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Will I ever feel normal again

annawato

annawato

Moderator
Staff member
My stitches came out by themselves however I now have a 'crater' around my stoma. Not too painful and not getting bigger so I'm assuming it will heal in time. It bleeds a bit but I think all new stomas bleed around the edges a bit. Has anyone else had this happen and do you think its ok to leave it and wait and see what happens?
 
Susan2

Susan2

As long as it looks clean, it should be okay. If there is any sign of infection, then do something about it. You might find that it bleeds a little around the edges of your stoma from time to time even when it is fully healed. Mine does, if I rub a bit hard when washing it.
 
annawato

annawato

Moderator
Staff member
It sometimes looks a bit pus'sy but could be just mucus. Although not sure where that would be coming from - maybe a few drops of betadine (with clenched teeth) will do the trick......
 
maimmie

maimmie

I'm about to try eating fish and chips for the first time since surgery. Besides the fact that fish makes output smell very bad do I have any reason to be cautious or worried? I'm drinking some cranberry juice right now because I believe I read on here that helps with smell.
 
KazT17

KazT17

Haven't read this thread properly but just thought I'd mention the coloplast brava lubricating deodorant. Has anyone tried this? I think it's fab for reducing the smell. It comes in sachets or a large bottle. Sachets are great for sticking in your handbag. Easy to use too xxx
 
Hobbes650

Hobbes650

KazT17 said:
Haven't read this thread properly but just thought I'd mention the coloplast brava lubricating deodorant. Has anyone tried this? I think it's fab for reducing the smell. It comes in sachets or a large bottle. Sachets are great for sticking in your handbag. Easy to use too xxx
Click to expand...

The other one I know of is called M9 and it's made by Hollister. Just put a few drops into the bag. It works very well and the tube that it comes in is very small, so easy to take with you.

The cranberry juice idea probably came from me. There are probably some things it doesn't do work so well with, but it seemed to work pretty good when I tired it. The M9 is cheap enough, and easy to carry with you so you might find that more convenient.
 
maimmie

maimmie

Ok help! I'm having a ton of complete liquid out put. Like water. I keep getting up and emptying my bag and its filling back up with fluid pretty fast. What the heck is going on?
 
Terriernut

Terriernut

Moderator
Did you have the fish and chips? I will say whenever I eat anything with vinegar that is what happens to me.

If you have powerade or gatorade at hand drink some of that. Also, now would be a good time to hit the immodium. Sounds like you are definetely experiencing a very unhappy small bowel.

If you keep up this type of output for too long, get yourself to Dr or hospital for fluids Amy.
 
maimmie

maimmie

I did eat the fish and chips but no vinegar. It's 3:20am and this started when I went to bed about 9. My output is usually pretty thick and gooey but this is basically light brown water. Could it just be from the fish and chips? I'm drinking gatoraid and took an imodium when it started at 9 and another one just a few minutes ago. How long before I should go to a hospital?
 
Susan2

Susan2

See if the second Immodium helps. As long as you can take in liquid at the other end, I wouldn't get too panicky. My personal rule is to go to hospital as an emergency if I have had running diarrhoea and vomitting for 12 hours.

You might be having a reaction to the grease in the f&c.
 
Terriernut

Terriernut

Moderator
If two immodiums dont do it, try 2 more. If you feel lightheaded, dizzy, or 'out of it' then get to the hospital. But as long as you are keeping hydrated, we hope that wont happen.

Do you have a banana there? That would help as well, for potassium and to slow it down.

I do think it was the fish and chips. Clearly your intestines dont like them! We all have different things that just set our bowels off, and you've discovered one of yours.

Amy, I have to say, sometimes these things just happen as well, and there isnt any one thing that sets it off. We all go through it unfortunately.
 
maimmie

maimmie

My stomach not liking fish and chips makes me a bit sad. But thanks guys. I hope this does stop soon so I can get some sleep :(
 
Susan2

Susan2

Quite right, T-nut, many of us live with not knowing what will/has set it off, even after years and years of living with it. Just another of the joys of Crohn's! :)
 
maimmie

maimmie

Alright! Good to have an excuse to eat junk at 4am I guess. I ate a peanut butter cookies awhile ago because I read pb thickens output but maybe not in cookie form.
 
