How can you tell if you need rectal suctioning if living with a temporary loop ileostomy?

Gilda,

glad to hear from you again! although we havn't talked in a while, i do think about you a lot in hopes you're doing ok.

i'm sorry you're still having issues with diarrhea - running to the b/r a lot :(  is the output from your rectum white/brown? the mucous is supposed to be white. if it's brown, it's possible it contains also stools that makes it's way from the upper hole of the stoma to the distal hole and ends up in your rectum.

mucous is something that all our organs constantly produce. when we have part of the colon not in use, even so, it is still alive and keeps producing mucous. i'm not sure about mucous going into the bag, but i think it's possible, but even if so, it won't be much, just teeny tiny secretions - most of the mucous that the rectum produces either finds it's way out through the anus, or like in my case, just stays in. that's my problem, the mucous can be build up for mons and won't come out on it's on, unless i force it out with the help of an enema. it's very uncomfortable. Rosemary has her whole colon still inside of her and not being used and it produces much more mucous compared to my 20 cm of rectum, she can't make it come out on her own, so she has to have it suctioned every once in a while.

i think that if the diarrhea is so severe and affects your quality of life, and after going through all that you have and still be at the same situation like before the stoma, then i think an end ileostomy can really help you with that. at the same time make a stoma that will stick out as much as needed, cause a retracted stoma can really make one miserable. i know you're scared about needing to intubate the stoma again and i totally understand, but maybe just cuz it happened the first time, maybe it doesn't mean it'll happen again (at least we can hope so). 

hope this helps.

Rosemary, that flu of yours sounds to me more like a seasonal alergy - the spring does that to some ppl (i'm one too). i also have been dealing with this flu for the last 2-3 weeks. i have an alergy test scheduled in 10 days to find out what causes me alergy. i think it would be good if you go to an alergy/imunologist (it is usually a dr that specializies in alergies and imunology) and also have that test.

i think that Gilda's brown output is not old blood, cuz her output is constant, so it can't be old blood. if she has bleeding tissue, it would show up as bright red.

Thanks for your replies, Hodaya and Rosemary. Even though it may seem I may now have the worst of both worlds the main good thing about having BM's "both ways" (rectally and thru the stoma) is that I can wear a closed-end pouch and just change it twice a day. I don't get that much output into it because I get rid of much of my waste the "natural way." Rosemary, don't you get really tired of having to drain your pouch several times a day? Also, I find it to sometimes be a messy procedure sometimes. I can usually be "out and about" for hours and not have to worry much about getting a leak or having to drain my pouch. Then again the downsides of my situation are: sometimes I get temporary blockages so I take Valium

eventually I start going and going , get very sore so then I have to take Lomotil and Vicodin to "slow things down. I just don't know anymore, maybe having a "stoma revision" would be wise. Please feel free to keep giving me advice; it helps! Hey, I hope the 2 of you have a great time when you get together soon! I wish I could join you. Remember, if you ever want to visit me in California I have room for you to stay at my house.


Thanks, Gilda

Gilda,

having more output through the anus and just a tiny bit through the stoma is way wrong.... it's not the way it's supposed to be. you have to talk to your surgeon. you're not supposed to go to the b/r that much. your stoma def needs to be fixed.

girls, check out our new israelie ostomy forum, it's becoming so active - i'm the girl on the right :)

http://www.doctors.co.il/forum-4546

 

hey thanks Rosemary :)) you can post in english, lots of ppl there know english and you can talk to more isralie ostomates :) wouldn't that be cool.

Hi again Hodaya & Rosemary, Thanks for your replies. As you can tell, I am still trying to figure things out because I just have to make the best decision possible! One point I don't think either or you understood (probably my poor explanation) is that about 1/2 of the time everything works fine; I have "normal formed BM's - rectally or just a small amount of "pasty" stool goes into my pouch. What is great about this is when the BM's are normal there is no butt burn and because not much goes into my pouch, I can wear a "closed-end" pouch all day, which I prefer to the "drainable pouches." The other 1/2 of the time (maybe 3 or 5 days/wk) though, for some reason I have diarrhea (butt-burn) and eventually I have to take 2-3 Lomotils and usually one 500 mg Vicodin. All "action" eventually stops and next thing you know, I am constipated. For some reason, Rosemary, the Valium always gets things moving again for me (but it does make me "a little" out of it mentally).

