• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Newest member of the Stoma club!

Silvermoon

Moderator
Well surgery went extremely well, and Stan the Stoma is doing fabulous, so we are on our way home today! YAY! They were able to do the entire thing laproscopically, so I only have two small stab wounds and my stoma site, so recovery is going amazing!! I was up walking around crusing the halls about 7 hours after surgery and I haven't stopped since, so my surgeon finally said I could leave.. LOL!

Anyway, i will post more later when I get home and settled... just thought I would let you know (at least those of you that care...LOL!) where I was and what was up.....

Hope you are all taking care of yourselves.....

Squishy hugs....
 
Wow -that is so great! Good luck with the rest of your recovery. Do you have an Ileo or Colostomy?
 
wow! what wonderful news :D really pleased to hear how well it all went, and how good you're feeling!!! don't forget to still take it easy when you're home - even though your scar is small, you've still had pretty major surgery inside.

((big hugs))


oh - and you'll have to change your siggy now :D
 

Astra

Moderator
That is excellent news Silver!
Hope you and Stan have lots of health, wealth & happiness together!
Take care, rest well
xxx
 

ameslouise

Moderator
Great news, Silver! Glad to hear the surgery went well and recovery is under way. I'm sure you'll start to feel lots better very soon!

Take care and keep us posted on your progress!

-Amy
 
That's great news!! I am glad that you are feeling so well and that the surgery went well, but still take it easy :)
 

LOSTnut

Poopy
Oh, wow, Silver -- I am so happy for you and hope you and Stan will get along fabulously.
I am so happy for you and just wish mine could have gone the same way. Take it easy at home :)
 

Lisa

Adminstrator
Staff member
Location
New York, USA
Awesome news!....Glad you were able to have the laproscopic too - should make recovery so much easier!!!

Just remember to NOT overdo it!
 

DustyKat

Super Moderator
Oh Silver I have been wondering how you are! It's brilliant to hear you're going great guns, what a relief and going home to boot...............


:mbh::mbh::mbh:


Godammit Silver I am just so happy for you! :):):):):):):):):):):):):)

Looking forward to hearing more good news. Look after yourself mate.

Lots of love, :hug::hug::hug:
Dusty
 

Silvermoon

Moderator
Aww thanks so much for all the well wishes... :blush: ... gosh it felt good to be back in my own bed last night!

So here's the nitty gritty on the surgery:
The surgeon really wanted to perform a laproscopic surgery, so he was going to do everything in his power to make sure that happened. From a previous peek with a laproscope, he knew there were lots of scars and adhesions inside my abdomen, so he figured it was going to take a awhile. While he was in there, the gynaecologist was going to see if he could also take care of some kind of nasty thing on one of my ovaries, and clip my fallopian tubes as well.

The surgery took over two hours! Apparently I was "socked in" with scar tissue and adhesions from previous surgeries, flares, etc., so it took a while to clean some of that up. Unfortunately, after about an hour and a half, they still haden't found my ovaries or tubes, but both of them now feel the "mass" that was seen by ultrasound that was supposed to be on my ovary is probably just a bigger, denser ball of adhesions, so unless it starts to cause me pain or problems (which it really hasn't so far) they decided to just leave it, and didn't get to my tubes, but that part was kind of a "if you are in there anyway and can do it just do it" thing... so not a huge biggie.

They "ran the rest of the bowl" from the outside, and everything they could see was nice and clean (we know I have some inflammation around my rectum and about 15 cm up the sigmoid - that was seen through colonoscope) - so he pulled a piece of the sigmoid colon to the surface, cut a little slit in it, and made Stan! This is called a "loop" colostomy, I guess 'cause they just take a "loop" of the bowel and make a stoma. So it CAN be reversed if I want it to later - and at this point none of the intestine was removed (thank God, cause I don't have a lot left as it is!!).

Because I do have so much of my large intestine gone already, we are not sure that a sigmoid colostomy is going to be the same for me as a lot of others (ie, more formed stools, once or less a day) - it still may ACT more like an ascending or transverse colostomy - he is really active right now (emptying the bag about every three hours) but for me it is still better than running sandpaper over my bottom every four hours - AND my fistulas are already starting to change a bit! Still draining, but less foul smelling and less swollen, thus the happy smiling Silver at this point! lol!

However, it was a long stressful bumpy ride home yesterday (6 hours through freezing rain, snow so thick and hard you litterally could not see your hand in front of your face, nevermind the edge of the road, etc) but my absolutely wonderful hubby thought of everything - brought my more comfy 4x4 SUV to ride in (complete with a bed he made in the back if I needed to lay down all the way home!) rather than his big work truck - got me settled into the passanger seat and made sure I had my pillows tucked around me for support and that my water and pain meds were close at thand - and off we went! I am a bit more sore today than I have been the past few days - but I am HOME - so now I can spend the rest of the day settled on the couch in front of the fire watchin' movies - while he is upstairs doing laundry!! I really wish I could clone him so those of you who don't have someone could have someone just like him, cause let me tell ya, half the battle is having someone who TRULY understands, supports and loves you.... but he is mine and you can't have him... ha ha... lol!

