. Obviously you have medical complications and should be able to get a medical necessity waiver.
Posted 12/28/2013 11:42 PM (GMT 0)
seanray...certainly didn't mean to hijack your thread...was actually trying to commiserate with you a bit!

In response to those who commented on my response, thank you. I appreciate your thoughtfulness, I truly do. It seems for whatever reason we are destined to struggle with this...we have proven medical necessity, we have submitted letters from doctors describing DH's situation in detail and still we seem to have issues. A few months ago, Medicare started taking back monies they had eventually paid to us upon appeal of denied claims. It was crazy, 2-3 days a week we would get a letter stating how much was going to be deducted from any outstanding/future claims we might have. Those of you familar with Medicare MSN's know that each time an MSN is re-issued due to some change, they last digit in the claim number changes. The number initially ends with a "0"...some of the revised MSNs we received went up to "8"...they would list an item as being covered, then a new MSN would show up indicating the same item was now being denied, then another MSN would come putting that item back on as being covered and a different item would be denied. It took forever to get it straightened out and we never really did receive an explanation as to what they were doing. Initially we were told there was an audit being performed, then we were told that was not the case. Nervewracking! This is our life and I sincerely dread the day we can no longer cope with these issues on our own.
Posted 4/7/2016 8:11 AM (GMT 0)
rose481, I hate this bag more than I have words for.

I'm 42yrs old with colon cancer. My surgeon told me there was a possibility of having a permanent colostomy, but assured me that those odd were slim. We never even discussed the side effects associated with a permanent colostomy. Rectum removal, nerve damage, urinary incontinence, impotence, and having my ass cheeks sewn together.

And making matter worse, these forums are filled with people that a) "This colostomy saved my life. I love it!." b) "I hate my colostomy, and I can't wait to have the reversal. Wish me luck". and c) "My life was horrible before my colostomy, things are better with the bag AND I still have my plumbing, so if I really want to go back to my old life, I could."

Really rose481, I really believe that all these people hate their bags. It's just a matter of how willing they are to lie to themselves, and believe those lies.
Posted 4/11/2016 11:49 AM (GMT 0)
Hi Jpenley, this thread is almost 3 years old. It might be an idea to start your own thread and write your thoughts down there, that way more people will see it and answer to you rather than the previous writers on this old thread.

Take care.
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