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Hi, first I want to say please do not become alarmed though I am not saying I am 100 percent that there is no reason to be concerned. Being that said I am with a 18 year old Kock Pouch..actually from reading notes it seems it is a Barnett 2. But for this conversation that probably does not matter. I have noticed recently at different times lately my output being what seems to be reddish. But it is not consistent in that I have not been able to figure out what the cause is. I do not have a qualified surgeon in my State (Oregon) to really diagnose my pouch so well and absolutely not one that has the qualifications to make any alterations surgically. I made a call a few weeks back when taking "Augmentin" a strong antibiotic and that turned into a fiasco as they immediately thought that the darker stool was stomach blood that was digested blood. And yes I was immediately told to have a scope of my throat, stomach and the intestine just beyond....not far. And they did not see anything other than a slight irritation that was likely from the Augmentin and from further research I found that because the Augmenitn kills all the bacteria (especially the flora in the stomach and further down) that it does have a side effect for those of us with no large intestine to see a much darker stool. I also found that after eating my white yogurt (with cultures) that is immediately went back to normal. So again tonight I find myself in a bit of distress as my stool seems to be "reddish". so I am trying hard to think what I have consumed that could have done this. The last thing I ate was a "Cliff Bar" the "Cool Mint" which is a dark chocolate and reading the content has caffeine in it though I have never had issues with that. I looked for some red dye in it but could not find any. Earlier I had some clam chowder (with a couple slices of pepper jack cheese, white cheese but has pieces of red and green pepper}  and crackers. And before that I had some "triscuts" that are flavoured with wasabi and soy sauce. No upset stomach or cramping today. in fact feeling fairly fine. So anyway.. I am trying to stay cool headed and at the same time at least ask here if anyone might have a similar experience. I really wish that there was a surgeon in Oregon that was active but even the Kaiser GI surgeon seems to be very negative towards my having a kock pouch though he has scoped it in the past. I suppose I should have him check it though it has not been so long and everything was fine as far as the lining and such. I do however have a slipped valve and am in the middle of trying to get approval to have that corrected out of state by my insurance company. Sorry for the length of this. I don't know if anyone is awake as I have a habit of being up late but if I think of more to add I will do so. Thanks. and remember..not to panic.. I know if I call the night time line they will send me to the ER where they quite frankly don't have a clue and put me through ridiculous stress and test everything accept what needs to be done.

Thanks.

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Oh! I thought of something else. I would like to eat something that I know does not have any reddish color so I will be able to empty once again and see if the color is regular as things normally pass pretty quickly. I also thought about irrigating but I couldn't find the thingy that has the green ball on the end...sorry, don't know what it is called.

ok... so one hour it has been. I just went again and it all looks normal. I can only guess that maybe that nutritional bar turns that color when it is broken down. I am glad I did not do something rash though my situation may be unique and if I did not know myself this well I would not have waited. Also if there was a local Colorectal Doctor/surgeon that I could talk with locally I would probably be feeling better and that includes having my pouch valve repaired. I am going to be talking to the insurance people more tomorrow. If anyone is out there than I can just say thanks for your indulgence. Nothing like feeling like you are the last one on the planet.

TY

 

WillLive,

 

Hi, you do well not painicking...it is pointless with our pouches because 99% of all ERs do not know what to do with us and will only make us regret going.

Chocolate can contain red dies (they use it to make the chocolate look darker and tastier) and that can die your stool. Also beet (or veggie chips), twizzlers, gummies, wine gums, red jello etc...any red or reddish candies, ice creams, fruit yoghurts, berries etc.

Some meats can too (like sausages) so it does not mean that you are bleeding to death but you cannot ignore the possibility that it is real  blood. A little goes a very long way to make your stool look red...you don't need to bleed a lot to terrify yourself. A couple of well placed drops will do it.

If your stoma is slipped then maybe you are irritating it when intubating and that is what is bleeding. Stick to the yoghurt for a couple of meals to see if it changes anything...

I have granulation on the stoma and it bleeds a lot (a lot means about 10 drops each time but it really looks like a lot on the paper).

If you have a GP ask for blood work to check your white count...if it is low or you are anemic then it may be a sign of bleeding. They can also do a stool test to check for blood. The results are really quick to get and will reassure you if all is well. 

If you go to a medical supply shop or drug store, ask for a 60cc syringe with a catheter tip...that is what I use to irrigate my pouch...fits nicely into the tube, inject the full quantity of tap water and wait for the return...I do it about 3xs day...clears out the pouch nicely.

Keep us posted. 

