Removing my colon wasn't all I was promised

I figure this is the only place I can complain about this.  Am I the only who perhaps expected more out of having my colon removed?  Let me give a little background:  my first doctor wanted me to have my colon removed and sent me to a surgeon, which was a long drive away, without telling me he was sending me to a surgeon.  My family and I were led to believe I was getting a second opinion until this doctor started describing the surgery and we asked why.  I refused to have it done at that time, which led my doctor to drop me and I received no treatment for about four months.  I had a stroke as a result.  I really don't regret this, as I don't think a doctor should tell a patient what to do and we had not tried all medications yet.  I was particularly interested in Humira, which ultimately worked for about two years, until it didn't.  I had no choice but to have surgery when I ultimately did, which resulted in another trip to the same surgeon, only to learn my insurance would not cover this visit even though I expressly asked before making the long journey.  Luckily, I was able to give surgery closer to home.  I recall being told about some of the issues I would have without a colon, such as needing to wear some kind of pad at night, sexual problems, and soft formed stools.  As I told the doctor when he explained these to me, I was past the point where it was a decision on my part.  First of all, having an ostomy was more unpleasant than I could have ever imagined.  Part of me felt vindicated that I put it off so long, but still I was miserable for five months.  I had to change it far more frequently than I was told.  It hurt constantly.  The skin around it was like raw hamburger meat.  At one point I slept without it one night based on the idea that my skin there could heal, and instead I had a wet, miserable night and the skin did not heal.  I had almost constant leaks.  The nurses that the home health service kept wanting to send me didn't know jack.  The friend of a friend who has an ostomy told me not to eat or drink hours before I need to change the bag so I would not have any coming out while I was doing it, and the nurses did not know this was necessary. 

I finally got the reattachment surgery and although it is far better than an ostomy, it still has its bad sides.  I like to say it is slightly less unpleasant than having a colon.  The thing that really gets to me, and I suspect that it partly has to do with the fact that I have always had loose stools, is the little bits that remain on skin that I have to use baby wipes and Q-tips to clean.  It takes me forever to clean after a bowel movement, and I feel bad when I tie a public restroom up, but the amount of misery that those little bits of stool can cause is unbelievable.  Sometimes, especially in winter, my hands end up chapped because I have to wash them so frequently as part of my clean up.  First I get individual bits I have cleaned off my body on my hands, then I have to wash those off so that I don't risk getting them back on me as I clean further.  I think this whole process is what gets to me.  No one warned me about this, nor that since the stool still contains your stomach acids, it would burn like hell.  While I am not sure I would have wanted to know this in advance, no one volunteered the information. 

Then there was wearing a pad.  I had seemingly endless yeast infections for at least a year until I came here for help.  While I ultimately didn't follow some of the suggestions (since they didn't work for me), one person asked how frequently I actually need a pad.  When I realized it was only about every two months, I quit wearing it and some of my misery was gone. 

As far as my menstrual cycle, now that I don't have a colon my skin on my butt cheeks bleeds during my surgery.  My doctor says it is just hormonal and it is nothing to worry about, but it sure doesn't feel good. 

Lastly, there is my ostomy scar, or more specifically where the adhesive portion attached to the skin.  I must have some sort of nerve damage there, and I need to wear loose fitting dresses sometimes because having the waistband of pants or a skirt touch it just hurts too much at times. 

I know that this has been long, but I also know that this is the only crowd that will truly understand.  Does anyone else have similar feelings?

Original Post

Similar feelings? Yes. Me. 

But I got rid of all of it and went to an end ileo. Which is similar but different than the temporary ileo(loop) you had. I had one of those too. Miserable. It's a reason I waited two years to have my cursed pouch.  I consider it cursed it caused so much misery. My end ileo is a perfect ending. Many times I thought as pressure built up while doing something such as driving home from work how much easier it would be to just go in a bag. I was right. It is easier and I cannot even feel it. My pouch was slowly killing me. I can look back and see that now. Any other type of pouch would have been problematic if I tried it. Which I couldn't because going thru that process would have taken more of my health away. And if it didn't work I would definitely be in a bad place health wise. I didn't have time to mess around. 

But.  If the j pouch is a problem you could look into a bcir or kock pouch.  Look em up on the internet. People have had success with them. Me. I didn't want to be sticking catheters in to empty. 

I'm good wearing an appliance.  Some people have issues with just the idea of it. I was one of em at one time. Once I came to terms with it I was completely ok with it. No one knows I wear it and it works well. No problems whatsoever.  Just peel and stick.  I'm one of the fortunate ones.. It has made me 100 percent better. And if it can do that.  I'm good with it. I don't have to watch anything I eat.  No pain. (I don't miss that at all lol) and it was painful. All consuming painful. Day and night.  Everyday. I've had mi e 2 and a half years now.  I feel it has been there all my life I'm so used to it.

