Need to talk(Ostomy advice)

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Jeff D.

Joined
Apr 22, 2006
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Alright guys the past two weeks have been very tough on me. I've been going to the bathroom between 10 and 30 times a day. I never feel like I really ever get anything out fully. Today I had a few solid BM's but they were quite small and since then I've just had some mucus mixed with a little blood. It's getting so aggravating. I can take pain but right now the I have no pain just this annoyance that I constantly feel as if I need to run to the bathroom only to get there and have nothing come out except for the mucus on the toilet paper. I feel like I have something solid inside of me but it just doesn't want to come out.

I can't wait for my appointment on April 19th with my surgeon to talk about a colostomy. I used to be scared and such about the possibilty of an ostomy but honestly I don't care anymore. I just want to feel 100% again and I know I will once I heal from the surgery. I haven't had a Crohn's flare in years, every flare like symptom has been due to my scar tissue.

I just needed to get that off my chest before I went to sleep. Hopefully I can get to sleep as it's been pretty late and today I woke up at 12:30 which was pretty great.

Yesterday, I was having the chills and some hot flashes and stuff. I've woken up in a sweat two nights in a row. Yesterday I felt aweful most of the day. I think I got a bit dehydrated though.

I'm actually typing this from my toilet. I just had at least one if not two small pieces come out so hopefully that helps me get to sleep in a little bit.

Thanks guys for listening to more of my rants.

Jeff
 
Hopefully you do get a good nights sleep Jeff. Sorry to hear you're still having so many problems but hopefully April 19th will be here before you know it!
 
Ditto on the best wishes for a good sleep tonight. Hang in there.
 
Thanks misscris and Kelly for the well wishes. It doesn't seem like it's going to be a good night. I've had a few solid BM's but now I'm getting, ugh I can't think of the word it's like contractions but it's in my rectum. How can a nursing student forget these words...ugh

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So now it's almost 2am and I've been to the bathroom I think 7 times since I the last time I wrote which was a little over an hour ago, maybe an hour and a half. I can't wait until I'm done my classes so I can take a few glasses of miralax to get rid of everything so maybe I can start fresh with an empty bowel on Tuesday.
 
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Good luck Jeff... Im sorry to hear you are going thru a really rough time at the moment... April 19th couldn't come quicker for you. You poor guy how horrible to be going to the toilet that much. I feel for you Jeff and wish and hope that you start to feel better soon.
 
Thanks Tan, I don't even konw how many times I've gone to the bathroom tonight. It's been way too many. I'm so tired yet my body won't give me a break and I need to be up at 7 to go to class. I can't skip tomorrow either because I have a quiz in my 8am class and a test that I have to take inbetween classes for my online class.

I'm really hoping my doctor says to not worry about classes and that I need to have the surgery done then. I'm sick of waiting...
 
oh Jeff :(

you must be absolutely exhausted! it does sound like you're flaring just now, what with the urges/mucus and the sweats... i hope the next couple of weeks go quickly for you, and the appointment will bring some quick decisions and good results for you. i don't suppose you can bring the appointment forward at all?
 
Thank Ding. I haven't slept more than a few minutes and I need to be up in about an hour or so now. I know I'm not flaring even with the mucus and such it's just caused by the amount of backup I get. My rectum is about the size of a pencil to allow things to pass through and sometimes I get really backed up. After I get backed up I get a little blood and mucus and I get really dehydrated sometimes which causes the sweat and such. As soon as I get my colostomy I should be fine and I can't wait now...ugh.
 
i also can't wait for you to have the surgery now... i know it's been a rocky road thinking about the prospect of it, but when you finally get to the stage where surgery is the light on the horizon that you so badly need. a lot of the previous worries fade into insignificance...

Jeff we'll be there with you, and just shout out if you need any questions answering about stoma care etc...
 
Jeff, you have been through alot in this last year. As we all know we need sleep, it is so crucial to healing. I know you were a bit nervous of your surgery, but enough is enough. I know from alot that I have learned on here, it is great if you can control your pain and doesnt interfere with your lifestyle but when it takes over, time to get surgery. Your life will change dramatically and you will be a happier person, others around you will feel more comfortable too.

I know the best is yet to come, hang in there, just a little longer. Hope you get some sleep soon. Big hugs!!!!
 
Thanks Sue and Pen. I really just can't wait to get this done. I wish there was a way that I could get it done today instead of waiting. I don't want to be like this for the next two months. Well, I've got to get ready in a few to head off to school and take a quiz and a test and then be able to study for a really hard test tomorrow.
 
Good luck Jeff! I hope you get the surgery soon. Try not to be too hard on yourself if work and school end up just not being possible right now. Your health is the most important thing.
 
