10 days post ileostomy op! :):):):)

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littlefreebird

littlefreebird

Joined
Jun 27, 2011
Messages
308
hi everyone, i got out of hospital yesterday (day 9 post op) went back briefly today at midday to get my 28 staples removed woohoo! still can't stand up straight completely and felt like i couldn't take a deep breath this morning, can't shout, can't cough and have only recently been able to laugh a little due to the tummy muscles being quite sore lol.

the surgery went well, the surgeon told me that my rectum and backside were absolutley dreadful, one of the worst cases he'd seen, he's worried about the stitches healing as he said the skin is very weak down there, so i'm getti a commnity nurse that comes out weekly to check on my butt's progress lol. the surgeon also told me my bowel wouldn't of made it another 4 weeks, he said it basically fell to pieces as he removed it. keyhole would have never been an option for this reason.

the only hiccup i had was the epidural before the surgery failed to work, he couldn't get it into my spine in the right place. it wasn't overly sore to get done bt apparently it doesn't work for 1 in 100 people and that 1 just happened to be me lol. so i woke up on a morphine pca drip, this did not work as i am a regular tramadol taker as pre-surgery i had a lot of pain. this meant that fir a week post-op the pain was pretty bad, i asked my mother to ask all family and friends not to visit as i couldn't even speak.

10 days post op, i have an appetite :) i can eat pretty much what i like from the start which surprised me (apart from high-fibre) and i'm completely avoiding foods i hear 'might' cause blockage as i wouldn't even want to risk it, so i celebrated my first night of freedom eating a restaurant chinese carryout :) of duck and rice hmmmmmm!

i'm wearing a 1-piece coloplast drainable bag in the smallest size and a dansac bag that is practically the same, i'm happy with the size and it hasn't let me down yet :) my stoma has shrunk loads this week from 35mm to 29mm and is about 2 inches. when i put my hand on my tummy to feel it, it feels really cute lol!

was worried about cramps and knotting sensations from the stoma that i had been getting but thankfully they're reducing everyday. in general feel a lil rough but keep remindng myself i had surgery 10 days ago and i'm so relieved the worst is over :) bring on the new life!! woohoo!!
 
Honey! So glad to hear you're doing well and on the mend. Hope that skin cooperates. Keep giving yourself lots of rest and relaxation. You're recovering, take care of yourself, forgive yourself for your limitations (I know it's tough).

28 staples! I'm glad I didn't get a count. But that's a lot! Thanks for the update.
 
So glad you're ok! Was anxiously waiting for an update as it seemed like ages since you had your op.

Hope you enjoy your duck. What a treat! So lucky that you had your op when you did in that case. Glad having open surgery was the right thing for you all along.

Now to getting fully recovered. Yey!
 
So very happy to hear from you! You sound remarkably well. I'm very very sorry that the pain was so bad and not really treatable post op. God sake that must have been beyond awful!

Please, please, take good care of yourself, and take it very slowly. We want you happy, healthy, and eating beans soon!!
 
HI ! :)

I can't imagine having to deal with that pain without the pain meds working..you poor thing! :(
I am so happy to hear from you though and glad you are eating and recovering well! yeah!!
I hope your new stoma gives you a long, long remission and happiness !!

:ghug::ghug::ghug:
Congrats! :)
~T~
 
Hi! :)

I'm glad everything went well and that you are getting better every day. Feels good to be able to eat everything, don't it? :)

Take care!
 
Wonderful to hear from you! Like everyone else has said, take it easy and rest, rest, rest! In the next few weeks you're going to want to get out and do things that you're probably not supposed to be doing...but resist!! lol Glad you're able to eat whatever you want so soon! That duck and rice must have tasted like heaven :)

Hope the rest of your recovery is boring and uneventful!
 
All the best littlefreebird.

Am new here, but had my surgery a few years ago.

My epidural failed in my initial op, I was told it was more like 1 in 3 cases that failed then! I guess the odds changed!

All the best with your recovery, give yoursefl plenty of time to relax and don't push yourself too hard, it can take a while to get back to normality. I hope it goes well!:thumleft:

Gav
 
What an ordeal for you littlefreebird, but well done on sounding so chirpy. Hope thats all your problems over with from here on in.
Best Wishes
Grant
 
glad you're feeling better,same thing happened to me after my op with the meds not working cant believe how chirpy you sound after all that it took all my strength not to cry everytime someone so much as looked at me haha im almost 4 weeks after my op(had open surgery too) and its only this week im starting to feel a bit back to normal so just give yourself some time you'll be back to normal in no time,oh and get plenty of sleep i find i get tired a lot easier but once i have a nap i feel ok
best of luck x
 
well done you've been through a lot and you sound so positive which is great to hear. Take care and enjoy your new diet.
 
