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J pouch or end ileostomy as a FAP patient, please help  

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sjlovestosing
(@sjlovestosing)
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Joined: 1 year ago
Posts: 180
October 11, 2018 4:50 pm  

Hi Blaze,

I just came on board and read your concerns. I had colorectal cancer and had my rectum, anas, and part of my colon removed back in May. The decision, though a hard one, was a no brainer for me. I wanted the cancer removed and was willing to become an ostomate. I did my research on this website as well as at other sites concerning my cancer, and joined this forum before my surgery. Yes, the info can be very overwhelming, but if you take it in little chunks, it helps you to process the information at a slower pace. 

Yes, there is pain, but as John said, the hospital can help you cope with it. I was on the traditional painkillers for one week, and moved on to Tylenol and Motrin, which I stopped taking about a month later. I must admit, the old bum is still slightly sore, but not like it was at first. Perineal wounds take a very long time to heal, but I wasn't put off by it - it's just part of the process. 

There is definitely a learning curve to this lifestyle, but your ostomy nurse will be your best friend. He or she will guide you through the process at the hospital and afterward for as long as you need help. In so far as wearing an appliance goes, after a while you really do forget you are wearing it. It truly is a part of you. 

Ask me if I would do things differently - I would say ,"No." This was necessary for me if I wanted to continue living. My colostomy is a God send - literally. I am so grateful for this second chance at life. Also, the other ostomates on this website, as I am sure you are finding out for yourself, have been so caring, helpful, and kind - I don't know what I would do without them all!

Good luck in your decision, and may God be with you through it all.

Stella


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Blaze
(@blaze)
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Joined: 8 months ago
Posts: 27
October 12, 2018 8:03 am  

@pumbaa and @sjlovestosing thank you very much for your replies it really means a lot that you took time to tell me your story and encourage me with answers to my concerns. I am almost sure that I will go with an ileostomy and hope that after a little time I will be able to live with it without issues. J pouch would be nice but only IF it works really well and that is a risk I am not willing to take. Also, with my illness, the chance of having issues inside my J pouch would be high (developing "the wrong kind" of polyps in there) and then everything would start over again, scoping every few months and removing the polyps and/or possibly surgery again, more small bowel lost and I would end up with an ileostomy at the end anyway because they can't stop my illness from developing polyps if it starts doing that inside the pouch. Maybe it would work for 20-30 years, maybe just a few years but I just do not feel like I want that. I do not want to worry about this all my life. Sorry I ranted a bit again :/


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Blaze
(@blaze)
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Joined: 8 months ago
Posts: 27
December 2, 2018 6:58 am  

Hey everyone! I thought I would update my thread since I am back home for a while now after surgery. In the end, I choose to go with an end ileostomy (total proctocolectomy). The surgery itself went alright (~3 hours) but after the surgery, I had serious bleeding thus they had to give me 8 bags of blood transfusions etc. to stop the bleeding and avoid an emergency 2nd surgery, fortunately, they managed to stop it. I spent almost two weeks in the hospital but I think I managed myself alright, since then I am trying to get used to my new life. It is not easy, especially the Ken Butt part and the feeling of the bag and the adhesive. I just can't seem to be able to accept how the adhesive feels (just the feeling of having it there pulling my skin...) but I hope I will get used to it. Other than that I feel okay,  I can be with my family and that makes it a lot easier than being in the hospital. I use a lot of tips and tricks from this website and it helps a lot but unfortunately, as it turns out in my country only the cheapest bags are available through medical insurance which means no Coloplast Sensura Mio bags just the Alterna ones and of course nothing is supported besides the bags and paste, no rings, no barriers or skin wipes or anything at all... Anyways I am trying to make the best out of it. Atm, I am trying to figure out which belts to get and which ones I can actually get from EU. I would like to buy a stealth belt but no idea if they ship to EU or not and  I really need a good hernia belt as well and I cannot really get good ones here so I would appreciate every tip you could give me. I hope you all are doing well, I wish you all the best! :)


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john68
(@john68)
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Joined: 2 years ago
Posts: 1216
December 2, 2018 9:23 am  

Hi Blaze, That is a Big step and a Big decision made, don't judge life with an ostomy to much on the first weeks or months after surgery as you heal a lot of things will change for the better. The feeling of the bag pulling at the skin is it the weight of the bag or an itch, their are many ways to support the bag from belts to under wear. I know their are things to get used to, I remember my stoma would start to gurgle and move when I started to eat and I did not like the feeling but it soon passed. As well as this forum is their a support group near to you? if so it would be useful to see how other ostomates in your Country are getting supplies and what brands. Most companies will ship to the EU but some times an extra charge is added so I suggest emailing and checking. the very best and I wish you well on your journey.

ileostomy 31st August 1994 for Crohns


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Blaze
(@blaze)
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Joined: 8 months ago
Posts: 27
December 2, 2018 11:40 am  

Thanks John. I am trying to not judge things already, I know I need to give myself time to heal and for things to settle but it is not easy. I want to be able to live again and enjoy living but I do not feel like that will be possible yet. I hope this will change. I am part of a support group and they do help me a lot. In my country, there are 5 companies' products available, of those you probably only know 4 which are Coloplast, Convatech, BBraun, and Dansac. The problem is that they do not sell everything here they actually offer since our government does not offer support as in patients getting the products cheap or free for everything, only for the cheapest bags and for pastes. For example, Coloplast only sells Alterna bags here instead of the newer Sensura Mio products...and I cannot afford to buy Sensura Mio bags out of my pocket.