Anyway, off to find more Toradol and a movie. Big squishy hugs to you all. And my greatest hope for 2011 is that you all find even half the relief I have right now.........

PS. Ding: I'll get around to my siggy later!!! LOL! ;)
 
hehe, the siggy can wait.... right now i'm looking around for an admin to go tell tales to coz Dusty just said godammit in here....... :D


you are so right about having the support of people who really care around you, and i'm so happy that you have such a wonderful hubby.. tell him thank you from us - you're a special lady and we know you're in good hands there.

wishing you a restful and complete recovery, and you'll have to keep us posted how Stan behaves once he's settled in properly - i don't think we have any other loop ostomists on the forum right now.

xx
 
I had one of those for about 6 months a temporary stomy in order to give my intestines time to heal and I felt great.

I'm really happy ou are feeling good. Grats!
 

Nyx

Moderator
That's awesome Silver!! I know what's it's like to have someone that really cares around you when this happens. My fiance came back from Alberta for my surgery and was at the hospital with me every day from 8am till 10pm (the nurses loved him so he didn't have to follow the rules...lol). Then I had my mom for my recovery. It makes the biggest difference.

I think once your guts slow down a bit, you'll find your stools gets more formed. I know when I first got Oscar mine were loose, but now they're like rocks...lol Hence the lack of a need for paste and not having to change my flange for a week :)

Glad you're home and doing well!
 

Silvermoon

Moderator
Stan is now 8 days old, and we have been home for 5 days and getting along not tooo bad... but holy crackers we have been sleeping lots!!!

Like many others have mentioned, to prevent leakage and/or air buildup during the night, I haven't been eating anything after supper (maybe a few crackers or something very light) so one thing I have found is I am waking up nauseated and my "first poop" of the day is very bile-like. I have never been a huge breakfast eater, so I am trying hard to change this and get something on my tummy first thing to try and prevent this.... it's a slow process...lol.

I have changed my appliance a couple of times now - and both times have noticed there had been some leaking right at the bottom of the flange.... my tummy is kind of rounded there, so it's almost like the flange has to bend under a bit to get a good seal, but in the meantime the skin underneath the stoma has gotten a bit red and raw - I tried some stoma paste with this last change to see if I can get a bit better seal there.... stung like crap!! (cause of the open skin I guess) but we will see how it goes.....

Other than that, I have just been sleeping a LOT!!! Of course, my hubby had to point out that, I have to remember this was not an "overnight" cure - so my body still has to heal a bit from the fitulas (which was making me tired in the first place) AND I now have to heal from surgery - of course my surgeon pointed that out to me as well - but apparently I wasn't listening to him at that particular moment - LOL!!

Anyhows - jus' a lil update from me and Stan. Hope the rest of you are hangin' in there and doin' the best you can to stay healthy.....

Luv and hugs..........:rosette2::hug::bigwave:
 

LOSTnut

Poopy
Hi Silver,

I hear you regarding the leaking and raw skin because after the hospital release I leaked pretty much not only on a daily but often 2 hour intervall basis.
After putting a thread out Cindy provided the phone numbers for all the mfg and I am finally doing much better.

First, never use baby wipes to clean yourself when you change the wafer. It has moisturizers in it that will break down the adhesives of the wafer. It is mentioned all over the place but it took me a while to realize that yes, water only works way better and you can dry it better.

Second, I got some skin barrier from the home health nurses and mfg that made a world of change. With the application of the skin barrier on the raw skin I can use the wipes that sting on the skin barrier to adhere the wafer better.

Third, I now use a convex wafer that seems to push the stoma out the bit that I need to prevent leakage under the wafer.

I learned the long and hard way and hopefully my painful experience will help you too.

You and Stan rest well and get well!! :) :thumleft:
 

LOSTnut

Poopy
Good Lord, I actually followed your advice regarding the baby wipes and then gave it right back to you. I guess they cut out some brain parts too ... sorry about that. :(

Still, since I never saw a stoma nurse I had to learn all by myself and the help of this forum and the last week was hell on wheels with the bag and leaking. But, after calling Hollister and Coloplast with the little knowledge I had and the free samples that came and are coming I feel a lot more confident that I actually will manage the next couple of months.