What I want to know is, Can I person use a convatec moldable wafer over a stoma that "sticks out?" When I had such a stoma for the first month after my surgery they told me I had to use the type of wafer that you have to "cut to size." It wasn't moldable and I had to use stoma paste, stoma powder and the skin protection spray. With my retracted stoma I just use the moldable wafer and the Eakin Seal and I hardly ever (maybe once every 3 wks) get a leak. Also can you put on a new appliance and bag without being able to look in a mirror. That is one problem I have. If I were in a bathroom stall at a public place and I got a leak I can't just look at my abdomen and line up the wafer with the "hole" in my stomach. Can you apply an appliance with a stoma that "sticks out" without the benefit of standing in front of a mirror? Thanks again for all of your help!

Hodaya, I looked at the Isralie Website but couldn't figure out how to view your picture. Hey, do you have a FaceBook Page? Rosemary, I certainly hope your dental problems have been resolved so you can "get on" with all of the fun things you have planned. When are you and Hodaya going to get together?

Gilda

Gilda, i think you explained it perfectly the first time. it's not normal to have more output rectally than through the stoma. when you have a stoma, all of your output should go through the stoma and just a little of mucous every once in a while should be expelled from the anus.

the moldable wafer is actually even better for stomas that stick out. it could be not so good for retracted stomas, cuz i've heard of ppl with rectracted stomas, or stomas that don't stick out enough, that after a while from applying the wafer, the molding stuff swelled or something like that and covered the stoma and that caused problems. i never tried the moldable wafer. i think i have one at home from samples i got right after the surgery, but i think it is flat and not convex, so i won't be able to use it. do you like the moldable wafer, Gilda? maybe i should order samples of the convex moldable.

i never look in a mirror when i change my appliance. many stoma nurses recommend on doing that, but i don't feel i need it.

yes i have a facebook page. you can find me there under "Hodaya Leah Cordoba". i would LOVE to see you there Gilda :)) Rosemary has one too. Rosemary and me will hopefully meet on May 15. wish i could meet you too some day Gilda.

Hey Gilda,

One tooth filled now; only the second hurts. So I think it is teeth not the nerve in the back of my neck so back to the dentist tomorrow. I am right now having a can of chocolate frosting for dinner to counteract the thickening of a bit of pectin apple sauce I had earlier. This thickening, thinning issue will drive me coocoo. BUT hopefully will figure out before the trip Apr. 26........so soon.

Hodaya said it all already. It is NOT NORMAL for a person with a stoma to defecate rectally. You gotta have poop going one way or the other. What is your choice? Go back to how you were with a take down of the loop ileo OR get an end ileostomy which will not retract and where the poop will always come out into the bag? I think in general you sound better having the bag but only you can make that decision. But the arrangement you have now is highly not normal.

I can change my bag with or without mirror. I use the stoma face plate that I have to cut the hole in. I have never tried the moldable. I just use the eakin under the plate hole I cut myself and all seems to be well appliance wise. So far never had a leak and it's coming up on 4 years. I tell all my friends I have an ileo and what issues can come up (but hopefully never will). If you are in touch with these people a lot, my feeling is it is safer to let people know what is up in case of an emergency. BUT people you don't see so often, they would not need to know. To me it saved my life (as opposed to dying from all that gut damage from my defendants) so I call it my "life saver". Yours was elective so I understand whole 'nother story for you.

Enjoy your vacation; wish me luck on mine and good luck with your decision.

Hodaya,

I got my Blackberry today and am just learning it. BUT I will be able to call you on it and to email you on it. May 15th late in the day and into the evening will be our time. We now dock at 12:00 noon on the 15th in Haifa and are overnight in Haifa harbor until 8 p.m. May 16th. We are in process of side trip planning and timing, but have earmarked lated the 15th for you. More detail when I get it.