Jaano711

Jaano711

Location
South Australia
Rice, pasta, cheese jelly babies all work for me at times. I love cola but it comes straight out as brown liquid when I drink it. Grab yourself a sports drink if you can to get some electrolytes back into you. Next time you have fish a nod chips you might be fine. Don't rule it out until your Stoma has started settling down.
Let us know what you find works with you. I've been known to whip up a batch of rice pudding (rice milk and sugar) in the oven. Rice really thickens me up.
Jano.
 
maimmie

maimmie

If only I had cheese cake right now! I think its getting better. I had a few handfuls of mini marshmallows and a half pb sandwich. I'm eating cheerios now. Been drinking gatoraid all night. Maybe I shouldn't have chosen the red flavour though. My output is now red.
I need to shop so I don't have a lot of different options at the moment. I'll have to remember to stock up on all the thickening foods.
 
annawato

annawato

Moderator
Staff member
Apples, peeled are great for thickening or apple sauce. Any soluble fibre foods, within reason (ie not prunes) will help. Porridge (oatmeal) is another good one. Google soluble fibre foods for more ideas.
 
Terriernut

Terriernut

Moderator
And of cheescake! :D But Psyllium Husk is very helpful for me. It is soluble fiber, and it comes in caplets, or powder.
 
Absentminded

Absentminded

annawato said:
My stitches came out by themselves however I now have a 'crater' around my stoma. Not too painful and not getting bigger so I'm assuming it will heal in time. It bleeds a bit but I think all new stomas bleed around the edges a bit. Has anyone else had this happen and do you think its ok to leave it and wait and see what happens?
Click to expand...
I'm sorry, I missed your post in all the talk about food!
Assuming I'm reading you right, I had this happen too. In my case it was so insanely painful, but I think I'm just a bit special. It's nothing to worry about and pretty common, but they can get infected if stool get in them, which is what happened to me.

My original stoma nurse was rubbish and didn't have much advice, but I now have a wonderful new stoma nurse and she has sorted it out. She said to clean out the "trench" (maybe use a cotton wool bud), puff some orahesive powder in, then apply some convatec orabase paste (squidge it right into the gaps using a little nozzle or syringe), finally I apply a hollister adapt barrier ring over the area. All this should help it to heal from the inside out, it might take a couple of weeks but it will get there. One of mine is completely healed and the other, which was really deep and super painful is getting there!

I had a thread on it called "mucocutaneous separation" which is what it's called. Hope some of this helps!
 
bigtruck

bigtruck

Another source of soluble fiber is methylcellulose it works in the same way as psyllium husks but doesn't ferment in the gut like psyllium does therefore isn't as likely to cause wind etc.
 
K

katiesue1506

I take the generic Benefiber equivalent and it helps. It's made of wheat dextrin so if you have no wheat allergies it should also help (less gas as well)
 
maimmie

maimmie

Question, do you wear the bag tucked into your pants? I know lots of people do but I can't seem to get comfortable with it. I feel like I'm constricting the bag and trapping the output in the top.
 
Hobbes650

Hobbes650

maimmie said:
Question, do you wear the bag tucked into your pants? I know lots of people do but I can't seem to get comfortable with it. I feel like I'm constricting the bag and trapping the output in the top.
Click to expand...

For me(n), it's best in between undershorts and pants. I don't like it too tight because then I get afraid the output gets bunched up at the top of pouch and then leaks.
 
Terriernut

Terriernut

Moderator
I tuck it in my underwear yes. If I have a leak (saints forbid) it's caught...so to speak.

It doesnt seem to constrict the stoma. Then again, I try not to wear anything tight anyway. Most every time I've had a problem, it's been due to squashing Stan (even slightly) and he gets MOST displeased. Which is why I can't wear any of the control garments they try to push on me for my hernia. (damnit)
 
maimmie

maimmie

That exactly what I'm worried about. But doesn't the waist band of your pants do the same thing? I've been wearing mine over my pants and just putting on a long tank top under all my shirts. But I figure at some point I may want different options. I'd like to get one of the ostomysecret bands to wear to support it but I still worry about squishing the bag too much.
 
