We have a shelf built into the wall next to the toilet. During my usual two hour sit over the commode this morning, I took inventory of its contents: a jar of coconut oil, a jar of cannabis salve, a tube of lidocaine, a tube of cortisone cream, a half empty jar of 100 Fleet glycerine suppositories (expired August of 16), a tub of Tucks wipes, a box of 12 belladonna / opium suppositories, two magic bullet suppositories, one Enemeez Plus mini-enema, a box of 4 Fleet mini-enemas, a half empty box of silver nitrile gloves (size M), a Kindle, a lighter, and a pipe full of cannabis. It occurs to me as I scan each of these familiar morning accompaniments that I will (one way or another) have no need of any them after next Thursday (except perhaps for the gloves, the weed, and the Kindle).
What is cannabis salve? A cream? What do you use it for?
We have a shelf built into the wall next to the toilet. During my usual two hour sit over the commode this morning, I took inventory of its contents: a jar of coconut oil, a jar of cannabis salve, a tube of lidocaine, a tube of cortisone cream, a half empty jar of 100 Fleet glycerine suppositories (expired August of 16), a tub of Tucks wipes, a box of 12 belladonna / opium suppositories, two magic bullet suppositories, one Enemeez Plus mini-enema, a box of 4 Fleet mini-enemas, a half empty box of silver nitrile gloves (size M), a Kindle, a lighter, and a pipe full of cannabis. It occurs to me as I scan each of these familiar morning accompaniments that I will (one way or another) have no need of any them after next Thursday (except perhaps for the gloves, the weed, and the Kindle).
Next Thursday’s the day the surgeon will remove what’s left of the ovarian tumors while another surgeon performs a colostomy. I can’t help but think how life changing this is going to be, hopefully in a positive way. In a very weird sense I actually feel quite excited about the benefits of colostomy, despite my worries about recovery, etc., etc.
Do any of you have any advice to share about either the procedure or your experiences with a colostomy? I’m told I can slowly introduce foods and can basically eat anything in time. True? Any pointers you have would be most helpful.
Thanks!
I have an appointment tomorrow morning with gastroenterology to get a colostomy. After almost 19 years of suppositories, digital stimulation and hours on the commode, I'm so looking forward to needing able to sleep a few hours extra before work and little take a 15 minute shower and be done! My PM&R doctor brought it up to me during my annual appointment in May and it really clicked in my mind. I'm just really excited for this new chapter and much more freedom, making plans with friends, traveling, etc.
can change bag anywere and only takes couple of minutes to change,any question you have i will answer best i can
Why do you change the whole bag? How many bags do you go through ever day/week/month? I've been told that all you have to do is empty it every few hours throughout the day and then change the bag once a week. Just wondering. That will be one of the questions I will ask the doctor tomorrow. Thanks!
Hi i use a closed bag which you change when needed, I change bag 2 or 3 times a day,They will go through the different types of bags that are available,I tried a few different types and found the closed bag easier for me, So far had no problems with skin, At first had a few leaks but stoma nurse helped getting different bags for me to try, I'm glad i had colostomy made life so much easier,no more hours sat on commode just get up shower change bag if needed and thats it, I get 90 bags a month and all other bits sent to me, my surgury was keyhole so was only in hospital 5 days, and managed fine when i got home, hope all goes well with your colostomy
Hi i use a closed bag which you change when needed, I change bag 2 or 3 times a day,They will go through the different types of bags that are available,I tried a few different types and found the closed bag easier for me, So far had no problems with skin, At first had a few leaks but stoma nurse helped getting different bags for me to try, I'm glad i had colostomy made life so much easier,no more hours sat on commode just get up shower change bag if needed and thats it, I get 90 bags a month and all other bits sent to me, my surgury was keyhole so was only in hospital 5 days, and managed fine when i got home, hope all goes well with your colostomy
Thank you for the advice. I'll take all that into consideration when I meet with the doctors before I have it and the ostomy nurses after.
i need advice I'm 39 and my diagnosis is tetraplegia c4 / 5 for emptying the hose I use diapers once a week with diuretics for that It sometimes need all day I can not use hands so my mom helps
I'm thinking of going over to the colostom
whether this would be good for me most of the day I lie on the bed on my back.
