Stoma Relocation? Scar Tissue Problems? Need Suggestions!

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CAW
Feb 19, 2012 7:17 am
Have any of you had to have your stoma relocated? Problems with scar tissue or adhesions? Do you have an innie stoma which makes fitting appliances impossible? Just looking for suggestions.



I originally had surgery and got my colostomy in April 2008 after anal cancer returned after very aggressive rounds of chemo and radiation. I spent the next year thinking that I was cancer-free and by then I started having numerous issues from the aggressive treatment. Just to find out the cancer was back and I was going to have to have a colostomy.



I got a thickening in the lining right at my tailbone. It is so painful that I felt like I had been kicked or had fallen right on my tailbone on concrete. They sent me to a pain clinic where they tried a series of shots to block the pain. These shots didn't do anything to relieve the pain. Then they tried an alcohol block which was supposed to kill the nerve with the drawback that the nerve could eventually regenerate itself and it would come back with a vengeance. That didn't work either. So they sent me to a shrink to see if I was a candidate for a morphine pump. I passed the mental tests and was admitted to the hospital for a trial pump. I awoke from the surgery feeling like a new person. They adjusted the levels and I thought I was in heaven. I could sit without the constant pain but on day 3 they removed the pump and sent me home to let the incision totally heal because they would have to insert the pain pump in through the spinal cord at the same location. So I went through hell for the next 6 weeks again as I awaited the permanent pump to be implanted.



Then I had problems urinating and it was determined that I had a restricted ureter causing the problem. I underwent 6 surgeries in 6 months trying to find something to ease the pain. They tried an NG tube, pediatric stents, adult stents, etc. Nothing worked. The next step was to either reroute my right kidney to the left one or to remove my right kidney and donate it to someone on the transplant list. My kidney is good but the ureter is the issue and there is no way to replace the ureter. Prior to that, they sent me to one final specialist to confirm these were the only options left. He would not recommend either of the surgeries. He said if they reroute my kidney it will probably die from lack of use and would be useless to anyone at that point in time. He said he would not recommend removing my kidney because my left kidney has had as much radiation as the right one and if it is doing double duty the odds are it will die and I will end up on dialysis and on the transplant list. He said as long as I can tolerate the pain he would not recommend anything being done. So I have sucked it up and am trying to learn to live with the pain.



Then 1 year and 1 week to the date of the original diagnosis, I found out the cancer had returned and spread to my lymph nodes. So I underwent colostomy surgery and they removed my anus and rectum because the tumor was so close to the end of my plumbing that there was no salvaging any of it for possible reconnection later down the line.



I used to have a picture-perfect stoma that stuck out between 1/2 - 3/4 inch. Everything was working as we learned the appliances and adjusted to the new way of doing my business. All was well and I had very few problems until I developed a peristomal hernia and was unable to go to the bathroom. I could feel the poo build up and engorge the hernia. My original surgeon did the hernia surgery and everything seemed to be working fine. The stoma remained intact and was still perfect. About a year later I again started having problems and couldn't go again. This time the original surgeon had left the country so I transferred to another doctor in the same office. This time I was diagnosed with scar tissue growing around my stoma. We tried stretching it digitally but it didn't help. So I went back under the knife. This time he unstitched my stoma and performed the surgery through the stoma opening. He found more scar tissue and removed it and closed me up. After the incision healed, I no longer had a perfect stoma. It now is only partially out and is no longer nice and round. So I have had leakage around the stoma where it doesn't sit level and is odd-shaped and the appliances no longer fit like they did. After everything healed up I still couldn't go potty like I should. At the 6-week check-up, I told him that I think there is another hernia and I can feel the colon push in and out of it. When it is stuck nothing will move through it and if I can get it to shift out of there things may work temporarily. But it was very painful and felt like everything gets blocked up. So off to surgery we went again. This time he found the hernia that he missed the first time because it was only visible when the colon was pushed through it. This surgery was again done through the stoma opening. The healing after three different sets of stitches had been placed through the same spots it was not a very secure incision and several stitches ripped through and left two big openings around the stoma that the doctor assured me would fill in with healthy skin and everything would get back to normal. The healing was very slow and the more frustrated I got. I kept telling my husband I smelled bad. It was like rotting skin but he didn't see anything and kept trying to reassure me things were fine. The gaps between the skin and the stoma had started filling in but I still wasn't sure it was okay. Then one day I went in to change my appliance and I had the nastiest green goo oozing out of my stomach around my stoma. There was so much that it ran into the floor before I could reach for anything to try to catch it. The ooze smelled just like what I had been smelling for the last week or two. We cleaned it all up and figured we were due to go to the doctor the following week so we didn't do anything else except watch it and wait for the appointment. At the doctor's, he looked and listened and assured me that it had been a small infection and that he would not have done anything else differently. It appeared that it was all drained out and healing was well underway.