Absentminded

Absentminded

I wear ostomy pants from Comfizz. They're like light control pants, and come up quite high around my waist.
I love them, find them so comfortable and feel really secure when wearing them. I might keep wearing them after my reversal as I like the so much!
You can get up to 6 pairs a year on prescription in the uk too!

The link is for the ones I have, in black though, wouldn't wear white with a stoma!
http://www.comfizz.com/products/ostomy/level1/ladies/ladies-high-brief-white.html
 
Terriernut

Terriernut

Moderator
My stoma IS in an awkward spot. So, I have to find trousers and undies that fit over him, not right on top of him.

If you try maternity trousers, you will be a happy girl. Maternity leggings are great for wearing as well.
 
K

katiesue1506

As a part of my uniform at work, I have to wear high waisted pants with a duty belt. The belt sits basically right on top of my stoma. Output does get squished to the top of the bag, but I consistently push the output downwards. Since I have to wear these pants and belt I can't usually let my bag get that full so it means emptying a little more often but its altogether doable.
 
Hobbes650

Hobbes650

maimmie said:
That exactly what I'm worried about. But doesn't the waist band of your pants do the same thing? I've been wearing mine over my pants and just putting on a long tank top under all my shirts. But I figure at some point I may want different options. I'd like to get one of the ostomysecret bands to wear to support it but I still worry about squishing the bag too much.
Click to expand...
The bag is probably more durable than you think. The conern for squishing the stoma is certainly valid, but remember not all stomas are made in the same spot. Mine is on my right side, just a bit below the level of my navel- high enough to never be an issue with pants.
 
2thFairy

2thFairy

I'm a hanger-outer. I can't stand having it tucked it. When I leave the house, I use a bag cover on the off chance that the wind catches my shirt and the bag is exposed.
 
maimmie

maimmie

I'm not worried about the stoma. Mine is high enough no pants would sit on it. All I'm worried about is the output not being able to get down to the bottom of the bag. That it will be all stuck in the top of it because the bag is squished in the waist band of my pants and cause a leak. Especially when I sit down. I may just not be a tucker-inner.
 
Terriernut

Terriernut

Moderator
Let her hang out then! Since all our stomas are in different spot, we all do different things. But gravity will usually get most of the stool down in the bag most of the time. (MOST of the time)
 
Absentminded

Absentminded

If you buy proper ostomy underwear you shouldn't have a problem. They are specially designed to be supportive, but not squish your stoma or keep the output from dropping down. If you do find that your output is staying at the top you might not have enough air in your bag.

I personally hate having my bag hanging loose! It feels so insecure and I just don't like it. But hey, each to their own! If you're comfortable then that's what matters! :)
 
maimmie

maimmie

Hmm no air in the bag may be part of the issue actually! I've been squeezing it all out so it lays very flat under my clothes. Maybe that's a mistake.
 
maimmie

maimmie

I also like to rinse the bag out with some water because the output sticks to the sides of it. But I've noticed the water does make the bag stick together some.
 
Absentminded

Absentminded

I find that I need a bit of air in my bag otherwise it all collects around my stoma (it's called pancaking) and can cause leaks because it forces it's way under the seal.
Just leave a tiny bit, it doesn't have to be blown right up! Sometimes I look at mine and it's managed to create a vacuum!! If I can't keep enough air in mine I sometimes use the stickers that come with the bags to cover the filter and prevent gas escaping.
 
Hobbes650

Hobbes650

maimmie said:
Hmm no air in the bag may be part of the issue actually! I've been squeezing it all out so it lays very flat under my clothes. Maybe that's a mistake.
Click to expand...

I'm not so sure about that. I would think no air in the bag comes from having a blockage. Wearing clothing that is too constrictive would cause air to collect at the top. There is certainly no harm in letting some air out of the bag so that it lays flat under your clothes. I haven't heard of "pancaking", but even when I empty my bag completely, there is always some air left in the bag. I'll do a little research to learn more about that term because right now, that doesn't make much sense to me.
 
2thFairy

2thFairy

Maimmie, I rinse mine out too and sometimes I do flatten too much air out. It can create a vaccum, like absentminded said. I see that especially with a fresh new bag. I have to remind myself to leave a little bit of air inside.
 
maimmie

maimmie

Ya I just don't tend to have much gas so my bag hardely ever gets all puffed up. If I've squeezed too much air out how do I fix that?
 