I have an ilieostomy and my stool is really fluid but for some reason I am not afraid to eat. So far, I have been waking up during the night when the bag got heavy and the one thing I haven't leaked on is the bed .... (knock on wood!)
With that in mind I have one question: does food taste ok to you? It seems my taste buds have taken a hit because a lot of stuff just doesn't really taste all that good anymore and I am not sure if that is something that came with the surgery or the tons of pills that I am still on. Do you have that too? :frown:
 

Silvermoon

Moderator
Good Lord, I actually followed your advice regarding the baby wipes and then gave it right back to you. I guess they cut out some brain parts too ... sorry about that. :(
LOL! No worries ;) ... we all have brain farts... but after reading your thread I called Hollister to see if they would send me a smaple of skin barrier to see if that works, so hopefully that comes soon :) (I never got much time with a stoma nurse either - about an hour - and she is in the city, about 6 hours away so sometimes hard to connect with her too - but oh well, I am pretty resourceful! ;) )

...does food taste ok to you? It seems my taste buds have taken a hit because a lot of stuff just doesn't really taste all that good anymore and I am not sure if that is something that came with the surgery or the tons of pills that I am still on. Do you have that too? :frown:
I haven't really noticed a different taste to food - if anything it is tasting better as I am also in the process of quitting smoking lol :blush: But I would suspect what you are experiencing IS based on all the pils you are still taking... I know when I was on Aza that everything kind of "metalic" - but it could also be effects of anaesthetic still in your body, it could be kind of a "mind thing"... who knows... lol. Still, any differences in anything I would still mention to your doc next time you see him. :)
 

Silvermoon

Moderator
Well Silver overdid it and ended up back in the hospital... :(

Somewhere along the way my (probably still infected from BEFORE the surgery) fitulas have flared up big time and landed me in the hospital under major antibiotics and major pain killers. That was Sunday. Today is Thursday and I finally was able to get out of bed... still weak and tired, but I thought I'd post a little message to let anywho who cared know where I was and what I was up to lol.

Will post more in a few days when I get home and settled back into my own bed.

Squishy hugs from The Moon
 

LOSTnut

Poopy
Awww, Silver, I am sooooo sorry about that and hope you will recover soon and be able to get home -- again.
:thumleft:
 

Silvermoon

Moderator
Update (if anyone cares) ...

For anyone out there who cares, sorry I haven't been around much.... I have been keeping up with the threads a bit, but overall I haven't been doing much of anything....

Silvermoon is feeling like a pretty useless piece of rock lately. :( I knew that surgery was going to take a little time to heal from, but I didn't expect months... I didn't expect complications; I didn't expect to have so many problems with the stoma; and I didn't expect to feel so depressed after. It's all I can do to get out of bed and sweep the floor or do the dishes... so now my husband is back to work full time AND has to come home and totally take care of his useless lump of a wife.

Both the surgeon and my tummy doctor tell me that I am right where they expect me to be as far as healing - that I expected to much of myself and am being to hard on myself - but it still makes me feel pretty useless - I spend half the day sleeping and the other half crying..... I guess if there is an upside it would be that there is less pain - it's not all gone, but at least it is less....

Anyhow, just thought I would let you know (just in case you care) that I am still alive and still here - just not very good at giving any advise right now or being supportive....

Maybe things will start to look better once the weather warms up...........
:depressed:
 

ameslouise

Moderator
Of course we care! Thanks for the update, glad to hear you are where you should be physically. Emotionally.... it can take a long time to adjust to everything, including how you feel physically!

Don't be so hard on yourself. And don't overdo it because you feel guilty. You just take your time.

And I agree... .we'll ALL feel better once we see the sun more often.

Hang in there. xo - Ames
 
We do care. We are like one big old family.

I remember when I woke up the first time with my new bag. I did not expect it I was going in for a herrnia nothing big. It really hit my hard. It took a while before I was my old self again.

DOn't get discourage. It's ok to feel down and sad but don't let it consume you. Better days are coming. Get your hubby to hug you tight. I'm sure he understands that you need time to recover. DOn't feel guilty just rest and aim to get better. It will happen.

And please use us talk to us we understand what you are going threough and you are not a bother So USE US!!!!!! :)

Big HUG!!
 

Astra

Moderator
Of course we care about Our Moon!
It's gonna take time, you've had major surgery, and it's gonna be hard too. So let your hubby look after you and the house, and you just watch rubbish daytime telly!
Lots of R&R, and you'll soon smile again, I promise.
It took me 6 months to recover from my hysterectomy so I know how you feel.
Take it easy Silver and we'll see ya soon enough!
xxxx
 
Hi Silver,
I hope things start getting better soon. When I had my surgery last April, I was just devastated - physically and emotionally. But slowly, things got better. Just give it time and try to take it easy on yourself!
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
Aww Silver!! Knowing you for the past year almost, I'm a little disappointed too. I was hoping to get the good old Silver back lickity split while you were still in the hospital bed. I guess we all need a little more patience.

Are you still working on your other endeavor, the cigs? I would imagine trying to break that addiction along with recovering surgery would really try one's emotions. I hope it all turns around soon for you Silver. We miss you!!
 

Silvermoon

Moderator
Thanks guys :redface: ....

I think the thing that is hardest to deal with is that I was SOOO looking forward to this surgery, thinking that maybe I could get quality, if not quantity, of life back a bit - and the fact that it was laproscopic should have made it "easy" to recover from - you'd think after 5 or 6 of these things I'd know better...