Hiya Bud,

I am truly sorry that you are going through this, hopefully the appointment will come soon, and you will get some relief. Hang in there bud, remember to breath and try to relax so that your stress doesnt make it worse. I hope your day is pain and D free!
 
You mean spasms? Ow. I hope you find relief soon. Take your temp. You may have a fever. Go to the ER if you do, you could have an infection.

Take care. I am actually a little excited to see how much better you feel after surgery. I wish you the best.
 
Aw Jeff poor you!

I feel for you, especially the sleep deprivation, you must be exhausted
Wishing you good luck and everything gets sorted soon, hopefully you wont have to put up with this for much longer, is there no way you can rush appt thro?
lotsa luv
Joan xxx
 
Hope you start feeling better soon Jeff...and as others have said, try and get your appointment rushed forward. Or, go to the ER kicking and screaming...that might work too! Good luck....keep us posted!
 
Thanks guys. I'm a little tempted to go to the ER except that the drive is about an hour and a half to the guys I trust at Vandy. I don't trust the doctors where I live. I've really considering taking miralax treatment to make sure I'm nice and empty and then go to the ER or something.

Yes, spasm is the word I was looking for. Whenever I go from having D to solid BM's and having to push I get spasms in my anal sphincter which keeps making thing I need to go to the bathroom even when I don't.

It's crazy that April 19 is the rush for me. My surgeon only sees patients on Mondays and the rest of the time he is doing surgery.

I've at least made it through today and I got a 76 on my sociology exam, pretty good considering I slept 10 to 20 minutes last night and was attempting to study yesterday as that's when I found out about the test.

Thanks everyone for all of the support. You guys are the best. I'm just getting excited to get this surgery and feel better...
 
Wow Jeff, your symptoms are terrible. I read your post a few times, it made me think of my symptoms too. Except I have diarrhea. I'm not sure which is worse! I have had the night sweats too sometimes and know how horrible they are.

I'm scheduled for a Protocolectomy on April 15th, so I know the feeling of wanting that diseased organ out. Mine is mostly forced by dysplasia, without that, I'm not sure I could pull the trigger and remove the colon just for the other symptoms.

But, I do know the feeling of hitting rock bottom medically, and just wanting to get better somehow. I hope things work out for you!
 
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I hope you feel better soon Jeff! Now that you have taken your test I hope you are able to relax more. I hope April 19th is here before you know it.
 
I feel bad that you are going through this. If you are thinking the emergency room can help you feel a bit better till your appointment, then maybe you should consider going. I hope that everything works out well for you and that you can feel well again soon.
 
...and here I thought I was the only one who did homework/studying in the washroom!! I hope you feel better and congratulations on your test! You're obviously very bright if that is the grade you can get when you're not sleeping and feeling the way you do. I hope you feel better soon and it is good to know that you're a nursing student... I have met several horrible nurses with no empathy (did my practicum in the E.R).. sounds like you will be a good nurse!

Feel better :)
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JAILBROKEN
 
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Jeff, I'm so sorry to see you going through this...
Is there anyway you can get the surgery moved up?

I hate to see you suffering like this...
maybe if you go to the ER.

I'll be praying for you.

Healing hugs~Nancy
 
Thanks guys for all of the support. Going to the ER right not won't do much good as I'm not really a priority. I'm not having any pain or anything so it won't help too much and I would only be taking the bed in the ER of someone who really needs it. When I go see my surgeon on the 19th I'm going to see if he could do the surgery ASAP.

Keona: Yeah studying on the toilet is so normal for me. I also feel I would make a good nurse since I know what it's like to be on the other side. What are you studying?

Thanks guys for everything, now back to sleep for me.
 
aw jeff im so sorry. i was hoping that youd have a little longer before the ostomy became imminent, i hate that it is all because of the stricture. and the rest of your colon is in decent shape?? i just hate that ,you dont deserve that.

ahh well im glad to hear that you are finding some comfort in the prospect of the ostomy now. i remember being there very well.
all the sudden its so simple and clear and you wonder why the hell you were so scared before. thats how i felt anways, very strange to go from being petrified to anticipation. in those final weeks i could not WAIT to get this thing done, i was just so over everything, just like you.
haha i even typed on here from the toilet too :) lol!

ah well, as always i am here if you need anything i will do my best to help you in any way. pm me or fb me any time k?

i hope either way it goes, you get some freakin relief soon. i know youre strong enough to get thru w/e it takes.