Absentminded

Absentminded

To get more air into mine, I take the bag of the baseplate and push the bag bit out a little, then clip it back on. If I've put too much in I just burp a little bit out.
Although, remembering that you find it hard to get the bag off you could try blowing a bit of air in the bottom?! I'm not sure how well that would work though.
 
Hobbes650

Hobbes650

2thFairy said:
I've had it happen, Hobbes, with no blockage.
Click to expand...
With an ileostomy? :confused:

That's a new one for me.

After reading the link, I would think this issue is more common with colostomies than with ileostomies. Seems like with thinner output from the ileostomy, that would make it easier for gas to come through.
 
2thFairy

2thFairy

Yep. Not too often, but more than once. Bob was all squished down and pretty pissed off once I got some air in the bag.
 
Hobbes650

Hobbes650

2thFairy said:
Yep. Not too often, but more than once. Bob was all squished down and pretty pissed off once I got some air in the bag.
Click to expand...

I must have to knock on wood from now on - I haven't had any stoma related problems. Oh well, I can't have EVERYTHING now can't I? :D
 
maimmie

maimmie

I got some hollister low profile samples today. I'm not so sure about them though since they don't lock like the coloplast I'm using now. I do find them easier to open though!
 
Absentminded

Absentminded

Hobbes650 said:
With an ileostomy? :confused:

That's a new one for me.

After reading the link, I would think this issue is more common with colostomies than with ileostomies. Seems like with thinner output from the ileostomy, that would make it easier for gas to come through.
Click to expand...
I have it happen quite often, hence why I ended up googling it. I only get it when my output is thicker (mine alternates between quite thick and really watery depending on how much I've eaten,) plus I don't get much gas.
It probably is more common with colostomies but not unheard of with ileostomies.
 
Hobbes650

Hobbes650

Absentminded said:
I have it happen quite often, hence why I ended up googling it. I only get it when my output is thicker (mine alternates between quite thick and really watery depending on how much I've eaten,) plus I don't get much gas.
It probably is more common with colostomies but not unheard of with ileostomies.
Click to expand...

I will take note should this ever happen to me. Perhaps it already did and I wasn't aware it was due to "pancaking"! I'm like you- my output varies from colored water to thick oatmeal (sorry for those who are eating while reading this!). It probably is thicker if I eat a lot at one time, but usually it depends on what I eat and drink. Today has been pretty liquidy but last night was not. Same story different day. I actually don't mind the watery stuff so much as it's quicker to empty and eaiser to clean.
 
annawato

annawato

Moderator
Staff member
If I'm wearing granny pants I wear it inside them but usually feel it 'bulges' more so I need to empty more frequently but it does hide the outline of the bag. If I've got smaller pants on I just let it hang free, tucked into shorts if I have them on but if I'm at home I let it hang out under a long top. So really depends what I'm wearing and where the waistband is. Agree with Hobbes that I don't like a waistband cutting it in half so to speak.
What are the ostomysecret bands? I'll google them but do people find them useful?
Oh and granny pants are good for supporting the bag - I assume thats what ostomy secrets does?
 
annawato

annawato

Moderator
Staff member
maimmie said:
I also like to rinse the bag out with some water because the output sticks to the sides of it. But I've noticed the water does make the bag stick together some.
Click to expand...
You can get lubricant that you squeeze into the bag and it helps to stop the bag sticking together or the output getting stuck at the top ( i think thats called pancaking). I don't use it myself cos liquid output (which is very easy to empty and clean) and the product I saw was from an Australian company. Perhaps someone in the USA knows of a product there?

edit: as usual I missed a few pages - don't know why but I sometimes only get one email about a new thread post. i then get all excited, answer or comment on that post only to realise I'm repeating everything already said or am now completely of topic - so apologies, but can't promise I won't manage to do it again. :) :) :)
 
Hobbes650

Hobbes650

annawato said:
You can get lubricant that you squeeze into the bag and it helps to stop the bag sticking together or the output getting stuck at the top ( i think thats called pancaking). I don't use it myself cos liquid output (which is very easy to empty and clean) and the product I saw was from an Australian company. Perhaps someone in the USA knows of a product there?