Thank you for your reply again!


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VeganOstomy
(@veganostomy)
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Joined: 5 years ago
Posts: 2163
December 3, 2018 1:52 am  

Blaze, thank you for the update. 

As far as products go, don't be discouraged by your options. Try whatever you have easy access to and I'm sure you'll find one that works quite well. 

Most accessories, including the StealthBelt, are often available through international shipping. Just contact the manufacturer and see what they can do for you. 

Best of luck! 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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LK
 LK
(@dlkfiretruck)
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Joined: 2 years ago
Posts: 406
December 6, 2018 2:56 am  

Hello Blaze...I had read bits and pieces of your concerns as you were going, but due to eye issues I could not put it all together. Just too blurry.  Things are better today. I understand all your concerns and you have done well in getting your point across. I am very glad to read that you have come thru your surgery and blood transfusions in one piece. I would say all in all you were very lucky.  You had to make a difficult decision but I am sure you will be there to finish raising your son and any other children you are blessed with. When I had the J-pouch, there was no other option for me to choose from. It was done in 1996 and then when I needed the ostomy in 2009, I was very glad for it. The J-pouch kept me in the bathroom more then my ostomy ever has. You can not imagine the lack of sleep I dealt with. I do not miss it for anything. I was looking for ostomy supply information on the computer when I came across Veganstomy. Out of curiosity I checked into the sight. It was here that I received more information then I could have dreamed of.  I was and still am amazed at the amount of information Eric has gathered and gone to the effort to make available thru videos and compiled thorough information for anyone looking...as you know. Eric is none less then amazing to me. My IBD was only really diagnosed in the last two years. I have dealt with issue since I was ten years old. I am now 60. The years with my ostomy have not been easy, but they were not as bad as things were before that. For sure. Like you, I had a  hard time with the feel of the bag attached to my stomach and it just about drove me nuts. I was always aware of how it felt I could lways hear the plastic rattle about under my clothes. I became very self conscious over the sounds and always wondered if there was odor others could smell and not me. Everyone said NO when I asked. However, I looked and found somewhere on the internet, a deodorant I could make on my own from a recipe that was very affordable. It worked and worked well even for the days I had a much thicker output. I could simply slide my hand from the bottom of my bag to the  output and help it thin and at the same time slide down the bag. This made things a while lot more simple for me especially when I was away from home. I learned quickly, to take very good care in  the cleaning of my tummy when it was bag change time. My worries about odor diminished. Even my dogs did not react to the area when they were close by.  About getting used to the bag on the tummy thing. I concurred that by using a warm hot water bottle for about 5-10 min. after bag change, protecting the stoma. This softened the pate and was a time just to sit still and be glad of what it had accomplished in my life compared to what it had been.  As far as sleep goes, I did everything in my power to find out what foods were not helpful to the situation and what were. I kept a food diary and wrote down things like gas and how bad, chunks, food not chewed well enough and what went right thru me, and what did not. This was amazing information. When I ate also became an issue if I wanted to spend more time sleeping. I timed meals and what food when it went thru me and what stayed longer. I cooked my veggies a bit longer then the tender crisp, and my rice with a bit more water in it to also made that softer to digest, and to absorb less fluids thus avoiding a major blockage. My blockages are part of what is wrong with my genetic makeup, I get pseudo blockages. Only diagnosed this year, but I have learned how to manage them so far.  I always drink a lot of fluids, but also learned when to drink the most amounts.  I stop drinking anything about an hour before bed. Blaze, there is so much you can be in control of with your ostomy. Sure there are times you can not be, but when you figure out what works for you and what does not I have no doubt that you will manage things very well with your ostomy. I would suggest because of what is covered and what is not in the way of supplies, that you concentrate on the most important. Skin care.Until about five years ago, I did onto know there were wipes for the adhesive remover and the skin barrier protection wipes. I always just used a simple soap and water to clean the sight, rinsing well. but I also used something called solvo plast adhesive remover, came in a bottle of liquid that I put on two inch pieces of cut up bar towels, it smelled strong, was hard on the skin tho it was safe, to take off the tape residue. You are ahead already by knowing what you can buy and what you can not, what is available and what is not.  I did not know there was so much available to use, and as I could afford them I did just that. Beyond that, I used the skin barrier wipes, but nothing else. It can be done with so little is what I am saying. Leaks, when they happen you are a true member of the club, but the majority of it is listening to your body, itchy around the stoma area, a burning sensation or the feeling of something tickling in the area also. These were my signs that I needed to change the bag and to clean and dry the skin very well. Try not to get down if something happens, but count the days you are there for your wife and son. It is okay to over think things to some degree but try hard not to get wrapped up in the the what ifs...they are not always good for you. Attack the issues as they come, and only as they come. Plan your meals to some degree if you have to be out the house the next day, but other wise, continue to live life the way you best it. I wish you all the best and your family also.  

Linda


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