As it healed my stoma continued to disappear into my stomach and is odd-shaped and there is nothing to work with to keep my appliances in place. We have tried the Adapt rings, convex rings, one-piece systems, two-piece systems, etc. Nothing will stay in place and I continue to fight not being able to go potty regardless of what I eat or drink. I take MiraLAX (13 grams) each day and that is hit or miss on working. Even taking Milk of Magnesia isn't a sure bet. Then after several days of not being able to go at all, we even tried to irrigate but nothing came out except for the water we had put in. I knew we had to do something to get me cleaned out because I felt like it was backing up and I was going to pop. By then I was miserable and we had exhausted everything that we know to try. I had been having terrible stomach cramps and figured something had to give. I had to have a bowel movement one way or another. I told my husband that if I didn't go by tomorrow that I was going to have to call the doctor. I hadn't eaten in a couple of days and figured I would just eat a cookie to ease my grumbling tummy. I ate an Oreo cookie before I went to bed. The next morning when I got up, I vomited up what looked and smelled like a cookie I had chewed up and spit out. I knew something was wrong but didn't know what. We called the doctor and he said to go buy some MagCitrate and drink it. We did and still nothing came out. So we called them back and he sent us to the ER because it sounded like a blockage.

At the ER they sent me to x-ray and then inserted an NG tube (what a pleasant experience NOT!). After that, they sent me to a room in hopes that everything would clear soon. That was on Tuesday morning and nothing happened until Saturday after they gave me some kind of infusion along with more x-rays. After I returned to the room, I started going and for the next two hours I expelled everything from my toenails to the tip of my head. It was running out so hard and fast that I filled my pouch and before we could get it changed, I was a constant spray of poo. I tried to stand over the toilet but it was too hard to try and aim my innie stoma. I tried moving to the sink but it was too high. So I scooted over and sat on the edge of the toilet and just let it run. It was literally 2 hours before it stopped enough to get a new flange and pouch in place. The doctor was thrilled and put me on clear liquids starting with lunch. By the evening liquids, I felt like nothing was passing through and was just backing up clear to my throat. My stoma stopped working but after a constant stream for 2 hours I figured it would take a while to rebuild up a supply and liquids wouldn't count. When the doctor came in the next day I told him that I still didn't feel good even after losing everything that I did and it was like everything backs up rather than going through. After 2 days of clear liquids, he put me on liquids and the backup got worse. By Tuesday I was so miserable that I could only take a bite or two of anything before I felt like it was going to come up and out. Then he decided to take me to surgery and see what he could find.



First off the mesh they used on both of the previous hernia surgeries had intertwined around my colon and had to be cleaned up and removed. Then he found tons of scar tissue and adhesions all along my colon. Next, he found a small blockage. And lastly, he found that I had a kink in my colon near my appendix. He tried to unkink it and it burst. He had to remove a portion of my colon to fix that. But all in all, he thought that I would be okay. I stayed in the hospital for another week and was still unable to go potty regardless of what I ate. So he ordered up a shot of something that is supposed to make you clean out. Within a few minutes of getting the shot, my stoma started working just like before following the stuff they injected for the x-ray. I felt much better than I had in the entire two weeks I had been in the hospital. He kept me overnight and let me go home the next day.



After we got home from the hospital I returned to the previous status of not being able to go at all. The doctor gave me a sample of some pills that he thought would make me get regular again. I took them but never really saw that they were doing anything. So rather than letting everything get blocked up again, I would revert to taking Milk of Magnesia to clear myself out. But my stoma continues to disappear farther and farther into my tummy and each time I have a BM, I have to change my flange because nothing keeps the poo from seeping under it and I cannot allow my skin to break down from being exposed to fecal matter. I returned to the doctor's office and he said that he thinks with all of the scar tissue and adhesions he removed he thinks the only option is to relocate my stoma.