am def thinking of you, xox
 
Hey Jeff,
Hopefully you are sleeping right now and find some relief. I have a minor in sociology and I am majoring in social work. April 8th is my last class (WHOO-HOO), and then I have one more elective and I'm done. I have 6 papers and a presentation left to do but the prof's were really good in giving me extensions. I hope to work in I.C.U when I finish (did my 4th year practicum there). How much longer do you have? What area do you want to get into?
I can really relate to you going from the bathroom directly to class. At my last presentation (I did the powerpoint for the group) I had to run to the washroom at school and they had to wait for me. They were laughing (the class) and wondering what took me so long. In fact, so late that the next group presenting had to take our slot. I also find I go out of my way to make people laugh - don't want to seem like a downer all the time at school with not feeling well. Difficult to do! I try to hide everything as much as possible but do at times mention I don't feel so great. (That way if anyone says "why didn't you say something?" I can say I sort of did.) Anyhow, kudos to you for going through the motions and getting to school the way you're feeling. The student experience is difficult to begin with without the added extra pressures!
Here is a medical joke for you - maybe make you smile... what is the difference between an oral and rectal thermometer?
.........
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Vaporizers
 
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okay, I hope I dont get in trouble for posting this but before I do imagine doing rounds in the ICU with the intensivists and fellows and nurses and dietician, etc.. youre the new person and while they are going over the individual charts, the intensivist asks you the difference between the two - real serious like. I think I said something about where they go (I was so nervous) and he told me. "the taste"... and walked away. sort of felt like i was on the show "punked"..
anyhow.... good luck at school!
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Michigan Marijuana Dispensary
 
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Thanks guys for all the support.

Kelly:Yeah I feel mentally how you did before you ahd the surgery. I'm just ready for it to be over haha.

Keona: I could never be a sociologist. I'm taking a sociology course and maybe it's because it's online but it's kicking my butt.haha I'm similar to you in that I try and hide how I feel but I think my teacher yesterday caught on as I was cringing alot and she looked at me funny.

Here's a joke for you: "I think this is an oral thermometer, we'll use it anyway"

I think now I'm completely out of stool so I didn't have hardly a problem in class today but it was only a test that took 30 minutes. I'm pretty proud because I got a 73 on a test I was hardly able to study for. If I was able to study I wonder what I would have made.
 
Does your school have something called "student development?" It would be where the counsellors are. My university has one and for anyone who has a 'disability' they will make arrangements with your prof for you. For example, if you have been scheduled to write 2 exams in a 24 hour period they will make sure that it is spaced out a little better or if you want to write an exam in a small room instead of a gymnasium of 700 people they will acommodate you. They do this to level the playing field a little - so-to-speak. I was thinking about your comment my first post... if you get in the 70's when you are sick, imagine what grades you would be getting if you weren't. I didn't want to say anything in case that made you feel worse. I don't know if your school has this but might be worth making a few inquiries.
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Chevrolet 150 Specifications
 
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Oh no, you didn't make me feel worse. I'm not sure if they have student development as it's a community college. Yeah, that would be awesome if I could figure something out to help me out. I really can't wait to see what happens when I get my stoma and what I will be able to do when I don't constantly feel like I have to go to the bathroom. There are so many plus's for me with this as I will be able to ride bikes again since I don't have to worry about anymore scar tissue and I will be able to sing more powerfully since I won't have to worry about going to the bathroom while singing.haha

I think my biggest problem with school is that I'm lazy but I know most of that is due to my scarring and feeling like I have to go. Anyways, I'm just going on and on now, I'm starting to get sleepy now so I'm a bit delirious.haha It's kind of weird because I feel drugged up and I'm not.haha
 
The community colleges here have "Centres for student development".. again, I don't know about how things work in the states. Maybe someone else here knows. Is there a directory of services on your school's website page? It would be under there...I just don't know what it would be called. I would imagine there would be something as places are trying to make things more inclusive.

Funny, just wrote on my facebook status the other day that I am feeling dilirious... lack of sleep does that to me!
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EXTREME VAPORIZERS
 
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Jeff, I used to liken these symptoms to dry heaves but from my butt. It sucks I know. I figured that before my ostomy surgery I spent about an average of 6 hours on the toilet a day. I just kept hoping something would come out and I'd feel better. I'm so sorry you have to go through this. I really am. Can your doc give you prednisone to help calm your system? I really hope you feel better soon. Take good care, Sharon
 
Pred doesn't do anything for me because it's all scar tissue. I need to really up my doses of miralax or something so I don't get backed up again. Things have finally simmered down today because I don't have very much in my system. I'm not having constant mucus which is great but I still have a bit when I go. I can't wait to get the surgery so I can start to feel better.

Thanks Keona, I'll check and see if I can get in touch with them.

Ya'll are awesome!
 
Jeff,

If you feel you cannot wait, then seek immediate advice from a your GI doctor. I went 5 years undiagnosed and it was too late to manage it without surgery. They ended up taking 2 feet out of me and stayed in the hospital 11 days, 6 of that in the ICU to fight blood poisoning. Before the hospital, I was self medicating with a harmful mix of epsom salts and very potent pain pills. Epsom salts to clean out my GI, the pain pills to deaden the hurting, and only ate Campbell's Chicken Noodle Soup for nine months because thats all my body could handle and take in.
 