Wow Congrates!! I am so glad to hear that you are doing better!! i cant imagine the pain you went through! i am sorry to hear that!! I am glad to hear that you can eat almost everything tho!! You are so positive and beautiful!
 
Hey LFB! Great to hear from you and welcome to the club! This is where the cool kids hang out! :)

Keep resting, take it easy, lots of fluids.

And not too much Chinese take aways!

Glad your bag choice is working well so far, hope you heal quickly and easily, and any questions, fire away to us old pros!!

xo -Ames
 
thanks everyone!! it's weird but i'm nowhere near as tired as i was before my surgery!! i kinda wish i was cause i'd like to sleep more but i'm just not tired anymore! i'm gettin rather frustrated with wanting to lie down when i'm sitting up and wanting to sit up once i've lay down. thankfully i'm able to sleep on my sides again but i'm just very restless at the min. if people ask me how i feel i tell them i feel rubbish, yet when they ask why i can't explain why, i just do.
i'm looking forward to trying more products and buying a few bits for my wardrobe when i'm feeling better.
i'm so impatient!!!!
 
I am so happy everything went well (besides the failed epidural)! We all have been thinking about you.

I must say, you are such an impressive young lady! You are so brave and have a wonderful attitude. I wish you nothing but the absolute best!

Enjoy eating and rest up so you can do some shopping soon!
 
littlefreebird said:
if people ask me how i feel i tell them i feel rubbish, yet when they ask why i can't explain why, i just do.
i'm looking forward to trying more products and buying a few bits for my wardrobe when i'm feeling better.
i'm so impatient!!!!
Click to expand...

Oh I can totally relate to this! I feel like there's nothing wrong with me so why can't I do the things I want to do!? Either because the surgeon says no or I don't have the stamina.

Just keep reminding yourself that you just had a seriously major procedure/shock to your body. You may not be able to explain why/how you're feeling, but you are feeling it. Just relax and go with it. If you allow yourself to get the rest you need and heal, you'll be feeling good and up to whatever in no time! The patience is tough, but necessary and worth it! Hope you're feeling better soon.
 
How wonderful to hear you are doing so well!! Enjoy your rest and relax. You will be healed up soon. Take care and if you have any questions we are all here:)
 
LFB, after my surgery I was the same. I was still on pred! I think it took me much, much longer to feel well because I simply couldnt sleep.

Are you still on pred?
 
Hi, so glad to hear that your surgery and recovery is going well :) i had surgery 3 weeks ago and no have an ileostomy mucus fistula and gastostromy tube which is hopefully coming out next week.

anyway i hope you continue to recover aswell as you are doing :)
 
It is great to hear you are doing so well, i am on week 4 post surgery and feeling good but still feeling very fatigued, sleeping 12 hours a day. Not in any pain after having my staples removed (43 in total). Keep your chin up and remember our bad you were before the surgery and how well you are going to feel now.

Adrian
 
Congrats!, Seems like things went better than you expected, just chill out and take it easy, it's good to hear everything went well.

: )
 
So happy that you are on to recovery. Thanks for taking the time to post. I am going in on Aug 19th for my surgery.

Wishing you a speedy recovery.

:thumright::cheers::hang:





littlefreebird said:
hi everyone, i got out of hospital yesterday (day 9 post op) went back briefly today at midday to get my 28 staples removed woohoo! still can't stand up straight completely and felt like i couldn't take a deep breath this morning, can't shout, can't cough and have only recently been able to laugh a little due to the tummy muscles being quite sore lol.

the surgery went well, the surgeon told me that my rectum and backside were absolutley dreadful, one of the worst cases he'd seen, he's worried about the stitches healing as he said the skin is very weak down there, so i'm getti a commnity nurse that comes out weekly to check on my butt's progress lol. the surgeon also told me my bowel wouldn't of made it another 4 weeks, he said it basically fell to pieces as he removed it. keyhole would have never been an option for this reason.

the only hiccup i had was the epidural before the surgery failed to work, he couldn't get it into my spine in the right place. it wasn't overly sore to get done bt apparently it doesn't work for 1 in 100 people and that 1 just happened to be me lol. so i woke up on a morphine pca drip, this did not work as i am a regular tramadol taker as pre-surgery i had a lot of pain. this meant that fir a week post-op the pain was pretty bad, i asked my mother to ask all family and friends not to visit as i couldn't even speak.

