I got a colostomy 15 years ago due to anal cancer. I had 35 radiation treatments and 3 rounds of chemo. No problems until last year. Had an emergecy surgery for a low bowel obstruction. Didn't fix it or it happened again. I ended up using nutritutional supplemants thru a pic line and had another surgery 6 months after the first one. At that surgery they took out even more of my intestines. My stool have always been loose and I had a left decending ostomy. After the surgeries it was worse. Now I seem to have soft and liquid stool but not runny. It is very loose and soft. I have lots of gas and have had to change my bag more often and have had gas blow outs. This is all new for me after the surgeries. I use the eakin seal but have a hard time often getting things to stick since I have a scar that just about closes us my navel. Any ideas on the gas production and type of stool Hi Betty, For gas, I would strongly suggest keeping a food diary to see if any specific foods make it worse, then either reduce or eliminate those foods. I have other tips and suggestions in this article: https://www.veganostomy.ca/ostomy-pouch-ballooning/ The thickness of your stool may very well be "normal" considering you've lost some intestines. You may be able to thicken things up using dietary approaches (i.e. increase starchy foods), but it could also be related to medication (if any) you may still be on. Just your friendly neighborhood ostomate. I have had my ileostomy since the beginning of December. I had a hysterectomy and the surgeon perforated my bowel, unbeknownst to me. I didn’t show any signs until about 4 days post surgery. By that time I was so septic I had stool all the way up in my mouth. Needless to say, I had to have massive abdominal surgery and a loop ileostomy put into place. I was in a coma for 3 days and the hospital for almost the whole month of December, which I barely have any recollection of. Getting to my point: for the last couple days I have been having very loose output, which is not usual for me. The last two nights I have had to get up 3-4 times to empty my bag. Yesterday it thickened back up a bit but today it hasn’t. I take lomotil twice a day and drink premium protein every morning. I have tried the applesauce and bread trick and they may have helped a bit but I am still dealing with a ton of output as of now. I called my surgeons nurse and she suggested increasing my lomotil and to take a fiber supplement, which I went and got. I told her that I could see my stoma and it was also descending at times. There is also a lot of erosion on my wafer now. She assured me it was ok, that this was common. Of course it was my docs day off so she will have to fill her in in the morning. I just changed my bag yesterday, which is something that causes me great anxiety. The nurse suggested I change it again but 1) I can’t get my stoma to not be active and 2) I am worried about what it will do to my skin. I have no more adhesive removers, they come tomorrow. I do have stoma powder if I need. I am hoping this is a temporary problem and will clear up soon but how do I change a bag when my stoma is active and what about my skin. I have no support or anyone to talk to about it so I am hoping someone can reply. Thanks for listening. Hi Sarah, I think you'd find a lot of support and answers on my support forums: https://www.veganostomy.ca/community/ When my stoma is active and I need to do an appliance change I tend to do the following: - I place a "kitchen catcher" bag off my pant waist so it can collect anything that comes out of my stoma. This article and the accompanying video may be helpful: https://www.veganostomy.ca/how-to-change-an-ostomy-appliance-ostomy-tip/ Just your friendly neighborhood ostomate. Hi Eric and Paulette, You can find some products to stick on your bags and take the gas out. air release vent for ostomy pouch. Online exprés medical supply, inc. Hi Christine, My mom as well has had an ileostomy since August 2017. She was between the hospital and rehabs from 8/17 until 2/18, when she finally came home. This has been the ostomy from hell - leaking up to 5 times a day while she was in the hospital and rehabs, with trained people changing the bag! My sister and I took over, not allowing anyone to touch the bag except us because her poor skin was blood raw from all of the acid and changes. She was on 2 'stool thickeners' which added up to 360 pills a month!!! She also drinks 2 ensures a day and has a feeding peg tube. Here are some hints that have helped us along the way: 1) We stopped all pills (immodium and a prescription for diphenoxylate) and started using liquid pectin. It is a natural fruit juice thickener that they use when making jams and jellies. You can get it in any grocery store, or even online. It can be added to any drink, oatmeal, cereal, etc. What we have found is that it only slightly thickens the output. But, the idea that she is not taking 360 pills a month is worth it! 2) Honestly, eating is the best way to thicken it. My mom does not want to eat ever, which is why she also has a feeding peg tube. All of that liquid absolutely does not help matters. But, when we can get her to eat - we notice an immediate difference. The things that work best for her are potatoes. But obviously she is not going to eat a potato at every meal. So we have a constant supply of tapioca pudding, applesauce, bananas, and oatmeal. 3) The type of bag will make a huge difference as well! We use a 2-part system. The seal has a built in bowl, but we use ring barriers as well. 4) The prep is so important .. sting free adhesive remover, sting free stomahesive powder, then all-kare skin prep (it is almost like a glue that helps the seal stay in place!) 