Thanks tairby, I can wait. I just don't want to wait anymore. Once my mind is made up on something it's hard for me to wait any longer and I've made up my mind on this.

I'm sorry you seem to have been through a lot. Welcome to the forum. Can you write your story in the your story section.

Thanks for the support,

Jeff
 
So a question popped into my head. What do I do if I have to empty my bag. Would I need to take of the whole appliance to empty it or is there an opening or something? Just trying to figure out if I have to reapply the valve or anything to my skin after emptying. Isn't there a paste you use that seals the appliance, would I have to keep it in my pocket throughout the day in case I have to empty the bag.

Also, what do you do if you have to empty it in a public place. Do you have to clean the bag between emptyings?

Thanks,

Jeff
 
hey jeff, no for sure you dont have to change the appy every time you need to empty, theres like a spout at the bottom with a sealed clip that u can open when you need to empty. some pouches are closed bottom though, that some people prefer to just change the POUCH every time instead of emptying them. more like diposable pouches you know?
but in no case do you have to change the whole appy in order to empty.

it IS wise to carry around a spare change of supplies with you, like throw it in your backpack or w/e you know? just in case. i carry around a one piece pouch cause that is easy to just slap on in a pinch and will last you till you can get home and do it normally. i find it a lot easier to carry around just the slim pouch. it could prob fit in your pocket lol.

and omg ALWAYS carry an extra clip. youd be suprised how often those suckers fall in the toilet lol!
 
I use the bags with the velco closing so don't need to carry around a clip!! I also carry around a spare bag, flange (just in case), and a garbage bag in case I need to throw the used bag out. In most cases, I just open the bottom of the bag, empty it, clean the opening, and close it back up. Very simple!! I only change my flange once a week. You'll get used to it right quick Jeff! No worries!!
 
P.S. When I 'm at home and don't want to change the whole bag, I just squirt some water into it to clean it. Works like a charm.
 
Thanks you guys, I figured that would be the case. Being a guy, I don't want to be carrying around a bag all the time with my supplies.haha I guess I'll adjust my shorts and pants to have extra large pockets.haha

Thanks
 
i would worry TOO much about making adjustments in pants and such lol, so far i have never even needed to use my backup plan.
maybe just leave some in your car, backpack, stuff like that. i sure dont have my purse on me all the time, but i guess at first i was more intent on having one all the time.....maybe it is jsut soemkthing you get accostomed to your stomy and its behaviors.

i promise it becomes much easier over time, you dont feel that fear of having to constantly "be prepared" anymore, you know?you will get comfortable with it quickly =]
 
haha, thanks Kelly. Maybe I'll bring a backpack with me for the first little bit. I think I'm just so anxious to get this colostomy that I'm just thinking of too many things.haha

Thanks for the help guys
 
With a colostomy what foods would I be restricted of eating? Also, how long until you think I could sing after the procedure?
 
I was singing in the hospital....they don't do anything with your vocal cords :)

And I can eat whatever I want...and drink alcohol again! I have absolutely no restrictions and have had no problems at all. Should be the same for you unless your Doctor has something else to say about it. I actually made my bf fetch me a burger from Wendy's while I was still in the hospital. OMG it was sooooo good! lol
 
Oh wow! I was worried that due to the placement on the stomach that I wouldn't be able to take deep enough breaths to sing. I'm glad that's not the case.

I was guessing that was the case but I was bored and I looked up celebrities with stomas and I found the colostomy diet so I was just trying to seperate fact from fiction.

Thanks Nyx
 
Man bags can be quite fashionable! I got my husband a cool one to carry his keys and wallet when he goes to karate class. You could find a cool one for your backup ostomy supplies. Way less dorky than a fanny pack!

I had an ileostomy for a year. It was GREAT! I only had 1 blowout in a year - too much coffee!!
 
Haha, I didn't think of the famous "man bag". That would cost money though so I think I'll just use a backpack for a little while. I don't think I could ever pull off the fanny pack, even the name, fanny, can hardly keep me serious.haha

A blowout can't be good. I'll have to remember not to drink too much coke.haha
 
The coke isn't the problem, it's what you put in it that's the problem...lol I've only had D once since getting the bag, and that wasn't such a good time!! lol I've never seen it fill up so fast! I know, tmi....Pepto Bismol is your friend...that's all I'm sayin'...
 