I have an appoinment with the psychiatrist tomorrow - still undecided whether or not to ask him for a "little help" to get me over this spell or just wait it out.... I guess we'll wait and see....

You guys are so nice..... I wish (I hope) that when I get back into a better state of mind I can give back the words of caring and encouragement........

Thanks..... :redface:

PS Over a month without a cig now, Mark.... doing not too bad, as I haven't really had the ambition to go outside for one anyway.....:eek2:
 
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Dexky

To save time...Ask Dusty!
Location
Kentucky
Silver, I'm so impressed!!! There's no shame in asking for help! You've had 25 years of this crap. It's been a particularly nasty winter and that's in Kentucky so I know it's been bad there. You have stopped smoking and I'm sure your body and mind are not happy about that as well. I hope spring is just around the corner Silver, physically and philosophically!!!
 

LOSTnut

Poopy
Hey Silver,

I am sorry to hear that you are so down. But, I completely understand. I had the same thought: once they cut it all out I'll be moving right along with life. And .... just like you ... it isn't so. Ask for the little help -- "Happy Pills" help. I never believed until this and the aftermath happened to me, and now I am glad that I have them to deal with the fact that, just like you i feel, like "a useless lump of rock."
We will get better and I hope and pray for you.

Take care, best wishes and hugs ... :rosette2:

Heike
 

Silvermoon

Moderator
Well I have now been off the antibiotics for almost a week, and I can feel infections/fistulas cropping up again :( Things were starting to look OK by the end of last week, so we thought we would take a break from the antibiotics and see how it went.... definitely not as bad as I have let it get previously, but I gotta get another prescription before things DO get out of control......

Not sure what to think about the "happy pills" yet.... I take 150 mg of Effexor on a regular basis - the psychiatrist wanted to add some Elavil (amitryptaline) to the regime, just to get me over "the hump" - the problem is.... I am scared. I had a problem in college with Elavil where I became addicted and kept increasing my dose to get to sleep - until I was up to almost 300 mg and my hubby was unable to wake me up at night, so he is a bit leary of it as well.

Plus, like he tells me (and I guess everyone else around me does too...lol :blush: ) I have been through a bit of a go lately, and it is probably relatively "normal" to be upset.... My question is - how long is it acceptable to "grieve'? Is there a point where the depression hinders the physical healing? I really think so - but I am not sure where my limit or timeline is yet. Yeah it's OK to feel tired and upset and cry, but for how long? I keep thinking "Tomorrow it will be better... the sun will shine and it will be warmer and I can go and sit out on the deck...." And then I wake up in the morning and all I can think is I wanna crawl under a rock and disappear...........

I have the prescription for the Elavil - I think I have decided (while I was writing this and wiping away the tears) that it is time to get it filled....

(Thanks for lettin me cry.... :blush: )
 

ameslouise

Moderator
Silver, I am so sorry you are still struggling. I hope the Elavil helps you feel better. At least you know the warning signs of what you went thru last time you were on it.

Dan Bergy has posted some info in another thread about Rhodolia Rosea, which is an herbal supplement that has been shown to be effective in treating depression. Perhaps worth looking into?

Hang in there. And come cry here anytime!


Amy
 

Nyx

Moderator
Sorry you're still having troubles Silver...I know this sounds lame, but it will get better! And come in here and cry any old time...we've all got big shoulders here :)
 

LOSTnut

Poopy
I never heard of those anti-depressants but that could just be a country thing. I am currently on Zoloft, because it also helps with the menopausal hotflashes.
I think my biggest problem was acceptance that I was very, very sick and subconsciously, every time I was home I felt pressure to do things that I shouldn't have been doing, which got me right back to the hospital. After the third time I checked myself and accepted that I needed the help of my family and close my eyes to the floating dust bunnies..... ya' know. I kept telling myself that if I would be in the hospital I couldn't do anything either and finally, slowly but surely, I got better. Still developed a fistula the other day .... oh well, just another bump in the road and pushing the planned resection out.
If you need sunshine you need to come down here to Southern AZ. Today, we will have 93 degrees and nothing but blue skies. Sit on my porch and "soak up the sun" and heal up.
How's that for a plan? :ybiggrin:
 

Astra

Moderator
Hiya Silver

hope you're feeling a bit better today, so sorry you're blue, hope the amitriptyline works out for you. I'm on 25mg and I don't ever want to stop it, it's been my Godsend.
I didn't take it for 2 nights last week cos I'd ran out of them, I soon knew about it!
I felt so down and achy and tired. I'm probably addicted to them, but I don't care, I love them! I'm also on day 2 of Rhodiola, I'm gonna post about it next week once it's kicked in.
We're all here for you, cry if you want to, you're entitled to.
Take care
xxxx
 

Silvermoon

Moderator
Well things are looking a bit better this week - three days and no tears, so that's an improvement....lol.

I have also finally accepted (I think) that if I feel good, get up and do something (but don't overdue it), but if I am tired it is OK to sleep. After I made up my mind that this was acceptable, I find I am sleeping less...lol. I still "lay down" in the afternoon, but usually on the couch and just watch TV - if I fall asleep, great. If not that is OK too.