edit: as usual I missed a few pages - don't know why but I sometimes only get one email about a new thread post. i then get all excited, answer or comment on that post only to realise I'm repeating everything already said or am now completely of topic - so apologies, but can't promise I won't manage to do it again. :) :) :)
Click to expand...
Yeah, that happens with my emails as well. I think if there are a few posts all around the same time only one email gets sent. No worries though. We all think you're pretty crazy regardless. :D
 
annawato

annawato

Moderator
Staff member
Hobbes650 said:
Yeah, that happens with my emails as well. I think if there are a few posts all around the same time only one email gets sent. No worries though. We all think you're pretty crazy regardless. :D
Click to expand...
Haha, that makes me happy. Crazy is good. :)
 
maimmie

maimmie

Ya I actually just got some of that lubricating deodorant stuff in my samples from Hollister. I'm going to put some in when I change my bag tomorrow.
And I enjoy the crazy. Life is much too boring without it!
 
Nitaboo313

Nitaboo313

Finding pants that go over or under the ostomy sucks! I am wearing my maternity jeans and work pants I had when I was pregnant. I wear an extra pair of panties and tuck the bag in between. Then pull my pants over the bag. I only go through this if I'm going out or for work. At home I just let the bag hang out. Oh so comfortable........

I use the M9 drops and they are a lifesaver. No smell at all. I also keep a empty perfume bottle with water in it to rinse after each empty. I'm kinda anal about having a dirty bag. I use a two piece system with a filter bag. I change the bag everyday now, cause the filter doesn't last more than a day and I hate a gased up bag. They need to make bags with filters that have longer wear time.......
 
maimmie

maimmie

Its very true the liquid stuff is much easier to empty out. I don't seem to have much of that though. Mine is usually pretty thick and gooey. I actually think I'm a bit blocked up today. I haven't had much output at all today and am feeling a bit bloated. I've had a heating pad on my tummy and am drinking tea. It seems to be helping things move again.
I think I need to learn to chew better since I haven't eaten anything I would think would cause a blockage.
 
annawato

annawato

Moderator
Staff member
Could be chewing the food more - they say to do that. Best thing is to just have lots of liquids in case its a blockage.
Liquid is easier to deal with and generally less smelly I think but then it gives the problems of seepage under the baseplate. We can't win either way!
Hope the "blockage" clears soon and the belatedness goes away soon too.
:heart: anna
 
maimmie

maimmie

Yep feeling better now. Having lovely liquid output from all the drinking I've been doing. I even felt better enough to have chinese food for dinner! None of the veggie dishes mind u, just meat and rice. I love egg rolls and was pretty tempted but it not worth the risk yet.
And I totally pulled an anna and was responing to a post on a previous page when I wrote that last one. So you aren't the only one who does it!
 
annawato

annawato

Moderator
Staff member
haha, glad I'm not the only 'crazy'. :)
YUM, chinese food, I love it! Unfortunately my husband is on a low salt diet so we don't ever have it. Mind you I'm on a high salt diet so maybe I should treat myself! He can have his boring old meat and salad and I'll have Mongolian lamb, spring rolls, fried rice. Hmm just about anything Chinese.
Great the blockage passed - always a worry particularly so soon after the op.
:heart: Anna
 
maimmie

maimmie

I really am thinking Nita is super human for recovering so quickly. It will be 4 weeks since surgery for me tomorrow and my energy is still so low! By the time I get my son ready for school in the morning and fed I'm out of breath and don't have the energy for getting myself ready. I'm also usually ready for a nap every afternoon. That could be partly because I don't sleep great at night.
I just want to feel good again. Not that I felt close to normal before sugery.
 
Terriernut

Terriernut

Moderator
It's because yours was open surgery. Plus, you were very ill beforehand. Don't beat yourself up! Open surgery is very difficult to recover from.
:kiss:
 
2thFairy

2thFairy

Mine was open too. I was VERY out of breath for at least the first month and then it slowly...sloooowly.. got better. I was hospitalized for 2 days because of it, though all tests checked out fine. My energy levels picked up at 6 weeks, but the shortness of breath and rapid heart rate continued beyond that. I bet you will start to see improvement in the next few weeks.
 
maimmie

maimmie

I'm so glad you said that 2thfairy! That's exactly how I am. My heart rate has been rapid and I'm often out of breath.
 