If you get chills or a fever call your GP immediately and let him/her know

Sharon

Well, Here I am back on my same thread because once again after a pretty normal and even less stressful day I just went to the bathroom and there it was. Just a bright almost too red to even be blood waste. liquidy which is not surprising. The only thing I can think of that I had different ( and my stool has been completely normal in color all day and for quite some time) was that I bought some cookies that are "Pepperidge farm Milano Chocolate Orange" flavour. They are a cookie but they have a thin filling that has the chocolate and orange flavor. I read the ingredients and it is a dark chocolate. I don't feel sick at all and I did have 2 of the cookies and then I made a garlic dip with fresh garlic and yogurt, cottage cheese and cream cheese..for dipping potato chips. I feel so stupid but of course I really dont want to go to the ER because they have no clue here in Oregon to my koch pouch and then they get more freaked out then me. I know if they do that smear test that they it will most likely test positive for some blood but even the smallest amount will do that and I do have an area that will bleed a little bit because of the way my valve is. ( I am finally scheduled to go in for my Surgery in May. ) So I guess I am posting here to ease my mind somehow and at the same time I am going to eat some white foods. I always wonder about the garlic but I eat that all the time and I think that is just a coincidence. I really wish we had a doctor in Oregon that was not only familiar with the Koch pouch and BCIR. times like this it would be great to have that security in case it really was/is serious. Well, at least I only had 2 of those cookies and hopefully as things go through me fast I will be able to tell if it was just the food and not any real bleeding.

Originally Posted by skn69:

WillLive,

 

Hi, you do well not painicking...it is pointless with our pouches because 99% of all ERs do not know what to do with us and will only make us regret going.

Chocolate can contain red dies (they use it to make the chocolate look darker and tastier) and that can die your stool. Also beet (or veggie chips), twizzlers, gummies, wine gums, red jello etc...any red or reddish candies, ice creams, fruit yoghurts, berries etc.

Some meats can too (like sausages) so it does not mean that you are bleeding to death but you cannot ignore the possibility that it is real  blood. A little goes a very long way to make your stool look red...you don't need to bleed a lot to terrify yourself. A couple of well placed drops will do it.

If your stoma is slipped then maybe you are irritating it when intubating and that is what is bleeding. Stick to the yoghurt for a couple of meals to see if it changes anything...

I have granulation on the stoma and it bleeds a lot (a lot means about 10 drops each time but it really looks like a lot on the paper).

If you have a GP ask for blood work to check your white count...if it is low or you are anemic then it may be a sign of bleeding. They can also do a stool test to check for blood. The results are really quick to get and will reassure you if all is well. 

If you go to a medical supply shop or drug store, ask for a 60cc syringe with a catheter tip...that is what I use to irrigate my pouch...fits nicely into the tube, inject the full quantity of tap water and wait for the return...I do it about 3xs day...clears out the pouch nicely.

Keep us posted. 

If you get chills or a fever call your GP immediately and let him/her know

Sharon

 

Dear Sharon,

I just took your advice and irrigated with my large syringe. I did it 3 times. Before I did that I had another amount of stool that was not as red as I imagine there was other food beginning to mix with it. but I irrigated 3 syringe full of tap and now eating a bowl of white yogurt and vanilla ice cream. I also had some "white" clam chowder so no tomato base and will give it another 15 - 30 minutes. You would think by this time 30 years later I would not be surprised but I guess it is partially becoming so used to only eating certain things and then surprise I try something without any thought of what might happen. I know the obvious ones like beets and certain juices but I dont remember the chocolate having this effect. It also could be that I had nothing but that to eat and then it is more apparent, I just want to thank you again for your post as it is very helpful when otherwise I could get all freaked out. But I still feel fine..a bit tired but I have insomnia always so this is not late for me. ok..back to my yogurt. ;-}

 

WillLive,

Do you have any granulation on the outside or just inside of your stoma? It kind of looks like tiny white bumps or little stoma-coloured grains of sand or rice.

They can bleed an awful lot...and the blood is fresh so very red.

Could your tube be slicing into or ripping your valve further down?  Hooking on some part of it? All of that could cause micro tears in the valve or inside the pouch that could also start bleeding. 

The tissue that our pouches are made of is very fragile and bleeds like crazy at the slightest provocation. 

The milano cookies have an orange/chocolate filling...it may use red dye to give it a richer look...you never know.

There is an easy test that I use whenever I am not sure if it is dye or blood (not that this is scientific at all)...I touch a bit output onto the TP...the blood will spread out differently than a dye. It is like the blood doesn't mix with the output but the dye does.

Worth a try.

Unless you are in danger, having dizziness, nausea, have a fever, passing out or in pain I would avoid all ERs that are not affiliated with a CR surgeon who understands us. 

They can (and in my case have) done more harm than good.

Are you having valve surgery in May? Have they done a contrast study to see how things are shaping up in there? 

If they haven't done one yet then it might be a good time to have one done. 

If there are no  k pouch radiologists in your part of the woods then you may wish to speak with a sympathetic one who is open minded and willing to follow your lead.

If you can have one done then PM me and I can give you the specific instructions that I gave my radiologist here...we get great results now.

Hope that you are doing better

Sharon

Dear Sharon,

 

No, not granulated. as for my surgery I am very confident in the outcome. I am going to LA and seeing a very good Doctor/ Surgeon. I actually did have a contrast done and I can not say if the people up here that saw it knew what to look for or if when having it I was positioned in the way I would need to be to see certain angles. I do know the history (obviously) and have given Dr. Schiller a lot of what I had and when I see him I think all will be good. I will try that test as the opportunity arises.  As for the redness it has gone away and the thing is it was more concentrated I think in that it took longer. But all is well. I did lose some sleep over it but that is better than the alternative. Thanks again.

Will

 

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