Haha, nothing is too much information to me.haha That's definitely good info to know. It just means I'll have to stay near a bathroom if I get D. I've never used Pepto. Maybe they should also add that it helps ostomy patients. Try to get that added to their song.haha
 
The one fortunate thing that I've found is that when I have D now, I don't really know that I'm having it till my bag is full...I don't get that upset tummy feeling. It was actually a surprise! I haven't felt naseous once since getting the bag! The other good thing is that it only lasted less than an hour, and it was quite managable. I only changed my bag twice during the entire episode.
 
Okay, so after watching Joe's thread I'm worried about the catheter. I'm honestly not sure how I will be able to deal with that if they do it before I'm high or completely knocked out. When they had to put a PIC line in me a few years back I felt it going through my veins and into my chest so I really don't want that experience again. Thanks

Jeff
 
I had the stomach flu once when I had my bag. My dad had the flu at the same time. He was running to the bathroom every ten minutes. I just kept going and going into my bag and only had to empty every couple hours. Score one for the ostomy!

PS I had a pic line once too and it was NOT fun getting that sucker put in. But demerol delivered thru a pic line? Pure bliss.
 
I was going to make another thread but I decided against it. I like this thread more than enough. Anyways, I'm having surgery on May 25. My surgery is going to be a loop ileostomy and my doc is going to do it laparoscopically. They said recovery time should be 3-5 days in hospital, in 2 weeks I'll be able to do normal things again and in a month I'll be completely good.

I found out some strange things today, apparently I have moderate to severe Crohn's throughout my entire colon. It's weird because I was told I had hardly enough inflammation to be concerned about and that could be due to the scarring so that's not good. My surgeon wants to take out my entire colon but with my GI's research he agreed that it's probably good to just wait because he can always go back and take the whole thing out if need be.

Although it's a month away I've already got my dot drawn and I need to keep my fake Reni, that's going to be the name of my stoma :) , shaved and redotted for the month. I'm getting excited and I'm ready for next month to be over with.haha

Thanks for all the help and if you guys have more tips for me, keep em coming because I need all the tips I can get.

Jeff
 
Congrats on the surgery date, Jeff. I hope the next month goes by really quickly with not too much anxiety.

Good luck! -Amy
 
Thanks, I really think it's going to go by quick as I'm going to be very busy. I can't wait for 2 weeks after surgery where they say I'll be able to move around like I am right now. There is a priest I want to meet who is going to be an hour and a half away from me and I can actually see him if I feel good. Then I'll hopefully be able to go to the beach with one of my old friends who I haven't seen in almost 9 years.
 
Congrats on setting the date Jeff! Just don't tax yourself too much after getting out of the hospital! Try and take it easy, as your guts will be all moved around and need time to settle into their new position.

Hope it all goes well for you!! I'll be thinking of you..
 
Thanks Nyx, okay a few ostomy bag questions...

Do you guys use the velcro, button, or clip bags or a combination?

After you go to the bathroom the ostomy nurse seemed to make it that all I do is clean the tip of the bag, fold it up, away I go. What do ya'll think?
 
I use the velcro ones. I've also tried the clip ones, but didn't like them as well.

Usually when I go to the bathroom, depending on how full the bag is, I'll either just open the bag at the bottom, empty it, clean the opening, and then re-close it or if it's reasonably full, I'll just put on a new bag and clean out the old one. If you have a one piece bag, you just empty it and clean the opening till you need to change the entire appliance. Depends on what you're using :)
 
Thanks Nyx. I'm trying to gain personal experience from others with ostomies on what they like. I think due to my soon to be active lifestyle, I'd like to have a 2 piece because I could turn it how I need it to be comfortable. I'm not sure how I'd deal with a one piece.
 
You'll most likely get a one piece while you're in the hospital. That's what they gave me anyway (it's less work for them, understandably). So you'll get to try it out while you're there. Personally, I like the versatility of the the two piece, with the different sizes and types of bags that you can use. Just make sure you get your stoma nurse to give you freebies to try!! And get the 800 numbers for the ostomy supply companies, they'll send you freebies too....freebies are good!! lol
 
Thanks, yeah I have the numbers for all the free stuff.haha I think they are going to be giving me a 2 piece in the hospital but I can't be sure. The ostomy nurse sounded like a 2 piece is what she would be supplying me with.
 
re your question about being able to sing after the surgery, i was going to say that depends on whether you could sing before... lol

ok.. first of all, big congrats at finally getting a date fixed, for your new start in life, Jeff. i'm delighted it's not too far ahead, and that you now know exactly what they're doing.

regarding the appliance.. just to go empty it is a very quick and simple job, basically what your stoma nurse has said.. just open the drainable end, let it empty into the toilet, wipe the end clean, and refold & seal - & you're done.

if you're changing it, it takes a little longer... if you're using a 2 piece and just changing the bag, then it's pretty simple.. just unclick, or unstick (depending on design) the bag, and reapply the new one. changing the whole thing does take a little longer, as you have to be sure the skin is clean and dry... but it's amazing how quickly you get used to doing all this.

my tips - keep an appliance with you at all times, you can fold one up, precut, put it inside one of the disposal bags, & slip it into your pocket or somewhere. not only will you have it there just in case, the reassurance that it's there is important too... also, take time out to notice how long after eating it takes for your bag to fill up - this is really useful when you're guaging a journey on public transport, for instance..