Nyx

Nyx

Moderator
I was out of breath and had a very rapid heart rate as well. Part of that wound up being the blood clots I developed in my lungs during surgery, and part was the surgery itself. It eventually righted itself...after about 3 months. I had a very long recovery time it seems. Try and take it easy...take that nap if you need to and sit down when you can't breathe. I know you want to get back to 'normal', but it's best to let your body to its thing, in its own time. Easier said than done though...

Keep on keepin' on!
 
maimmie

maimmie

I haven't had bloodwork done since I left the hospital. I was supposed to have it done at my 2 week post op but I had missplaced my heallth card and the lab wouldn't do it without.
I know my potassium was low before I left the hospital but I'm taking a suppliment for that. I will definetly mention it to my doctor at my next appt.
 
2thFairy

2thFairy

In that case, you've had the hardest part done already as far as the toll it takes on your body.

You've been talking about how worried you are for a long time. Instead of being scared, read up on what is going to happen during surgery and during recovery and get prepared. May 2 is still a long way off, plenty of time to get ready.
 
Nitaboo313

Nitaboo313

Open surgery takes more longer to recover. the only reason I recovered so quickly is because I had it done laparscopically. Recovery time was estimated to be 4-6 week. I went back to work at 4 weeks. I still get tired at work, but since I have a sit down job, there is no strain at all. If I had a job that ANYTHING physical, I definitely would have stayed home longer. One thing I hate is emptying my bag at work. :poo:I hate that people can see my feet in the public restroom. Im always worried they will wondering why my feet are facing the ooposite direction since im a female....haha. :rof: And theres no place to put my order drops and water bottle (NO SHELVES). I use the visitor restroom when its not occupied, which is made for one person and is much more comfortable. You should definitely get your levels checked soon.......

I started back on Humira last week. I hate giving myself shots, but I guess this is my chosen "maintenence" drug!
 
Susan2

Susan2

Nita, do you have a 'handicapped toilet' available? They sometimes have shelves to put things on.

BTW, don't you think that 'handicapped toilet' is a funny term? Which bit of it doesn't work properly? :tongue:
 
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maimmie

maimmie

I hear you about the humira needles. I always got my husband to give it to me. I'll probably be back on it soon too. I don't feel like I'm having bowel symptoms but my back is killing me and my hips and knees ache. I assume its a bit of my arthritis symptoms coming back since I'm off any mantainance meds.
 
Nitaboo313

Nitaboo313

Our handicapped stall doesn't have shelves either. I end up putting my things on top of the toilet paper dispense. I have to be careful because its not an even surface.

Your pain could definitely be from not taking the Humira, I experienced the same thing.

I'm thinking about getting a note from my doctor to use the private restroom cause the public one is not going too well. Too much traffic and I feel way too uncomfortable in there.

Another thing is that my reversal is probably scheduled for June, is it crazy that I may want to keep my Stella longer than that? I feel so great.....haven't felt this good is years! What do you guys think about delaying reversal surgery?
 
Hobbes650

Hobbes650

Hi Nita! I can't remember now, but what did you have done which created the need for a temp ileostomy? 2thFairy is a little "special" in this case- wearing the ostomy is always a big improvement for us and usually not much of a "choice". I'm having a brain cramp now, as I can only think of having a temp ileostomy when having a j-pouch done, which you wouldn't do if dx with Crohns. Need more coffee. ;)
 
Absentminded

Absentminded

I've got a temp ileostomy to help heal the fistula I had going from my small bowel into my rectum. I'm having mine reversed in just over a month, I will have had it for three months.
 
Hobbes650

Hobbes650

Absentminded said:
I've got a temp ileostomy to help heal the fistula I had going from my small bowel into my rectum. I'm having mine reversed in just over a month, I will have had it for three months.
Click to expand...

That's a good reason. ;)

Don't know much about fistulas yet- been lucky in that sense.
 
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Herndog

Herndog

I had my ileostomy on Friday and get to go home tomorrow. Yeah!!!! Not excited to get my staples out do they hurt?
 
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