10 days post op, i have an appetite :) i can eat pretty much what i like from the start which surprised me (apart from high-fibre) and i'm completely avoiding foods i hear 'might' cause blockage as i wouldn't even want to risk it, so i celebrated my first night of freedom eating a restaurant chinese carryout :) of duck and rice hmmmmmm!

i'm wearing a 1-piece coloplast drainable bag in the smallest size and a dansac bag that is practically the same, i'm happy with the size and it hasn't let me down yet :) my stoma has shrunk loads this week from 35mm to 29mm and is about 2 inches. when i put my hand on my tummy to feel it, it feels really cute lol!

was worried about cramps and knotting sensations from the stoma that i had been getting but thankfully they're reducing everyday. in general feel a lil rough but keep remindng myself i had surgery 10 days ago and i'm so relieved the worst is over :) bring on the new life!! woohoo!!
Click to expand...
 
thankyou and good luck with your surgery! :)
adrian, thanks for sharing your story!
this healing business is a slow and tiring process
martin, that doesn't sound good, were they complications from the surgery? wishing you a speedy recovery.
misty, not on the pred anymore, i was only given a 5 day course before surgery.
my GI took me off the pentasa i was taking, i'm currently on no meds now (obviously apart from tramadol for pain which i'm trying to cut down.)
:)
 
its 25mm today...the skin is a lil irritated because it shrunk whilst i was wearing a bag cut for 30mm. i hope this calms down, i don't want skin problems already!! very itchy.
 
You might want to get some barrier rings from your stoma nurse. You put this moldable ring on around your stoma, then the bag. Also there are powders to help with irritated skin. When are you seeing your stoma nurse?

Dont be bashful if you arent seeing her for a few days, ring her and let her know. She should be able to help you straight away.
 
thanks for the advice on barrier rings i started using cohesive slims and they have helped though i'm not sure if the itchyness was due to exposure to skin or just the stitches dissolving. either way it has eased more thank godness it was driving me mad!

(21 days post-op) anyway, didn't get great news today. i was getting the perianal wound checked and the nurse asked me 'what am i meant to be looking for?' i replied, 'my perianal wound' she then replied, 'what exactly have you got done?' i was getting rather annoyed that she had obviously not read my notes and said, 'i've had my intestines removed and 'everything' sewn shut.' she paused and then said, 'oh right, i see, you still have a small hole there, looks very sore.' i was completeley shocked, havent had looked at it myself, she was right, the surgeon had warned me that the skin down there was very weak and he was hoping it would 'hold together'. which it obviously hasn't, i'm going to phone him in the morning but it looks like i'm gonna have to get re-stitched GGGGRRRR!
 
Hopefully this will be your only blip LFB. And yes, some visiting nurses can be shockingly bad. Alot are good though.

Hope they get you in straight away at Dr's.
:hug::kiss::hug::kiss:
 
Surprisingly, they don't seem to re-stich these wounds. My doc said it's because it's not sterile anymore. In my case, my perianal switches opened completely while I was still in the hospital. It took a long time (many many months) to heal, but my wound was very large. Hopfully, yours will heal more quickly!

Once I was basically recovered from surgery, the open wound did not really bother me, and I was back to work and all activities.

Good luck!
 
LFB, I'm so glad Joe has replied...I've not had mine sewn shut yet, so I didnt know what to say!

How are you doing today, were they able to help at all at the Dr's?
 
i've been given anti-biotics for it and i haven't heard back from the surgeon yet but agreeing with joe, it's not bothering me, and if she hadn't said i wouldn't of known.
 
I'm glad they got on top of it for you. I'm even more glad it's not bothering you!

How are you feeling? Are you just a little bit better day by day??

:kiss:
 
Hello littlefreebird, hope you continue your road of recovery. Today it's my turn. I am going under at 1 pm in Georgia.
 
Gwen, all digits crossed for you here!!! Do start a thread to tell us how you get along!
:ghug::hug::ghug::hug::ghug::hug:
 
yes gwen goood luck!!!! hope all goes well for you and you get some relief.

yes thanks misty, i've been getting out a bit more on small shopping trips etc and i've gained half a stone (now 6stone), its honestly hard work stuffing my face, not to mention expensive!! lol i'm nearly 4 weeks post op and think i'm ready to drive. (i passed my test a few weeks before my op, and my car has been sitting in the driveway for 10months, so i'm going to book the MOT and get it on the road, so excited! lol hope all is well with you! is your ileostomy temporary?

i wanted to ask and didn't really want to start another topic but i'm d..y..i..n..g to eat fruit again but want to start with fruit that will definatley not put me at risk of blockage, so would you recommend any??
my favourite fruit is kiwi's and mango (mango was on blockage list leaflet i was given though :(
 
Hey Littlefreebird,
What I have heard is that most blockages are not caused by any particular food, but by internal scar tissue and adhesions. So it sounds like some luck is involved here - either you will be prone to blockages or not.