Jeff you're going to be fine - but please keep posting any worries you do have, and between us i'm sure we can put your mind at ease :)
 
Thanks Sue for all of the tips. I sure need em.haha

I'll definitely be posting all my questions and insecurities as I get closer to the surgery.
 
Once you find the appliance that works for you, you'll probably find you are able to be more active than before! I had a bag for a year and felt so darn good after being sick for so long, I did tons of stuff!

If I remember correctly, the ostomy supply companies can send you free samples for you to try until you find the right match for you.
 
Hey Jeff, congratulations on your surgery, I'm going through the same thing as well. On May 6th I have my surgery. However, mine is the jpouch surgery with a temporary loop ileostomy. Good luck, this will be an experience for both of us.

Joey
 
Thanks guys, sickranchero, I'll be saying prayers for you on your surgery date. We're practically surgery buddies.haha We'll have to compare scars.
 
yay glad to hear its fixed!

if you want go back and read the beginning of my surgery thread? it has some AWESOME advice from everyone, esp from pple like danman, ding, mark, etc. im sure i was asking many of the same questions that are on your mind now. im sure there is a load of answers in there.
hope it helps!
 
so sorry jeff, but somehow i have missed this thread.
my pouch has a velcro closure. thats ok ok i dont "stick " it right and the velcro gets caught on my pubic hair, ouch. thats not pleasant when your driving and cant do anything about it!!!


i was in your frame of mind before i had my "fred" i didnt care what they did to me as long as they took away the pain. after recover i have never felt better. i still have flares, but these flares are bearable and not so disabling.
wishing you good wishes and a speedy recovery.
 
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merrywidow said:
so sorry jeff, but somehow i have missed this thread.
my pouch has a velcro closure. thats ok ok i dont "stick " it right and the velcro gets caught on my pubic hair, ouch. thats not pleasant when your driving and cant do anything about it!!!


i was in your frame of mind before i had my "fred" i didnt care what they did to me as long as they took away the pain. after recover i have never felt better. i still have flares, but these flares are bearable and not so disabling.
wishing you good wishes and a speedy recovery.
Click to expand...

OMG about the pubic hair!! I have the velcro closure too, but have never had that problem!!!! Thanks for the heads up Sharon! *gotta remember to buy razors * lol
 
So I've been reading Kelly's Surgery Time thread and she didn't have to prep, well I don't have to prep either, but has anyone done a little prep on their own anyways? I'm thinking about taking some miralax for the days leading up to the surgery so that I don't have to pass stool after surgery. What do you guys think? I'm going to call my ostomy nurse and ask her in a few days but I just want to hear ya'll descriptions. Thanks

Thanks MW for your thoughts on the bags. I'll have to see I guess, I wouldn't have thought about the velcro on the pubes...that can't feel good.

Thanks guys
 
i didnt poo after my surgery at ALL. and i was pooing right up UNTIL i was put under, seriously, just as they were ready for me to be rolled into the OR i crapped myself.
i wondered the same, whether id have some left in there and it would have to come out later, but nothing ever did, only mucous.

but it is def worth an ask. be careful not to dehydrate yourself if you do decide to use a laxative, it makes it tough for them to stick you for the iv :(

sometimes i wonder if they flush you out in the surgery you know? like a reverse enema. after they snip but before they seal off the TOP of your colon (the length from your ileum to your rectum) if they flush DOWNwards with some saline or whatever to cleanse the colon out.
it seems entirely possible to me but not too sure.
 
re prep, i didn't - but then again my ileo surgery was an emergency, following 2 other operations... so i think i was completely empty anyway.... it might be an idea to reduce any fibre intake in the days before, and restrict it completely for the last 48 hours.. but yeah, talking to the stoma nurse is a good idea.

re pubes (lol), thank goodness i've never had that problem, but sometimes the drainable end corner sticks into my groin, especially if i wear tight jeans, and it's a bit painful... and difficult to adjust if i'm in public and don't want to just plunge my hand down my jeans! lol!
 
dingbat said:
re pubes (lol), thank goodness i've never had that problem, but sometimes the drainable end corner sticks into my groin, especially if i wear tight jeans, and it's a bit painful... and difficult to adjust if i'm in public and don't want to just plunge my hand down my jeans! lol!
Click to expand...