AND I have been able to get up everyday and make supper and do the dishes, so that makes me feel LOADS better - I know it is a small thing, but I jsut feel SO wrong and guilty when my husband has to go to work everyday AND come home and do everythign I should be doing. I still need his help to do alot of other things (like vacuuming and laundry) but at least it is a start.....

Now if I can just get this dang course finished!!

Hoppe the rest of you are haning in there.....
 
Good to see you back around here Silver!
You know what I'm going to say- take it easy, Rest, Rest and then some more! Glad though that the tears are drying up. One day at a time!!
You're doing brill sweetie, Hugs xx
 

LOSTnut

Poopy
Whooohooo, Silver! Progress is made and I know how much those (actually not so) small things that you can do make you feel better. It is a HUGE step forward, the rest will come soon -- trust me :)
Here's to you [toasting with a glass of fruit protein smoothie!!!]
:cheers:

Heike
 

Terriernut

Moderator
Silver, I'm glad you've gone a few days without tears. I sincerely wish that every day brings you closer to feeling well again. Please go easy on yourself. You've just been through a very major surgery. I too went through one on the 22nd of Dec. I'm still not 100%. And I hold my hands up...I've had to fight depression. Mine is tears yes...but more being really pissed off! And no energy. There is nothing wrong with taking antidepressants to get through this!

I'm starting the Rhodiola Rosea as well.

By the way, our stomas names are the same! My Stan is a right bugger. I'd slap him senseless, but it would hurt too much!

Misty
 

DustyKat

Super Moderator
Hey Silver, :bigwave:

So sorry I have missed the updates hun...:eek2:

I'm so happy to see are starting to turn for you mate. Baby steps hun, it doesn't matter how long it takes you or what you have to do to reach your goal just as long as get there in the end, that's what really counts.

Don't be hard on yourself Silver, you have been through what most people will never have to face in their lives, except the other buds here, ;).

Thinking of you buddy and sending loads of squishy hugs across the pond...:hug::hug::hug:

Much love, :wub:
Dusty. xxxxxxxx
 
Hi Silver,
I'm glad to hear you are seeing some improvement. Thanks for your nice comments in my stomaversary thread.

I just want to wish you the best, and I hope things keep looking up!
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
Fantastic Silver!! Let it come to you!! Don't overdo things now that you are a "little" better!! Take it slow and easy until a little better becomes "hey, what stoma?"! Don't feel guilty!! Your husband knows what you've been through, your whole life!!
 
Silver- after my ostomy surgery, I was so depressed, and even though hard things were going on, it really didn't feel like my depression had anything to do with my situation.

Everything made me so sad! Stupid movies, even episodes of Malcolm In The Middle and That 70's Show made me feel desperately sad and cry! I tried to make lists of what i was thanks for and it all seemed meaningless. All I wanted to do was sleep. I was very worried I would never feel good again.

I honestly think it was chemical, and possibly had something to do with the anesthesia. That stuff messes with your brain. I also think I was surprised by how weak my body was after surgery. I wasn't ready for that. I felt like a little motherless kitten i was so weak, and it was really hard on me to feel that way.

But, after several months, I just started feeling better little by little until I got back to my happy strong self. You will too, but if you don't, don't feel bad about getting help.

I'm glad you are doing a bit better, and I hope things keep up that way. I'll be thinking of you!
 

Silvermoon

Moderator
So I lasted about 2 weeks with no antibiotics - back on them now - with a NEW infection added to the mix...... an abcess showed up next to my stoma a few weeks back, but it was draining so it wasn't too bad - would drain under the abdominal wall kind of thing and the litttle bit of pus would just show up in my bag.

Well last week when I was doing a barrier change I noticed two holes next to my stoma where the abcess is and the pus (still only very little bits, but still) is now draining out the surface. It doesn't seem to be causing the barrier to break it's seal, but because the barrier goes right over the two open spots, it hurts like (*^*&^*& when I have to change the barrier!! I guess it could still be worse - it could be PG or something - the doctor didn't even want to see it; just gave me the scripts for the antibiotics and said that should work.

So I just keep plodding along, hoping that someday things will clear up for more than a day at a time...lol. At least not EVERY day sucks anymore!!

Hope you are all taking care of yourselves.....
 

Terriernut

Moderator
Silver bless you. Have you shown the stoma nurse as well? She may have something to help you with that as well.

It can be one thing after another with new stomas cant it? I understand because my Stan isnt exactly mr wonderful yet either!

:rosette2:
Misty
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
Good to hear from you Silver!! Hopefully some of the old ostomates will have some insight for you. Dwell on the good days Silver! Please keep getting better!!
 

Nyx

Moderator
"old ostomates"....lol...I feel a club coming on....lol

Sorry to hear you're still having skin troubles Silver! At least you caught it early and hopefully the antibiotics will kick it's butt right away! Also glad to hear that not every day sucks for you :) One day at a time......
 