Big problem is my stoma is currently on my left side just left of my belly button and slightly lower. I have a morphine pain pump the size of a CD only 1/2-3/4" thick on my right side. It literally takes up my whole right side and there is no room to relocate my stoma without relocating my pain pump. I am only 5'1" tall and have very little room between my rib cage and my hip bone so there is not enough room to relocate it anywhere on the left side either. We talked to the pain pump doctor and he said that he will NOT relocate the pain pump to the left side because if the scar tissue and adhesions are creating problems with the stoma he will not allow the pain pump to go there and have the same issues. He said the only two locations he will even consider moving the pain pump is into my buttocks or in my back. Neither of these locations are ideal. Since I had such aggressive radiation treatments, I have had my butt literally disappear. I had to go to a plastic surgeon after they removed my anus and rectum because the incision wouldn't heal. We spent months packing it with various things trying to expedite the healing. Eventually, they reverted to a vac-u-pump and as long as there was room to insert the sponge the healing continued. Once the hole was too small to insert the sponge and apply the machine the healing stopped. That was back in March of 2008 and I still have a hole that never healed. At that time the plastic surgeon told us that I would be back to see him somewhere between the next 5-10 years because of the radiation damage to the buttocks area that he foresees me having to have my butt rebuilt with a spare muscle out of my leg and excess fat tissue from around my body. It has only been about 4 years but I no longer have any muscle tone in my butt. It is merely skin over bone that just hangs. So I can't imagine implanting a hard metal pump and expect me to be able to sit on it. And if I do have to have my butt rebuilt it would probably be in the way for that surgery too. So the last area he is considering is in my back right at my right kidney. That is the one that I have issues due to the ureter that may end up being removed. If that is the case, the pain pump could be in the wrong space again. I don't want to continue to have surgeries to hopscotch the pain pump out of the way for more surgeries. I am going to have to do something to get my stoma relocated so I can get it to work properly like it did before I ever had the hernia surgeries or the stoma revisions.



Does anyone else out there have issues with scar tissue and adhesions? Or their skin breaking down? Have you had to have your stoma relocated? Did your doctor have this many issues finding a suitable location to do the relocation? Has anyone had to have their butts rebuilt because of the radiation damage? Does anyone have an innie stoma that makes it difficult to find appliances to fit and keep your skin dry and healthy? Or am I the freak that is blessed with every problem anyone could possibly have?



I would love to hear from anyone that has had problems and how they have overcome them.



Thanks so much.



CAW (CarolAnn Weekley)
Pinklady31
Feb 19, 2012 5:12 pm
I have had my stoma relocated after finding out I had a blockage. The surgeon who performed my surgery had to move my stoma over closer to my incision where I had a hernia. My stoma stopped working for about 4 days. They found a blockage. This new stoma is horrible because it leans towards the left of my stomach where my incision is. I had this done in 2009. It is not an innie at all but does not stand up straight, plus it is much bigger than my last stoma. I really hate it. So I wear Coloplast tapeless see-through stick and peel convex pouch. When my hernia infection did not heal up properly, I ended up going to another hospital in their wound infection unit. The incision would not heal, so they took pictures of the wound and started to use a dressing called Aqua Cel made by Convatec. It really did the trick, and my wound finally healed after 6 months of hell. I had a wound vac on me for 3 straight months. What was so bad was the wound was right next to the stoma. When applying Hollister pouches at that time, the wound vac was pulling stool out from under the plastic sheets, and the pouch was lifting off. I was changing the bag 4 times a day and ready to blow my head off. I was so stressed, plus my husband felt the same way. I now have skin adhesions and scar tissue in my stomach. The doctors said there is nothing they can do for me. The pain comes and goes. It is the way I move. If I bend over, go to sit a certain way, I immediately get this sharp pain that can last 3 minutes or 30 minutes. It is like someone kicked me in my stomach. I cannot have any more surgeries because the chemo damaged my two kidneys where I have tiny blood clots in both kidneys from taking chemo and Prograf medicine. Having another operation would compromise my kidneys, and I could risk going into kidney failure. I have only 30 to 40% kidney function left now. With this new stoma, this is the way I will have to live the rest of my life. It is not great, but at least I am alive. I couldn't even have the reversal surgery because of my kidneys. I became really depressed after that. It was so bad I was wilting away and dropped my weight down so low. I am a short person too. I became so nasty with everyone because they were trying to help me, and I was giving them this self-pity act, "Why me?" I finally got better over time. To this day, my incision still has not completely healed as I have a crease in my stomach. I must carefully clean that area and dry it because sometimes I end up with a yeast infection in that area that goes under the pouch and causes a bad rash. My doctor ordered Nystin cream to help clear up the rash.