Lol...I've had to do that too! The corner hurts!!

Re prep...I didn't do any prep either, since my surgery was an emergency too. They did it for me while I was in there (they told me afterwards). If you keep your rectum, you'll always have to 'go' since the mucous still needs a way out, but it's not a big deal. I probably only have to do that about once every week or two. The first time it happened I was surprised! Cuz it feels like you have to go (just like in the good old days...lol)...but it didn't take nearly as much effort or as long...lol I'll be glad when I don't have to do that any more either :)
 
I also wanted to comment on the catheter comment in Joe's thread...I wouldn't worry about it too much. They put mine in the same day of my surgery right after I woke up. I was on so much pain medication that I didn't even feel it. I'm sure it'll be the same for you. Gotta say though that I loved not having to go to the bathroom for almost an entire week! It was weird....
 
Thanks Kelly, Sue, and Cindy thanks for the help. I'm not worried about pooping mucus, I'm worried about having to push out stool but I guess they'll take care of that.haha

I found out I either will not need a catheter or they will put one in during surgery and take it out during surgery. They will only put it back in if I have a problem going to the bathroom after surgery due to the medications.

Also, when do you think I can start wearing one of those ostomy belts? Probably a few weeks after surgery, right? I had a question about the belts, do they restrict the bag in any way? Like, do they restrict the bag from getting bigger or something? I don't really know what I'm asking but I'm really hoping to get back to my active lifestyle I used to have.

Thanks guys
 
I don't wear a belt cuz I don't need the extra support. I don't think the belt would restrict you in any way anyway...the belt just attaches to the outside of the ring that attaches to the flange anyway, so the bag itself is not 'cut off' (in other words, it doesn't go across the bag or your stoma).

I have a pouch cover that I use to keep things in place when I'm being active (swimming etc....and for sleeping too) and it doesn't get in the way at all. I actually find it a bit of a comfort knowing that things aren't flopping all over the place...lol
 
Thanks, I can't remember the site but it's like a sports belt. I think it comes in different colors and is a little larger on the ostomy side. I need to find that website again. It looks like a belt but is more of a cover.
 
jeff theres some different types of belts....theres the ones that connect just to the flange, like nyx said. if you look at my ileo album on my fb? one of the pics with my pouch on you can see the belt. i do really like it a lot now, i can let that sucker get totally full if i want to lol.
at first after surgery i didnt wear a belt, but then was told to once the wounds and things started being a problem, so that the pouch wasnt pulling on it.

NOW there are also like, support belts (maybe these are like the links nyx gave you, i didnt look at them) that i think DO or at least partly do cover over your stoma. i think some people wear a certain support belt right after surgery to prevent hernias and prolaspse and such.

idk not too sure how any of them work though, it may be worth some research or talk to the stoma nurse and stuff. i think there is some conversation about it in my surg thread too....

ohh yeah, good point nyx! the belt helps a lot for sleeping too, when you sleep on your side and if the bag is a bit heavy it will be pulling down, but with the belt even if the bag is weighed down, the base stays put.
 
oh and then theres also belts that are not for support but more for slimming. like a tube top sorta, kind flattens things out, just for asthetics and comfort tho
 
Thanks Cindy and Kelly.

Cindy, those stealthbelts were what I was thinking of. Do you like them? How full can I let a bag get in one of those?

Kelly, I'll check out you fb album because I'm all stalkery like that.haha Thanks for the help

Thanks for the advice ya'll about sleeping and wearing a belt. I didn't think about that.
 
i don't use a belt.. never have done - i guess this is for two personal reasons: i don't like anything tight round my tummy, and also i have always tried to surround my stoma care with at least fuss and difference to my life as i can...

however, i've recently let my stoma nurse talk me into getting a couple of those tubular elasticated thingies that Kello mentions above, it's a little like a straight skirt, or boob tube, and comes in handy for wearing under say a swimming costume or a slinky dress or something, if you want to smooth lines of the appliance out of sight..


lol i just read that back.. Jeff, i wasn't implying that you wear slinky dresses or anything :D
 
The stealthbelt is ok, but like I said, the bag has to be put on sideways so that it hangs around your side rather than down your thigh. I find that I can't let it fill too much as it doesn't push out to the side and just gets stuck (the idea is to have the poop in the bottom of the bag, this is where gravity is your friend...lol). Not sure I explained this very well...but, it's great for sleeping (I rarely have any activity overnight) and for activities that aren't going take hours and hours. The one good thing about the belt is that it does have a zipper so you can access your bag without taking the whole belt off. So, if you need to empty or change the bag you can.
 
Hey Sue, I never thought for a minute that you were implying that I wore skirts.haha

Cindy, thanks for telling me about those. I was thinking about a stealth belt for playing sports or going swimming or active stuff in general.