Wow interesting. Really only one drop that helps? Relaxing stomach and bowel? Found it on german Amazon. 45 Euro.
Best wishes!
Yes, 1-2 drops of DigestZen work wonders. Doterra oils are of the highest quality and effectiveness, but their marketing makes them very expensive. I also use their "Liquid Morphine", a blend of five topically applied oils for pain relief--works on large and small sore joints when nothing else does either systemically (pills like opioids) or topically (lotions like Voltaren). I put my oils into a roll-on glass jar made for this purpose.
I am copying my reply to JohnDavis in Introductions so the information is located optimally":
Very helpful review, John! Many echo your success with the Peristeen system. But price, at least in the USA, makes it unavailable for many who would like to try it. Bowel management has definitely been the bane of my SCI experience, as I was unable to manage a traditional enema and could not afford to try Peristeen. In my rehab I never learned to get on a bowel program, and injured myself trying to do digital stimulation without direction. Eventually I was able to control things erratically with this method, but had frequent (3-5/week) bowel mishaps. This impacted my social life greatly. Having rheumatoid arthritis with major hand function loss made this process increasingly difficult. Because it was necessary for me to have a colostomy (for reasons unrelated to SCI), I now have achieved better management, i.e., very few bowel mishaps once the learning curve was passed. While I would never have chosen a colostomy to manage SCI bowel incontinence, I had decided that I would embrace it for medical necessity of any kind. Many SCIs who have had this procedure either by choice or necessity have felt that it was advantageous. Any such surgery has its risks, so one doesn't choose it lightly. But it has made my bathroom life simpler and less time consuming, and my digestive process improved because I was no longer constipated. And getting diarrhea from a stomach virus or some such no longer shut me down completely, unable to care for myself. My hand function has worsened, but I am still able to completely manage my own bowel care. When/if I am unable to live independently and my bowel care has to be performed by another person, the colostomy would have been necessary for me anyway. If anyone is considering a colostomy for SCI bowel management and would like to ask me questions, please respond to my copy of this post under the heading "Colostomy advice anyone?" in Bowel.
Mikeq, your post will be legendary and is most helpful!!!! It is kind of a miracle that we can live so much better with this operation, and master charming the "snake" when making bag changes. I would add that some people will still need laxatives or fiber additives with a colostomy. I actually ate a normal meal--bowl of soup and a Reuben sandwich--2 hours after my surgery because I was hungry and no one said not to eat. It went fine! But it took 10 months to stop eliminating also from my colonic remainder because the surgeon didn't clean me out properly. Learning what equipment fits you best is a critical part of the process, and a good ostomy nurse is most valuable.
wavewolf , how should the doctor have cleaned you out correctly before the surgery?
Not before the surgery, during. I had a permanent (irreversible) colostomy. The bowel is cut, and active part is brought out of the abdomen side--it is your new anus. The remainder is usually left inside you, but there is still poop in it. For some reason they do not have you do a coloscopy-type prep before the operation, which would leave an empty bowel. I suppose it is because that destroys the intestinal flora, which would be an added challenge to healing. Instead, they flush you out. Well, my remainder colon was so full that apparently it was too much work to clean it out thoroughly, so I continued to excrete out of new and old places for 10 months. It was not pretty. If medically indicated, the remainder colon is removed and the old exit sewn closed. That is a much more complex operation, often done later. If the remainder colon is left inside, it continues to spew out dead lining cells and intestinal mucus in small quantities, but that can be easily managed by wearing a pad. TMI?!!!!
And I only could have a Ileostomy. This is much more complex and not so easy for use as a colostomy. Or has anyone experience with Ileostomy?
Best wishes !!!