I am sorry to learn what you have been through and the courage you have shown to go through as many surgeries as you have. I thought I had a rough time, but then you read about someone else and what they have gone through much more than me. I think a company by the name of Cymed will build you a wafer and pouch for your innie, but to be sure you should call them and check because I could be wrong. Convatec also has ostomy nurses on call that could give you help or see your own Ostomy Nurse. Someone should be able to offer you advice on how to handle this for you. Good luck.
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CAW
Feb 21, 2012 3:09 pm
Pinklady, I am so sorry to hear of your issues. I try to keep a great attitude and do the best that I can, but it is frustrating because there are so many of us with stomas and it seems no one knows how to treat us. We have to arm ourselves with information to ensure you are not harmed if you have to go to an ER. And the surgeries that are meant to help your problems end up making things much worse in other areas.

My primary doctor asked me one day if any of the specialists had warned me of possible side effects from the chemo and radiation. I just laughed and told her that if they did, NO ONE would ever have it. My husband and I had both tried to talk the colon/rectal surgeon into having the surgery first to allow me to bypass at least some of the chemo and radiation. He said I was too young to automatically opt to have a colostomy without trying to save it with treatment. He said the colostomy surgery was just salvage surgery after everything else had been tried and failed. Looking back on it, I think I would have been so much better off if he had listened to us in the beginning.

Even the colon/rectal surgeons didn't warn us that the surgeries could possibly make things worse rather than better. I am with you on going from a great stoma to a big fat ugly one. Mine is so ashamed of itself it continues to hide. It sure seems like there would be a better way to treat our issues and find solutions rather than to cut and chop on our already compromised bodies. But life is what it is and I wouldn't be alive without it, so I guess I need to find a way to accept it and learn to live with it.

I have gone to ET nurses and even to a new ET Center where they are supposed to have the best of the best. We went in with high hopes of learning something and finding the help we so need. We left very frustrated and empty-handed. The ET nurse that we saw had no idea how to help us. Any suggestions that she had we have already tried thanks to wonderful advice from ostomy sites and people's willingness to be open and share their experiences with us. My colon/rectal surgeon has his own ET nurse and she is out of ideas. In our last visit, she said that she thinks that flushing is our only option. I do not see that as an option at all. I know there are lots of people that do it every day, but I am not one of them. The force of the water running in makes me feel like my colon is going to burst like a balloon. I get cramps so bad that I just want to curl up and cry. And it takes up to 2 hours to get the water and all to come out. She even suggested that I do it early in the morning and let the bag hang as I cook breakfast, vacuum, or go about my daily chores. I cannot even imagine standing in the kitchen cooking with poo running down my leg. The thought literally makes me sick to my stomach. But when nothing else works, I have reverted to flushing, but it is not something that I can tolerate on a constant basis. We have adjusted the water levels down to a minimum thinking it would ease the pain, but if you get too low, nothing happens except for the extreme pain and you end up doing it again with more water to find some relief.

It is so frustrating that with all of the people with ostomies all over the world, we all have our own journey trying to seek help. Our best resource is from others just like us. It is a shame that the surgeons, doctors, and ET nurses don't have any practical experience to back up the information they pass out. It is all just textbook knowledge written by more people that don't know. Wouldn't it be great to have ET nurses that have been there and done that or a surgeon that truly understands the issues that we face? I have talked to the various help lines at the different ostomy suppliers, and to date, none have been able to find a good solution for me. Regardless of what I try, the poo sneaks under the flange and I have to change it whether it has been an hour or a day. I rarely get a flange to last more than a day or two because I cannot take a chance on letting my skin break down.

I will continue to try to find a solution, and until then, I am hopeful that a relocation of my stoma can't be any worse than any of my previous operations that have failed miserably. I try to look at my stoma like I do the rest of my body; it isn't as young as it used to be, so not being perky as it was in the beginning may be a fact of aging, and it is just the price I pay for being alive. I would never trade my life here with my kids and grandkids, even as it is to be 6 feet under.

Again, thanks for your comments and good luck in your ventures. I pray your kidneys maintain.
Help_Me_Rhonda
Feb 22, 2012 3:45 am

First, I just want to say to both of you who have posted: Bless your hearts! I know we have all been through one kind of hell or another, and I am thankful to have found a place like this to share and seek advice.

Recently, I ran across a lady who has an "innie" stoma as you called. She had some technical name for it, but either way, it's a problem. My little friend is flush with my skin, which causes all kinds of problems too as it is also in a crease with a large hernia on top of it. My issues are probably nothing compared to trying to find a pouch that will stay put for you. This lady I met told me that she uses an appliance from MARLEN. She said they are the only ones that make a pouch that works for a regressed stoma. She had been working with a stoma nurse in Frankfort, KY. She told me that this lady has been in this business of helping people with stomas for around 30 years. She is supposed to be one of the best. I don't know if speaking with her would help you, but if you want, I can try to find her phone number. I have been thinking of seeing her myself to see if she can help me find something to keep from living in fear of leaks all of the time.