I never thought there would have been so much to think about. Wow, that's just crazy.haha
 
Hi Jeff. I have had my bag for a little over a week, and I have had similar questions to yours, so I am glad that you have this thread. I just ordered some belts, so I will let you know how they work for me when they come in.

One word of advice for after surgery. Don't let yourself get dehydrated or you will end up back in the hospital. I thought I was getting enough water, but i guess not and this happened to me. Other than that, I have had no problems since my surgery on April 13. My pre-surgery pain is gone.

The most surprising thing to me was that there was still mucus and poo coming out of my bottom after surgery. No one told me that would happen, so I was pretty shocked. I was like, how can anything be coming out? It's not hooked up to anything any more! I think your idea to get as cleaned out as possible before surgery is a good one based on my experience.

Best of luck to you. I'll try to keep you posted on how things are going for me as this experience is pretty new for both of us and we are kind of going through it together.
 
Thanks Jer's Girls. I'm sorry you had to have this procedure. I'll definitely make sure I drink enough water. One thing that may help you is to get the propel powders and pour them into your bottled water. It helps me drink much more than I can without it.

I'll be praying for you my friend. At least I know about the mucus and stuff coming out. Did you have a loop ilieostomy done? How are you able to move around right now?

Best of luck my friend, thanks for keeping me posted
 
I did have a loop ilieostomy. I am doing really well now, although I am pretty worn out feeling still. I feel 10,000 times better than I did before surgery. In fact, the day of surgery, I felt better than I had before the surgery, which I think is pretty major.

Also, just wanted to let you know that the actual surgery was a total breeze. The pain from the surgery was nothing compared to what I was going through before. Most of my pain actually came from the cramping left over from having poo left in my system.

There is no smell from the bag, and hardly any weird sounds so I can totally see this being something I can learn to live with pretty easily.

The stoma itself freaks me out a little bit, but I know I will get used to it in time. I have had some ups and downs emotionally, but I have a good support system so that really helps. I'm not going to lie, I have had a few freak outs thinking about the reality of all of this, but as far as pain goes, it was so totally worth it.

I will try to write to you as often as I can and answer any questions that you have since I am going through this so close to when you do. I promise to be your friend throughout this important life changing time for you.

By the way, when do you have your surgery again?
 
Thanks Jer's Girl you're awesome. My surgery date is May 25th. The weird part for me is that I have no pain, or at least I don't think I have any pain. I'm not sure anymore. It's kind of weird because ever since they put the mark on my stomach where the stoma will be I've felt a pain around that area. I don't know if it's because I'm more self-conscious or not though. Thanks for the support. I'm praying for you.

I'm glad the pain doesn't seem too bad. I know I haven't had teh surgery yet but if you want to talk about anything that may freak you out I'm always hear to talk.

Thanks for the advice and answers
 
Hey Jer's Girl! I'm glad your surgery went well and that you're feeling 10,000 times better! That's always a good thing :) I was surprised about the still functioning anus thing too! Even 4 months after my surgery I still have mucous coming out about once a week or so. It's not a big deal, and much better than what I had to go through before! And the stoma does take a while to get used to seeing....it's this weird pooping alien on the side of your stomach! Mine looks like a little brain...lol
 
I don't think I've asked this before but did any of you guys have leakage prior to surgery if so how was it afterwords. I would love to finally be able to stop shoving a tissue inbetween my butt cheeks. I'm used to it now after having done it for almost 7 years but it aggravates my butt a lot.
 
When you need to pass the mucous and leftover poop it just feels like you have to go...no leakage, feels like a normal bm.
 
I used to hate that too....I'd have the tissue and a pantyliner...ick
 
jers girl---with a loop ileo poo and stuff can sometimes still trickle down you know? your intestines are still connected up all together, but a bit is just folded over and cut a slit in it, make sense? so MOST of the poo will just take the path of least resistance and come out the slit in your stoma, into your pouch. but ive heard that a little bit here and there will by pass thru the loop of your stoma and make it down to your bum.

though if it settles down, then i would think the poo and stuff was prob just what was still in your colon from before the surgery.


jeff-- ehhhh im not gonna lie, i still shove a gauze in my butt and pantyliner =/
sometimes my butt is still just leaky of mucous, and sometimes it is totally dry. and when i feel the warning cramp that a mucous poo is coming, i still have less that 30 seconds, i dont have control still. but it happens FAR less than when i poo'd that way. and it is easier to tell what it means. no more guessing. AND if i do "crap" my pants, it is a LOT easier to clean up than when i was literally crapping my pants. the volume is much less and overall easier to deal with.

i hope thats not the case for you though, i think many off the ostomy peeps leaky problems resolved with surgery. i am just the oddball :D
 

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