LOSTnut

Poopy
Hey Silver, you sound a lot more upbeat than just a couple of weeks ago and I am so happy for you. :ylol2:
It sure is a long, stony road.

Sorry to hear about the abscess and the draining. Oddly enough, I developed an abscess too, right under the big scar, thankfully for me a bit to the side so the wafer doesn't really interfere. It was cut open approx. 3 weeks ago but is still draining too and I keep it open by packing it. (Too afraid to let it close and cause trouble, i.e. pain)

I cannot even imagine how painful it must be to change the bag or just having the wafer over it. Will they give you more antibiotics?

I wonder if these abscesses are a "normal" occurence during recovery or is it a sign of "active" Crohn's just finding a new place to f*** with us?

Heike
 

Silvermoon

Moderator
Well I think things are back on track - for now anyway - lol. Back on antibiotics and things are getting beter again. It helps that summer is here and the sun is shining :)

Terri: We have one stoma nursse for a 1000km radius - and she is on maternatiy leave until Feb 2012! So I have been muddling through this with the help of collegues and local GPs - got pics of the holes and showed them to the GP - he wasn't happy - but even the holes are starting to heal now that I am back on the antibiotics - so now we wait again.....

being off antibiotics for 2 weeks set me back about 4 - but I am now starting to feel better again and get a few things done. Had to get an extension on my course though - so trying to plug away at that so I can get the durn thing done and get started on the next one!

However - right now I am off to play in the dirt for a bit and see if I can get a few veggie seeds planted - hubby planted the taters over the weekend, so I am going to spot in a few more seeds and see if I can get anything to grow!

Hope you all are doing well and hanging in there!

Squishy hugs from the Moon......
 

Terriernut

Moderator
Silver!!! Squishy hugs!

I have ALOT of problems with the skin around my stoma. Still do in fact. It helped to have the barrier rings. Also, a powder I was given from coloplast. It helps to heal up the skin.

I will continue to have problems until they get rid of my parastomal hernia because my guts want to come out. And it keeps ripping the skin around my stoma. So I keep using the barriers and the powders.

Have you tried these to help?? It absolutely sucks you dont have a stoma nurse! Make sure your flange fits realy snug over your Stan.

Which appliances are you using?

:hang:
Misty
 

LOSTnut

Poopy
Yay, good news from the Moon. :cheers:

I am muddling through all that stuff by myself too. Had 3 unpleasant experiences with appointments that didn't happen with the Stoma nurse and deciced to try by myself as long as I can. :ymad:

Anyhow, the other day I read about ConvaTec moldable wafers, that don't require cutting the hole anymore and are supposed to form themselves really snug around the stoma. They also have that hydrocolloid wafer, that is supposed to be thin and good for the skin.
You can check it out on their website.

I have ordered some samples of this, at least to me, new stuff.

Good luck and good harvest! ::):

Heike
 

Terriernut

Moderator
Ohhhh, I like the sound of the convatec wafers. I'm gonna try them.

Let us know how you get on with them too??

Misty
 

Silvermoon

Moderator
Yes, for sure let us know!

right now I am using Hollister New Image products (cause that is what the insurance company approved for me at the time) - I have been looking at some of the Convatec stuff, but not sure where to get samples from in Canada yet - may have to look into that a bit more....

Right now I use a non sting spray on skin barrier, then a powder to the "weepy" bits, then the Hollister skin barrier (my stoma is still about 1 3/4 inches in diameter!) - and it works pretty good for now - lasts about 48 hours if there are no major accidents and I be sure and get everything on straight - lol.

I may have to look at something different if I get a bit more active though, - at 1 3/4 in stoma there is not a lot of "barrier" left around the stoma to stick to, and may start to leak if I move around too much.... (I hope not though
!!!)
 

Nyx

Moderator
Here's the numbers for the other ostomy supply companies:

Convatec: 1-800-465-6302
Coloplast: 1-877-820-7008

Get freebies!! I'm actually calling Coloplast this afternoon to get some samples of non-drainable bags and to ask if they've changed their filters - I've been having problems with the filter going on my bags after only 2 days! And since I don't have supply coverage, I need them to last longer than that!

My stoma's at 1 3/4" too...and I like that there's no barrier around my stoma, makes the poo just drop into the bag instead of sticking to the inside of the flange. I found when I used a bigger flange I was having seepage under it. Haven't had that since I switched to the smallest flange I could get away with though.
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
I don't know jack about stoma supplies but it sure is good to see a positive update from you Silver!!:). Hoping for many more!
 

LOSTnut

Poopy
Will do, Misty!

It took forever but yesterday finally the Cymed stuff came. They are sure stingy with the samples. But, I am wearing one right now and so far, I have to say it is a rather pleasant feeling not to have the somewhat bulgy wafers of the "big" 3.

I cannot wait to see if the showering works with them as they advertise. ::):
 

DustyKat

Super Moderator
Hey Silver, :bigwave:

How are you hun?