I have to use the Eakin Cohesive Seals also, but I put them on the pouch and then apply both to my skin. It's the only thing that keeps me from needing to replace my pouch every other day. My skin breaks down also, and it burns pretty badly. I always rinse my pouch out to rid the excess that sometimes gets under the edges. The seal keeps it from going further for at least a day or two. When I know that my skin is getting raw, sometimes I put a little baby oil in my pouch. It helps things slide down without building up at the opening, and it also coats the skin a little. Yes, if there is any crease or anything, the oil gets under there and makes the pouch come loose sooner, but usually, it just goes to the area that has lifted a little on the inside edges. The baby oil has actually helped a lot more than it has hurt.

I know Edgepark has MARLEN pouches. I don't know anything about them, but I did ask for a sample to be sent to me yesterday. I should have it in a few days. If there is anything I can do to help, let me know. I will locate the name and number of the stoma nurse if you want. I will also touch base when I receive my sample if you want.

I wish you the best and honor your stamina and tenacity in all that you are going through.

Best wishes and great big hugs!!

Rhonda

CAW
Feb 22, 2012 2:35 pm

Rhonda,

I would appreciate any and all forms of help that I can get. I am afraid if I don't get some relief somewhere I will end up with another blockage and I don't want that. And at the same time here in the good old USA, our supplies are extremely expensive and when you use more than the approved amount it is all out of pocket.

I did have an ET nurse give me some Marlen samples. I liked the way they worked except my skin broke out and I was unable to use them. The idea was great and it was so soft and seemed to stay in place but I got such a burning that I had to remove it. When I did, I was so disappointed. I guess we all have different skin and I just happen to be so sensitive that lots of items just won't work for me. Good luck with yours because like I said, I loved the feel of the material they used and the way it adhered to my skin.

Thanks for any information you are able to secure.

Carol Weekley

 
Staying Hydrated with an Ostomy with LeeAnne Hayden | Hollister
Help_Me_Rhonda
Mar 01, 2012 1:34 pm
Hi Carol,

I found the phone number to the ostomy nurse. I sure hope she will be able to guide you in the right direction. Her name is Liz Rinion. I think she is only available on Mondays but I am not sure. Her number is (and I hope it doesn't get deleted on here) I will type it out in spaces....
859 313 1000

I have not received the Marlen samples. I did get some samples from Coloplast. They have a built-in seal so that would save me money on the Eakin Cohesive Seals but they are really difficult to drain. It is a comfortable pouch but is noisy and as I said it is hard to empty. I wouldn't order them but I am going to look for others that have that built-in seal. I like it so much better than the other seals. It is a hard, ongoing process trying to find just the right thing. I've just settled but now am on the search for something better. I hope to try the Marlen pouches. Thank you for your input on those.

I will keep my eyes and ears open for any info I can find. Best of luck to you!!

_Rhonda
CAW
Jul 20, 2012 2:44 pm

Thanks for sharing your stories and suggestions. I just feel so frustrated at times I could just scream, but I know it will do no good. I had an appointment with the colon/rectal doctor and the day before they called and canceled. They said my original doctor is coming back to the states and specifically back to his old practice, and the current doctor no longer wants to treat me. Their quote was, "He doesn't know enough about you and feels it would be best for you to return to the previous doctor's care." This doctor has been treating me for over a year and has performed 3 surgeries on my stoma. He is in the same office as my original doctor, and he even saw me in the hospital on weekends when my doctor was off. How can a doctor just drop you? It isn't my fault it took him 3 different surgeries to fix the real problem!

Needless to say, I am counting the days/weeks/months until my old doctor returns. I pray I can make it until September when he is supposed to be back in practice! I need a doctor in the worst way but am too afraid to go to another one since we are down to weeks until he returns. He is an amazing doctor, and I will go back to him as soon as I can, so I don't feel it is fair to any other doctor to have a one-time meeting. Our local ET nurses mean well, but I have learned more from trial and error than we did from them. Perhaps I have just had the wrong ones.

You all take care and know no matter how bad my stuff sounds, I am sure there are plenty of others suffering much greater than I am! I thank God for each day I have because none of them are guaranteed. Take care!