Goisgo,
I know you have suffered as I have with bowel nightmares! One of the reasons I felt resolved to go ahead with the colostomy is that I have two friends who have ileostomies. It is a more complex situation, but their subsequent bowel management issues have not been worse than mine. The output from an ileostomy is always liquid, because the large intestine (colon) which removes water from the stool is completely removed. So if the bag leaks, it is a mess. Fortunately, it is easier to detect when the bag is getting too full--the main cause of leaks--than when the storage is not palpable, and so potential mishaps can usually be caught before they happen. This is true for both ileostomies and colostomies. There is a learning curve to find the right devices to fit your body, and for the abdominal skin to get adjusted to the adhesive. A stoma nurse will help you throughout the process, and the device manufacturers were also a source of great help to me. I was very concerned about skin issues, because of sensitive skin that is easily irritated. But very quickly after the operation, my skin adjusted and it has not been a problem. Hygiene and gentle care is important, and finding the device that fits best. You may need to adjust your diet for less fiber with an ileostomy, especially at first. Recently I have been taking antibiotics which caused extended severe diarrhea, similar to output of an ileostomy. Before my operation, this would have been an absolute horror to manage. With the bag, it is no big deal!!! That says a lot, doesn't it?!
No, not TMI. It was just the information that I wanted. Thanks.
Another question. The new exit is always on the left lower tummy, isn't it? I'm asking because my amputated leg is my left one. And I have clonus (kicking) on that side. And sometimes I have spasms that caause my stump to clamp against my tummy. I'd thought about a colonostomy, but I think I would have problems that other poeple don't have.
Hello, I'm a C5,6 tetra since 1986. I just got a brand new colostomy 2 days ago. My bowel routine was getting ridiculous and I believe this is going to improve my quality of life. I'm trying to figure out what type of bag will be the easiest for me to remove and replace. They only have one option here at the hospital and it's difficult for me. What type do you guys use? Thanks for any info.
Hello, I'm a C5,6 tetra since 1986. I just got a brand new colostomy 2 days ago. My bowel routine was getting ridiculous and I believe this is going to improve my quality of life. I'm trying to figure out what type of bag will be the easiest for me to remove and replace. They only have one option here at the hospital and it's difficult for me. What type do you guys use? Thanks for any info.
I have found Coloplast (manufacturer) to be fabulous to work with! Excellent guidance from various customer service reps to find the right device: it takes time, trial and error. They offer a multitude of options. I feared the "failure" of the bag to stay intact after, like you, going through ridiculous humiliations and grossness with my bowel management (couldn't call it a "routine"!). Coloplast product quality/security has been 100% excellent. If you have leaks, it is the technique of attaching the device that needs work. Also, Coloplast designs are outstanding in their attention to details that matter. As a C5-6 tetra, hand function is an issue: the wide velcro bag emptying feature is easy to use with limited hand function (I have severe RA, one thumb totally disabled). I favor the two-piece bags as easier to put on by myself. The one-piece bags are less bulky, but it's hard to line them up onto the stoma without a direct line of vision, not an issue if you have a carer. I also favor a bag that can be emptied rather than replacing a full, sealed bag. Sealed bags have to be replaced daily if not more often. After initial skin healing, I find that skin stays healthier if I change the bag only after 3-5 days, sometimes a little longer if I am not sweaty. You need to change the bag if you smell something ominous or have burning feeling (even without sensation in my saddle area, this pain comes through), or by 5 days. I clean the skin area after bag removal with paper towel (doesn't disintegrate like toilet tissue) and warm water alone. If you use any skin cleanser, the residue may diminish the adhesive's effectiveness. I have used "surgical soap" (labeled as such, gift of one of my surgeons) to clean really yucky mess, and that worked fine if well rinsed off. For prevention of skin infection, after cleansing my entire skin area I spray it with Nixall (hypochlorous acid) and let it air dry thoroughly--very gentle and marvelously effective (...expensive but good value). Then apply the adhesive barrier, then the XL tape strips, then the bag. The tape strips secure the barrier very well, and have reduced leaks through better fitting for me. Be prepared with paper towels/toilet tissue to catch emerging bowel content during the process of bag change! You will learn when your ostomy is less active and mostly can time bag change accordingly. It takes a while to get the technique down, so allow time, be deliberate, stay positive, and live with less stress and embarrassment. Fortunately no one ever "dies of embarrassment", but stress can be deadly over time!