Living the way your living was never explained to me either.  In the end they just send you out to fend for yourself.  I had a good surgeon.  She stayed with me all through my miserable years. She fixed me. And I'm grateful for it.

Sorry. Rambling now. 

But your not alone. 

Richard. 

It’s a huge transition and I can understand why you feel like that. It a big change from what other people, with normal colons, deal with. 

I have to wear a pad at night too, bc sometimes it can leak a little. I also found that Balneol helps wiping- it’s a a cleanser that helps a lot. It so gentle and can get stuff that baby wipes can’t clean. You may want to try that. You can get it from Amazon. 

Made you talking to a counselor or someone about this? Or a support group? If helps a lot to vent in this group but sometimes additional counseling helps too. 

MCH, please don't be annoyed with me if you have already tried this and it didn't work, but are you taking Metamucil (psyllium husk fibre)?

Without it, my j-pouch would have been miserable. I found it cushioned my BMs, neutralised the stomach acid, and (somewhat) reduced the sprinkler effect by creating a sort of gel around whatever I had eaten. (I took a heaped teaspoon of the fine powder version in minimal water, gulped down quickly, immediately before eating.)

I dread summer with numerous BMs, cos it's impossible to keep your nether regions clean. How many times I have wished for a bidet! My best holiday ever was in Japan, where almost every toilet has an inbuilt bidet. It was heaven.

As far as the person suggesting taking Metamucil, my doctor has me take three tablespoons of Benefiber, which I take in the morning.  They suggested that it take it with each meal, but the problem was that it made me have to force my bowel movements and that caused me additional pain, so I take it just the once a day.  I appreciate your suggestion, though, and perhaps I should address this with my doctor as well.  

Kushami, you can buy a portable travel bidet from Amazon, called Brondell GoSpa for approximately $10 U.S. dollars, or look in a health store that sells special medical equipment for home use. The travel bidet is basically a plastic squeeze bottle with a special angled nozzle. I used one after my reversal and it was so helpful that I bought an attachable one from Amazon and had it hooked up to my toilet and the water pipes so I could have hot and cold water to cleanse after each BM.  Amazon sells them for approximately $50 to $80 U.S. last time I checked.

First I used the hand held bidet bottle, then a sprayer with the water source from tbe toilet and finally I got a bidet seat. Each way worked better than using wipes. My husband put in an electrical wall outlet by the toilet so I could get the bidet. It warmed up the water and was the best. Any way that uses water should help you feel a lot better.

I use liquid hand soap that contains olive oil and it helps with my hands. I also use hand lotion containing coconut oil at least once a day.

You are right. They didn't tell me as many details, about life after the surgeries, as they should have. Knowing what to expect ahead of time would have helped. I found this group soon after my surgeries and don't know how I would have made it without everyone here.

My j-pouch ultimately failed so I now have a permanent ileostomy. It is not horrible like my my loop ileo was. Richard is right in that I feel much better than I did with my j-pouch. I'm not suggesting you get rid of your j-pouch but am letting you know if you do need to do this in the future that it will be better than your temp ileo.

I am having my final takedown in 4 days so cant add much to the Jpouch side of things yet but I can say this. I am sort of an obsessive person when it comes to change and operations. I feel like I HAVE to figure it out. I bet we are pretty similar in that respect. Being a medical provider I find it easier to identify with folks in that way. I think I would say to you that you went through 2 completely different transitions in a relatively short period of time and folks tend to fall into a "new normal" gap once they get used to things. I had an end ostomy for 6 years. for the first few months, maybe even to a year, its just so new and shocking its hard to see the big picture. I can say though once I found the right products and supplies to take care of it, everything smoothed out and became old hat. I suspect it will be the same with the Jpouch. just a long obsessive year or so getting used to it ha. I agree with one of the above posts, you may be surprised if you can find a GOOD, reputable counselor at least until you figure out what will be "normal" for you. 

     In regard to not being well informed before hand, I think your surgeon may have did you a little of a disservice. I work in general surgery and people are SO different. some people want to hear every little detail, some would rather not know ANYTHING aside from risk and such. It is their duty to gauge that on the fly. I think the big thing is to ask tons of questions if you have them, even months to years out. that is what they are paid for. My surgeon sat with me as long as I needed and went as in depth as I wanted to go. He did say the most important thing for Jpouch surgery is to understand the transition period is often long, up to a year or so and a patient needs to be committed. Surgeons should understand this is a HUGE life changing operation and need to spend more time with these cases as opposed to just whipping out an appendix or gallbladder ha. so it seems your surgeon should have been a little more up front. 