I am so hoping that everything is moving forward and that no news is good news...


Always thinking of you...:hug:

Much love, :Karl:
Dusty. xxxxxxxx
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
Hey Silver, I'm with Dusty!! Haven't heard from you in a while just wondering how you are doing these days?? I miss seeing you around here and elsewhere!!!
 

Hoping you are doing much better Silver...
Just know that we're all here for you and wishing you well.
Healing Hugs~Nancy
 

Astra

Moderator
:bigwave:

Hiya Silver!

I've been thinking about you too!
Hope you're ok!
sending lotsa luv your way
xxxxxxxxxxxxxx
 
Hi all. Just a post to let you know:

Silver hasn't been doing so well lately, and we have her admitted to the hospital for some help with a few things. This last surgery has really been hard on her, and she is having a pretty rough time.

I know she has still been reading as many posts as she can each day, and trying to keep up with the goings-on around here. You all have been a huge support for her, helping her in ways that I can't always by sharing your stories and advice on how to manage and deal with things that come up, and for that I am forever grateful.

Thank you so much for your kind words and support. Hopefully my little Silvermoon will be up and going again soon and back here to give you all the same support she has gotten from so many of you.

Take care,
Hubby (of Silvermoon)
 

DustyKat

Super Moderator
Thank you so much for the update Hubby!!!

Hey Buddy, :bigwave:

I'm always thinking of you hun and sending my (((love))), (((hugs))) and (((healing thoughts))) across the pond. I hope and pray more than anything that this hospital stay will sort things out for you and put you well onto the path of recovery...

:goodluck: AND :getwell:

All my love mate, :Karl:
Dusty. xxxxxxxx
 

LOSTnut

Poopy
Hey Silver,

sorry to hear that you are back in the hospital and I hope all problems will get squared away soon. Get well soon and take care of yourself.

Best wishes and hugs,
 

Nyx

Moderator
Thanks for the update Hubby...I hope the problems aren't that serious and that Silver's out of the hospital soon and healing :) Give her hugs from me please!
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
She really put things in perspective for me once upon a time Hubby!! She's such an asset to us all! I wish I could take it off her shoulders for a while!! Thinking about you Silver!! Get better friend!!!
 

Terriernut

Moderator
Thank you for updating Hubby!

Silvermoon, I sure hope your stay in hospital is brief, and very effective.

We miss you and your wit and wisdom around here.

Healing cyberhugs!
Misty
 

DustyKat

Super Moderator
I have had an update from Silver...

She wants you to know that she is doing okay. As her hubby has said, this last surgery has taken it's toll, many setbacks as you all know, and she will most likely be in hospital for a while.

She wanted me to especially pass onto to you her wishes that you are all doing well and to let you know that she is thinking of you all.

We're thinking of you too mate and wishing nothing but the best for you!

:getwell::getwell::getwell: We miss you!

Love ya Silver!...:Karl:
Dusty. xxxxxxxx
 

Silvermoon

Moderator
Hi Guys :bigwave:

Thank you so much for all your wishes and hugs. :redface:

It looks like my stay in hospital may be a bit lengthy this time (a few weeks maybe) but hopefully I can get some of the help I really need so I can get back to life and move on.

I have my laptop with me, so I will pop in once in a while to check up on all of you, so make sure you behave... lol.

Until then good wishes and squishy hugs from The Moon.



PS Thank you , Dusty and hubby, for keeping people updated.....
 
It's SOOO good to hear from you Silver!!!
You just rest and pop in when you can or
have hubby give us another update if you don't feel up to it.
Please rest and heal...we're all behind you!
Healing Hugs~Nancy
 

LOSTnut

Poopy
Hey Silver,

it is good to hear from you yourself and I hope you will be able to keep it up, which would be a positive sign, right?

May I ask what kind of problems you ran into that got you back in the hospital?

Thinking of you ... and "squishy" hugs back. :)
 

Terriernut

Moderator
Oh Silver....squishier hugs back at ya!!! And us bag ladies do really squishy hugs!! :blush:

Hope the hospital can get you all sorted luv. I'm glad you have the laptop and can keep in touch with us, cause we've been worried!

Misty
 

Astra

Moderator
Hiya Silver!

I'm so sorry you've had a bit of a setback in your recovery, really hope this hospital stay sorts you out.
Take care Oh Special One!
Oh, I'm doing well thanks, but I'm not sure whether I can behave! I'll try me best!
xxxxxxxxxxx
 

Terriernut

Moderator
Hiya Silver!

I'm so sorry you've had a bit of a setback in your recovery, really hope this hospital stay sorts you out.
Take care Oh Special One!
Oh, I'm doing well thanks, but I'm not sure whether I can behave! I'll try me best!
xxxxxxxxxxx
Joan....please DONT behave. You're just perfect the way you are! Our Silver would get worried if you behaved, wouldncha Silver?

Misty
 

DustyKat

Super Moderator
Hey Silver!!!

So fab to hear from you mate!