5) Finally, what absolutely helps stop the constant leaks is an abdominal binder. It is simply a wide belt that goes around their waist, has a hole for the bag to go through, and closes using velcro. It keeps pressure in all of the right places so the seal does not have a chance to loosen up! I know I babbled, but hopefully some of this helped. Hi Dawn, Thank you so much for sharing these tips! I'm glad you found something that works for your mom! Just your friendly neighborhood ostomate. Hi Dawn, you have adopted a great approach to help yer Mom and others as well. I wish you all the best ileostomy 31st August 1994 for Crohns Christine...In regards to your mom. When I became so ill I could not absorb vitamins or nutrients at all, my doctors had me drinking the same drinks your mom is drinking. They said it does not happen often but in my case it did. The "drinks" were giving me vicious diarrhea. I was always changing my bag. At least 8 times a day. My skin suffered badly. I had no appetite during that time and being hospitalized for 13 1/2 months, I was on a pic-line and those yellow fluid bags full of calories and vitamins and such. When I got out I was 92 lbs. I never missed food at all. However when I got out, I knew that I needed to be eating. Being runny all the time was exhausting. I ate potato chips which also due to the salt, helped me stay hydrated. I also found that when I started watching the food channels cooking shows, I began to crave foods and hence began to make and eat them. Good luck with your mom and tell her we all understand the different struggles with our guts. You are on the right track. Linda My poor sister has the same problem and is now pretty much home bound because of it. She has no colon and very little small intestine left. She had the 1st illeostomy done in Dec. which at that time made her a Jpouch for later use. In April, the wen in to do reversal and the jpouch surgery was found to be a fail so they did the 2nd ostomy which is a nightmare from hell. She has a pic line and has to hook up to iv fluids daily to get a little hydration. Her ostomy runs constantly so between that and the pic line that can’t get wet, she hasnt bathed in months and says she is a freak. She is very ocd and NEAT/clean freak. This has caused her mental state to take a HUGE nose dive. Just no hope and no doctor wants to mess with her any longer. Oh did I say her problems began in 2007 when she had a botched gastric bypass and has had 17 surgeries since and 15 were life saving bowel obstruction surgeries. She is 54. ? Hi Pam, I'm so sorry to hear that your sister has been struggling. I hope she can find some support or solutions through her Healthcare team. It sounds like she's been through so much for so long. Just your friendly neighborhood ostomate. w. But it is your decision.Hi Pam, I went through this for a good year--now into year 4. I go for I.V. fluids for dehydration also- IT is a long haul.. And I am the same way with "the clean thing" There are many medications out there, that may help her. I am now on Gattex injections. IT is new. helping me. But have some issues. If u go to "Marcie" member and read-she may feel at home about it. Not alone. Your health team or find another one--Which I have had to do also--Not every medications works for the same person- but start a study so you and Pam get to know what is going on with some of these -- Some medications like Gattex took me a whole year of study- it is necessary to understand as much as u can so your questions are answered correctly. She may come out of this on her own. many do !! I emptied a good 30 times a day the first year. Now? on a good day 10-15. I advise sipping with a BIG WIDE straw of fluids. You get more into you than you think !! Do NOT drink just water!! All water washes out the salts in our bodies = dehydration too!.. I know what she is going through.. My life is going to infusion3 x a week.. And pray No E.R. visits during the weekend. I had a pic line also did this at home too- But on medicare and they pay in full for me to go to infusion. I now have a power port. So much to learn about our bodies and what they took out and what is left and what to do. I bathed with a pic line. Just if you sit nicely and soak.. Got to wrap it up well. Just have to be gentle with yourself. What I did was, after wrapping u the pic line- I tied a string at the middle and out it around my neck-- Use no soap, or oils, At one time before the nurse came that week, i did this and added some salts to my bath- it was nice. and she cleaned it real good. So try this before the nurse comes in. Now the stomach tube? no- cant bath with that. had that too. But ask the nurse first. she may have something else to add to this trick of bathing in the tub. If u want to P.M. that will be fine. OR go to the lounge-- I will look for you there also. She can get out-- Grab a coffee can and go____ We r al in the same boat for travel-- but some of us r in a different boat like Pam and I. Just got to find a way around it. She will enjoy her bath------ Also after a bath-change the pouch.. Best. Marcie. 