     Your post seems like a very appropriate vent ha. most everything I read I bet if you get asked to read this 6 months in the future, your outlook will be a lot different and you will be doing better! I wish you a blessed recovery and in time I bet you are much better! have the right people around you, annoy your surgeon if you have to, find the products, supplies, bidet, creams, hand soaps etc through your own personal experience that works best for YOU and roll on with your new normal.

- Native

Wow MCH,

I'm sorry you are having such a hard time. I don't think I got the total low down on what life without a colon and with a j pouch would be like from my surgeon or my GI either. I don't think someone who has not walked the walk would know how bad the butt burn is or how painful the gas can get for us. Alot of what some of us go through seems to be three fold what a people that still have colons deal with on a daily basis. I was very lucky because I found this site when my GI first told me that having my colon removed was the only way I was going to get well again, and that I'd be a good candidate for a j pouch.  I guess we need to advocate for ourselves and do the research. Our lives are different now, but mine at least is far from bad. I feel much better on my worst day now than on my best day with UC. Just keep your chin up and ask questions of these wonderful people on this site and they will help you find the answers you need. Good luck, I hope you things start looking up for you. 

 

MCH posted:

As far as the person suggesting taking Metamucil, my doctor has me take three tablespoons of Benefiber, which I take in the morning.  They suggested that it take it with each meal, but the problem was that it made me have to force my bowel movements and that caused me additional pain, so I take it just the once a day.  I appreciate your suggestion, though, and perhaps I should address this with my doctor as well.  

 Oh dear, that must have been disappointing for you. Benefiber and Metamucil are made of different stuff, so maybe still worth a try. I hate pain! I think since experiencing the major pain after my operations I have become more sensitive to it and more fearful. There's something horrible about pain relating to digestion / going to the loo as well. Having to force is horrible.

My j-pouch worked pretty well up until 4 years ago, when it went floppy. I spent six months trying everything my surgeon, GP, stoma/pouch nurse and this message board could recommend, and nothing worked. So frustrating when things that worked for others didn't work for me. I got into a cycle of "Why me?" for a while that drove me a bit mad.

Wish I could offer you some new advice. Can only send kind thoughts.

Sarah

Winterberry posted:

Kushami, you can buy a portable travel bidet from Amazon, called Brondell GoSpa for approximately $10 U.S. dollars, or look in a health store that sells special medical equipment for home use. The travel bidet is basically a plastic squeeze bottle with a special angled nozzle. I used one after my reversal and it was so helpful that I bought an attachable one from Amazon and had it hooked up to my toilet and the water pipes so I could have hot and cold water to cleanse after each BM.  Amazon sells them for approximately $50 to $80 U.S. last time I checked.

Thanks, Winterberry. I will see what I can find in Australia. I am staying with my dad at the moment and have my own bathroom, so I could hook one up.

While I am grateful for everyone's comments on the bidet (I got suggestions here both this time and a previous time I asked for advice on cleaning up following a bowel movement), I would like to add my experience.  I purchased a portable bidet from Amazon as one person suggested to try before considering installing one in my home.  My greatest difficulty with cleaning myself following a bowel movement is that I have this small pocket, for lack of a better term, where feces seems to stick.  It is not a place that the bidet could get to-I still need to go in and clean with a Q tip.  My physician says it is just an anatomical thing with how I was sewn back together and nothing can be done about it.  Also, people said I could carry it with me and use it at work-let me tell you, none of these people must teach.  There is no way a person could try to use that thing and get out of the restroom and back to the classroom, absolutely no way, before the bell rings.  So I thought I would add these thoughts, both for people who suggested it to me so that they can understand perhaps why I ranted, and for other people considering using it.  It seems as though someone needed to include a con for bidets when others are pro bidet and I wanted people to be able to make a more informed choice.

Also, I found Native's comments very helpful.  I think we as members of this forum need to hear from people that are in the unique position of being both surgeon and patient.  I think there are some nitty-gritty details that a surgeon simply cannot know; he just knows what the official literature says.  Also, as far as my surgeon gauging me wrong, he was actually doing a favor for my gastro by seeing me.  I had a lengthy drive to see her, and my appointment was at the end of the day.  When she found out I couldn't get the surgery done, she got on the phone to see if the surgeon (who works at the hospital across the street) had left for the day yet and had his employee set me up to see him without his knowledge.  She said he would not mind because he had just done the same thing to her, but I don't blame him if he was perhaps briefer than normal since he was halfway out the door when she called. 