I hope you are starting to feel even a little better hun. Hell, I'm just so chuffed that you are back here again...YAY!

Sending you mega loads of (((hugs))) and (((healing thoughts))) so you should be getting them real soon!

Much love buddy, :Karl:

:mademyday:
Dusty. xxxxxxxx
 

Silvermoon

Moderator
Thank you so much for all your kind words and well wishes.... it means a lot to me.... :redface:

Heike: I guess just the everyday hassle of fighting so much started getting me down.... I'd have a good day or two and feel loads better, then have another set back where I'd wake up in the morning and just feel like crap - bit of a temperature, infections a bit more inflammed than the day before, etc. Then the skin around my stoma started giving me troubles: lately I have had a leak every single day, so going through skin barriers like crazy - and the changing of them every day wasn't improving the skin any.

I woke up one morning a few days back and I just didn't want to deal with it anymore. I was exhausted from lack of sleep (the leaking of the barriers was forcing me to sleep to one side, so I developed a bit of a bed sore on that hip - not serious, but enough to be uncomfortable, and the ear I was laying on started developing a sore for some reason); I was tired of being back to where I was before surgery of not being able to go out anywhere for fear of having an accident, and I just had enough - got up, took a few sleeping pills and went back to bed - I just didn't want to deal with it.

Hubby came in a few hours later and had a hard time rousing me - so he ended up taking me in to the local emerg. department. The mental health services in my area are sadly lacking, so I agreed to go out to the next major center and get some help. So here I am. :redface:

Anyway, the only stoma nurse for about a 600km radius is off on maternity leave, but there is a support group in the area, and the nurses down on the medical ward have had a lot more experience with stomas and such than we have had in our area up north, so as well as going through in-patient councelling and such, I am getting some help in that area. The psychiatrist has changed my medication to see if there is something better suited for me - and my Crohn's specialist is here to monitor that side of things - will have some scopes done while I am here to see if any healing has gone on at all.

I feel like such a fool - such a retarded thing to do; but I guess I didn't have such a good handle on things as I thought I did. So I guess maybe this is a good place for me to be right now. Forces me to slow down anyway... lol. :redface: Maybe we will all get it right this time and things will go better next time I am home instead of so many ups and downs.

Enough whining for now - lunch is here (yay - :rolleyes: ) so I will sign off for now.

Hugs to everyone, and thanks for listening and caring :redface:

PS. Of course I don't expect Joan to behave - I'll have thought the world was for sure off it's rocker then - lol (I'm just kidding, Joan - thank you for the smile....)
 

Astra

Moderator
Ha Ha girls!
Am I THAT naughty?
Hey Ho Silver, I will remain misbehavin, just for you!

Sounds like you've had a rough trot there girl!
Hope you're beginning to mend, we need you back!
lotsa luv n stuff
xxxx
 

Terriernut

Moderator
Silver sweetheart, anyone can get down with all thats happened to you! I want to say thank you for being so brave. You've gone up in my estimation 1 million fold. From now on...you've got a friend in this corner of the world.

Get well, you are on the right track! I want you well so we can giggle together. And you will someday laugh about all this. (i keep telling myself this as well)

Majorly big squishy hugs from the pigmy/poo fairy!!!!!!!
:ghug:
Misty
 

Nyx

Moderator
It's great that you're getting the help that you need, both mental and physical. Most people would have just plodded along miserably instead of doing anything about it. Good luck! Keep us posted on your progress :)
 

LOSTnut

Poopy
Hey Silver, thank you for being so open. I know because I was counting the Diazepam (Valium) at one point too.

I am happy you are getting such good help all around and taking advantage of everything that is offered. Hopefully, the bag issue will be resolved soon. I think it is a major point in getting well in all aspects. And, I am really glad that your hubby came home when he did. :)

You had your surgery shortly after I had mine and became my hero because you were doing and dealing so well. I still remember sitting on my couch, admiring your courage and strength. So, please, get back on that pedestal for me, will ya'?? :worthy:

Sending lots of love and thoughts your way and, just for the heck of it I throw in a :rosette2:
 

ameslouise

Moderator
Hey Silver - just catching up on this now. So sorry to hear your problems both emotional and physical that have landed you back in the hosp. But it sounds like you are in the right place and heading in the right direction.

We're all rooting for you!

xo - Ames

PS Thanks to Hubby for keeping us posted!!
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
Silver, I've stared at your post for twenty minutes trying to think of something to say. I certainly don't judge you, you've been through so much hell your whole life. I have no idea what that's like and I can't imagine. I pray things start getting better for you. You are kind and wise and you don't deserve any of this!! Get better you sweet lady and come back to us!
 
Hi Silver,
Just wanted to wish you well and I hope that you are recovering physically and emotionally. When your body gets beat up over and over again and you can't get a break the mind at some point is gonna start getting beat up right along with it.

I hope they can give you a head start on healing and then your emotions will follow suit.
Good luck, take care. Rest up and get better!
 
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