2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie.. Hello Pam and welcome. I am very sorry to hear of you and your sister's struggles. This is a real and ongoing challenge. I am not a health care professional.. so take what follows in that light. Always seek more advise from medical people. BUT... I think you need to break this down into two parts. One part of your problem is keeping your sister clean. Is she physically able to stand in a shower? ( none of us soak anymore). If so, then the problem is keeping the pic line and the ostomy bag dry during a shower. I have had great success with Glad Press and Seal: I had a recent foot injury with lots of stitches that had to stay dry. And I have an ileostomy. I was able to wrap both my foot and my bag area ( with the bag attached) in press and seal and shower. Just empty the bag, and while lying down pull out a big enough piece of the plastic to cover that area ( like 10 inches or so). and PRESS it down over everything. It releases really well after. For the pic line ( which I have never had ..so bear that in mind) I think you could cover it in a couple of layers of the plastic sheet..first a smaller one, followed by a larger one. Press it down well over the whole thing and all the skin. This stuff does not stick to my ostomy appliance nor the pretty large scab on my foot. Try it on yourself first. Just stick it over a piece of gauze or something then shower. Maybe just getting clean would be a good first step in your sister's ongoing care. Good luck. Let us know. Press and seal is available in any grocery store... I included the Amazon link so you could just see the package. ( this should eventually be on another thread since its pretty off topic for the name of this thread). Onset of severe Ulcerative Colitus Oct.2012. Subtotal colectomy with illiostomy July 2015; Peristomal hernia repair ( Sugarbaker, mesh, laparoscopic) May 2017. Pam--------go to short bowel support group-she falls into this catorgory…….. I do also even tho I have my full small bowel. Go to Gattex support group also- that is an education also.. Pam will feel at home there also.. There is education out there and it is a must to know. Best to you both and she is lucky to have a sister that is in her corner. I was alone...… except this blog thank god!!! And other supports areas too- it is a help-- IT is what we need.. We find it we learn it.. 2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie.. couple of garbage did the trick for me when my foot was injured. simple.... no fuss n muss. :-)I know lets out this on a different thread!!! 2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie.. Dawn, First off your mom is so lucky to have you and your sister!! And thank God, you both took over!! YOU DID GOOD !!!! some think the profesionals know what they are doing but the text book is not for every one. It Is just ONLY a beginning. ---------------------God,, I remember those raw bloody skin stoma days with them !! Just rip off the barrier an slap another one on. I too was in a nursing home for 2 months.. And yes, I remember those many pills. Great that you got your mom off them. Let the body make its own decisions with the healing. Hope you can find a support group near by- you can have an ostomate come to your home. That plus this blog of wonderful people are a major help- I did it alone for some time--but did have an ostomate come to my home and we r friends now. But she is so busy!! She is my mentor.. But do met up for lunch a few times.. It is so helpful to be with another person of illness to make you feel like a person again. Sending best to your mom and hope this finds her ding well. You did GREAT !! You got her through half the battle!! Marcie...………… 2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie.. I have an active stoma and mostly liquidy output. I change my appliance when I get a chance so no way I can plan when my stoma isn't active. I would get so irritated when I would finish cleaning my abdomen and my stoma would push out liquid, even with a tissue wrapped around it so I improvised. I use a small condiment container like you get soy sauce or catsup in at a restaurant (I actually have the nurses when I'm in the hospital get me a stack) and cut the bottom out to the size of my stoma. I wrap waterproof tape around the bottom so I won't hurt my delicate stoma and place it over my stoma. I push a small amount of kleenex or gauze down in over the opening of my stoma which absorbs any output. I don't stand but lay back on my bed while I change my appliance so the container stays put. The skin protector spray is sticky and that helps keep it in place too. I can clean well, let things dry and prepare my appliance with the container in place. Then I lift it off and position my appliance over my stoma. Works well for me. Windemere, welcome to the forums! That's a brilliant way to improvise! Your technique reminds me of this stoma cup product: https://amzn.to/2UJotKo (Unfortunately, it's not currently available on Amazon, but you can likely find it elsewhere). That product has tabs on the side, which allows you to use a support belt to hold the cup in place. You may be able to modify the container you currently use to work with stoma belts too :) Just your friendly neighborhood ostomate. Actually, since I use it so I have access to my complete abdomen for cleaning, the belt is too wide but it gives me an idea to make a 'belt' out of a ribbon or narrow elastic to really hold the cup against my stomach. I'm going to try a bit of the adhesive goop to see if that holds it more firmly. Thanks for getting back to me.
~ Crohn's Disease ¦ Ileostomy ~
- I wrap my stoma in gauze so it doesn't wet the skin around it while I'm prepping the wafer.
~ Crohn's Disease ¦ Ileostomy ~
Sweet potato mash and avocados work perfectly for me.
Thank you for all the wonderful information.
That are great. You will find great product there.
~ Crohn's Disease ¦ Ileostomy ~
~ Crohn's Disease ¦ Ileostomy ~
~ Crohn's Disease ¦ Ileostomy ~
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