MCH, that totally sucks that you can't wipe properly because of the way they sewed you up. What a nightmare.

I'm sorry for mentioning the whole bidet thing – I just meant it in passing to say that I understood the unpleasantness of not being able to "get clean". In my case, my j-pouch tended to let loose like a sprinkler. I went through a lot of loo paper, and sometimes still didn't feel clean, especially in summer.

Something is definitely not right. You should not have a “pocket” that collects feces, and it certainly is not anatomical (unless you had a pre-existing defect). I have nothing that is sewn on the outside. There is just a ring of sutures inside, above my rectal cuff. I would seek a second opinion from another surgeon if you can. It sounds like you have a fistula or something. 

This definitely sounds intolerable. I hope you get some answers. 

Jan

Although I do not have a j pouch I do have a k pouch and still remember pre-surgery misery.

I always carried a small squeezable water bottle with me (long before wipes were invented) to clean up in public stalls...it made a huge difference to the hell I was living in. Use liquid glycerine soap, but only a drop, in the water if you need to. You can pre-fill with the liquid soap and then just add water in the washroom when you get there or just shave off a few flakes of it from a bar of soap (dollar store sells them in different colors and smells) or use Pears (my fave), add water and shake.

It helps a lot...do not understand the pocket either but then you might need your surgeon to explain it to you.

I will make a comment here...Nothing will ever replace your colon the way nature planned it to function. At best, if we are lucky, we get a functional substitute that is liveable within whatever we consider to be acceptable criteria. 

Some of us can and do 'put up with ' the pain and live with it. Others cannot or will not...that is a very, very personal thing, depending on the personal hell that we lived in before surgery and our own pain and discomfort thresholds. 

But, and I am very honest here, no one should have to live with a horrible quality of life that prevents them from functioning and living normally. Yes, we must modify and accommodate ourselves to our new normal but once past that biological learning curve, we should not be forced to live in pain or hell.

Sharon

I will try once again to explain the pocket.  For starters, people said ask your surgeon.  That is not an option as my surgeon is out of state.  I had to start seeing a doctor in my state even though I have to drive just as far as I did to see the doctor out of state due to insurance not covering it.  I would love to go back, but that is not an option.  I do not recall what my first gastro doctor (after I had to leave my beloved one out of state) said exactly when he examined me regarding except that nothing could be done about it.  I see that someone responded above that there should be no pocket unless that is an anatomical condition I have, and perhaps it is.  Once again, I will try to explain:  when I have a nice liquid bowel movement (since that is about all that happens, and I may try Metamucil as someone suggested but I am not in a position where I could do that today), some of the feces gets stuck in this small area.  I have to clean it independently of the rest.  No mere wiping of the entire area works-I have to get in there with something small, such as my finger or a Q-tip.  Does that explain it any better?  

While I appreciate the comments from SKN69, I am not sure what you are referring to regarding 'put up with' the pain.  Do you mean the pain of an ostomy?  I was uncertain.  Please clarify.  Thanks. 

I understand better what you are talking about...could it help if you have a squirt bottle with long tip (this is easy to make...you just take a normal squirt bottle, melt the tip over a flame or in hot water (be very careful, it can burn the fingers) and then pull the plastic tip with pliers until you have stretched it to the right curve and length to get to 'that' spot without too much difficulty. It would probably need to be a bit curved.  Cool it down in cold water for it to be fixed into shape. You might have to re-pierce the hole in the tip for the size of the spray.

Not sure if there is a solution to the pocket...what can or cannot be done. Is it something that happened during surgery or was it there before?

I would be loath to allow someone up there to cut and try to fix it...fear of worse damage would always be present.

The question of quality of life...Well, I know of a lot of people here on the site that 'put up with' a sh-tload of discomfort, pain or other kinds of problems for a very long time before taking the leap and finding a different solution (as I said, some opted for outside appliances, others had their J pouches redone if possible and others still found that the continent ileostomy was the best solution)....but I Do Not think that this sort of problem requires that sort of drastic measure. 

I am not diminishing what you are going through but a mechanical solution is always better than a surgical one if it can be helped. 

Try the squirt bottle or nozzle first (they do sell a commercial version, I believe, for enemas that may be of use to you...try it...you never know...warm water is best and much more soothing. 

Let me know if it works for you...if not, I will try to think up something else.

Sharon

 

I think I understand what you are saying now, and I do not intend to try a surgical solution.  Again, I merely came on here to vent some things that I do not think people who have not been through it can understand.  I will try something along the lines of the bottle that you suggested.  The pocket is the result of the surgery. Another point that I did not make, although I am sure many have similar stories, is that my ulcerative colitis has impacted my ability to work for awhile, so that is part of my frustrution.  I suppose calling it UC is no longer appropriate, but I do not have another name for it.