Rosemary

Hodaya,

Yes the skin prep is the "protective film" you are using. My brand is All Care Wipes. But is the same thing. One tooth better. Looking to see if the other one next to it just needs a filling. Hoping it is no the trigeminal neuralgia issue. BUT someone on here gave me info on something to take for that not needing a brain nerve frozen as my dentist mentioned. Lordy. Got my Blackberry yesterday and am scrambling to learn how to use it as I can email and phone internationally from it. HOPING I have all my ducks in a row before take off. I gotta be OK for this trip as getting to Israel is like a survival trip in and of itself all because I can't fly. BUt it is as it is. Rosemary PS Will update you on our side trips Hodaya.

Hi Hodaya,

I got the blackberry cell phone that I can call you and email on when I am on my trip. I will do a test call to you APril 25 when I turn it on for the international plan. I will then email and call you from the ship when we get near Israel for our May 15th visit. I am sooooooo excited. TOTALLY nervous about this trip. Just finished a bunch of legal work and am basically sleeping all day today. I HAVE to get packing tomorrow (Easter).

Tooth issue all quieted down after he filled the obvious cavity. Then the tooth next to it quieted down as the pain in that was just referred pain. Turns out I did not have that brain nerve facial thing after all. God, what a scare I did not need. Was not going to even venture into that nerve brain freeze even if it was. Imagine all the trouble I could get into with that!!!!

I gotta crawl out of all this legal-medical-ploitical muckery I am in around here and focus on packing. I wrote up all my defense to all those silly untrue statements and allegations written about me and my house by the Private Eyes hired by my LTD ins. co. and will mail it off Monday. That was a bunch of work I did not need. Sure hope I stay well as I am and can get off on this trip and have a blast as I deserve it! Will be in touch with you. I have your tel number and need to get myself together tomorrow and get with the packing. Gotta get out for a walk too. Been in all day. Cold and rainy here. I have to believe there is a greater good that is going to come out of all I have been through. There just has to be.

Interesting, had a mucous suctioning of my rectum the other day and do feel a LOT better. BUT interestingly there was very little mucous there. AND I have been able to pass some. How weird is that? Also, the inside of my lower colon did not look all bloody and friable as it did previously when I saw it on the monitor. I did not see any signs of disuse colitis and my colon has not been in use for 3+ years. Interesting huh? It's like my body is trying so hard to regenerate itself.

Rosemary

oh no Rosemary, i won't be able to answer you on the 25th. lol it's second passover and holidays are like sabbath, i dont light fire, touch electriciry, computer, phone etc. if you don't mind, pls do the call test on the 26th..?

so glad to hear you don't need that nerve brain freeze after all!! that's great news. how are you doing flu wise?? mine is better. i did have an allergy test and it showed i have no allergies. the dr thought it was weird, but doesn't know what else to do.. so i don't know.

i believe something very good will come out of all you've been through. maybe you'll even be interviewed on a tv show! let us know about that!

it could be that that little amount of mucous was close to the outlet - to the anus, and when it's so close, even a small amount can make you very uncomfortable, unlike when it's upper in the colon. what do you think? anyway it's great you're able to rid of some on your own. what did the dr say about all those disuse colitis signs being gone compared to previous suction?? was he surprised?

yes, walking does make poop go faster into the bag, but not much of a difference. actually, i did notice once when i lied in one position and then turn to another position, suddenly it made more poop come out. :) but it doesn't always do that lol.

i did hear of some ppl who had a colectomy and still have IBS. me, for instense, lots and lots of foods make me soooo gasy, like diary, peanuts and peanut butter, certain vegies (even when cooked), fresh squized fruits (certain fruits), like fresh squized orange juice, pomegranate juice, strawberry juice and lots of other fruits, beens. but as long as i keep away from those, i hardly have any gas. maybe it's something you're eating? and yes, if i go more than like 7 hrs w/o any food, i start to get gassy. but overall i'm doing ok.

and you'll be ok too, Rosemary!!!!! yes you will!! and i can't wait to see you. there's a chance my friend (the one who's with me on our new forum - she lives in Haifa) will join us and if you want, she can take us places etc. but i just thought we'll see when we get to meet and then decide if we'd rather go somewhere or just hang aroung the ship. what ever YOU decide hon, it's YOUR trip and you're our guest!!

waiting for your call ;))))

so glad flu is gone :) praying you keep doing ok through this trip!! and you will!!! it was great hearing your voice :))