It's okay to say we have UC as there are other things it still could do to our bodies. For example there's a form of arthritis but the name escapes me.

There are portable squirt bottles that have a long nozzle. I've seen them several places like amazon or diabetic supply companies. I'm including a link so you can see what they look like.  

https://www.amazon.com/BioBide...eywords=bidet+bottle

 

 

MCH, this is late (I'm new to the site and catching up).  I wanted to add that Benefiber did very little for me, but Metamucil stopped my output from being liquid.  On the same day.  It's very different.  I know use just Psyllium seed powder; cheaper and doesn't taste.  

Good luck; your life sounds very hard and I feel for you.  And thanks for posting; this thread has been helpful for me too.

Mysticobra, thanks for the Kock pouch and the BCIR suggestions.  I didn't know about these.  I got my colon removed 1/6/17 and the J-pouch takedown August 2017, so I've had the J-pouch about 1.5 years now.  I don't have much pain but my J-pouch seems to be extremely sensitive to food--as in, I'm safe if I stick to yogurt, applesauce and oatmeal.  I remember getting my stoma first and eating hamburger, french fries and a shake!  Oh my god.  So I will see how things shape up in the next year, and if I still can't eat much, I may ask my (excellent) doctors about the other two.  Or even go back to my stoma.  I could eat.  Thank you.

Just gotta say......I am going to Amazon RIGHT NOW to buy a bidit! I had no idea these magical items even existed!!! I always get SOOO excited when I find good info about new things I can try for my disease that will ultimately make my life a little less horrible. Especially if its info on how to keep the nether regions clean, happy and pretty much pain free LMAO. Thanks guys!

My bidet was awesome and it was worth every nickel spent. My husband removed it after my j-pouch was removed and is keeping it for now. One thing was needed in order to hook it up in our house was an electrical outlet closer to the toilet. Prior to that I used a sprayer that was simple to hook up to the toilet but the water was always cold as the spray wasn't as targeted as with the bidet.

The toastie tush sounds good too.

THAT'S PERFECT! Actually that's so weird that- THAT- wld be a needed request of the object because there's an electrical box RIGHT over top my toilet at the new apartment. When we first moved in, one of the FIRST things I said to my kids when we were scopeing the place out was "why the hell would they put this HERE of all places? Theres no cabinet or sink close enough to here! What do people use in here?......toilet seat warmer's maybe?" Our toilet is on the other side of my bathroom alone away from sight and kinda private from the shower/tub. Theres nothing near it enough to really NEED anything electric right there. 

Ahhhhhhh.....Ahhhh as if the mighty Butt God's were actually smiling down apon me that day! If it wasn there I probably Cldnt have even used it, cuz the toilet here is in such an odd spot.

I have a question regarding using the bidet.  So, I just found it awkward and not particularly helpful since I have trouble cleaning the little internal "pocket"  I have tried to describe previously.  I guess my question, do you just get less messy at using it?  I found that I managed to spray everything I was wearing from the waist down, and having to change those things since they were wet.  Or perhaps the issue was the type of portable one I had.  I am not really interested in getting another at this point, since when I am at home I just wash myself off using water in a basin I keep in my bathtub if I find I really need to get myself clean.

Bidet: I don't know. I used one last summer when in Kaua'i, it was an addition under the toilet seat (which I didn't know you could do!) and it was a soft spray; the one my husband got when we got home is more of a jet.  I can slowly open the spigot and get a gentle jet, or blast it if I'm in a hurry.  I think for you just keep using the basin-water if it works.  What I liked when I first got the bidet: I had hemorrhoids (why won't autospell help me with THAT word??) and the cool water was very soothing.

I think it depends on there Bidet. i got one off amazon and I love it. It doesn’t spray everywhere. My parents got one for me for when I visit them and they got one that had a warm water hookup and that’s pretty cool too but theirs sprays everywhere, similar to what you’re describing.

I find it helps a lot. I still have to work at making sure I’m cleaned out, but once I am, the bidet takes care of the burning/itching that can be caused by the acid on the tooshie. It’s uo to you. Before the bidet I just used wipes. But that’s expensive and can clog up the toilet. This is just so practical. 

You can really target spray with a full on bidet seat.  It really helped me out for a year before I had to have my j-pouch removed.  I had to give myself enemas in order to empty. I adjusted the power of the spray and there was no mess. (When I was away from home I had an silicone enema kit. I hardly went anywhere.) I could adjust the power of the spray and used it around 6 times a day.

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