In my case, I am not. In fact, I just enjoyed a kiwi and I eat lots of fruit and vegtables every day. I don't recall exactly, but I probably waited until i was mostly recovered before expanding my diet (about 3 months for me). So start very small and see how you do and chew well. I don't even worry about chewing well anymore - I just eat like I did in the past - I hope that does not catch up to me!
 
Hi Littlefreebird,
I totally remember the fruit craving that I had almost immediately. The way I got around it was my hubby made me smoothies with all of my favourite fruit and some orange juice to thin it out. You can even pop some yogurt in there to benefit from the probiotics.
After 4 weeks I tried strawberries whole, it definitely caused me some pain. In hindsight I would have waited another couple of weeks. We are all different though, so whatever you go ahead and try, chew the heck out of it to be sure ;-)

Good luck!
 
It is fantastic to hear that you are doing so well post op! Like everyone else has said, take it easy and rest, rest, rest! In the next few weeks you're going to want to get out and do things that y as much as you can and allow your body to heal even when you feel more energetic. lol. It is great to hear that you're able to eat whatever you want !
I wish you the best in your recovery and dont hesitate to reach out with any questions.
 
LFB, I couldnt wait to drive either. I was going NUTS stuck inside the four walls! But, my insurance company didnt want me to drive for 8 weeks after surgery. Hummph! Well, they may be right, we arent the full ticket shortly after surgery to say the least.

As for fruit, I'm still being careful. Soft fruit, no seeds for me. The smoothies and the juices are fine for me. Poor Ameslouise just had a blockage due to fruit, so I'll take mine carefully for awhile.
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
 
Hey Littlefreebird,
Like CDDAD, I am lucky and not prone to blockages as I can eat virtualy anything and everything as long as I chew well the food. I have heard that some blockages are caused by certain foods such as corn, nuts, seeds, and fruit and vegetable peelings, agrevated by internal scar tissue and adhesions.
I waited 3 months post op until i was mostly recovered before expanding my diet beyond the "safe foods".
I had one time a little problem that reminded me that I need to chew well when I had too much pistachios and didnt chew well.
It will be a trial and error for you as you introduce new foods to your daily diet.
 
Nyx said:
Just as a point of contention...Ames had problems with wheatberries, which are not fruit, but whole wheat kernels :) They're really quite tasty in a salad...

http://en.wikipedia.org/wiki/Wheatberry
Click to expand...

Now ya'll just slap me senseless! I thought a wheatberry was an 'americanism' for something like a lingonberry or something! (lingonberries are great on belgiun waffles...but not if you have OUR problem!) :yrolleyes:

Not a point of contention Cindy....You can slap me Stan and Ollie any time we get outta line!
 
Thank you for this post. Im newly diagnosed with Crohns and am still recovering from an emergency op to remove an abscess. Being diagnosed meant I went through the usual feelings of fear and unfamiliarity but your attitude inspires me and makes me realise that I can cope with this condition. Hopefully it will be beginning of a more positive me! :)

Wishing you a speedy recovery hun :)

Becky x
 
that's really nice of you to say Becky, aww i know how hard it can be and spent a long time being upset, resentful, jealous and 'why me?', the only way i stop myself from going loopy is to be positive.
That's a pretty scary way to begin your crohn's journey, i hope you're feeling better soon. remember to ask whatever you like, your fellow crohnies are here for you.

:) hannah.x
 
I totally agree with the positive attitude Hannah. I think if you let everything get ontop of you you can go into complete meltdown and then things always seem worse. Your being very brave and it will serve to help your health also :)

Yeah the sudden operation and Crohns diagnosis was a complete shock and possibly an extreme way to begin my Crohns journey. I was only diagnosed this June (after the op) and they even initially discussed stoma bags with me. There was a possibility I would get one as I needed a second op to remove a surgical infection, and they said that if the leak was coming from my bowel then I'd need a bag. It was alot to take in so suddenly and I was very upset. I havent ended up with a bag as it did turn out to be a wound infecton but I now realise that I'd be able to cope with that eventuality in the future. But first I just need to get used to having Crohns - even that is a big change. How are you coping with your illeostomy? Hope your feeling fab and looking forward to getting back to normal.

Im still currently off work as my open wound will take months to heal and cant work till its fully better. Daytime TV overload! hehe

By the way, Im just wondering whether anyone noticed increased hair shedding after surgery?? Heard that can happen a few months later and the amount of hairs I have shed have recently increased. Not on any Meds yet either so cant be side effects from them. Luckily I have a thick head of hair but no female wants to be seeing the amount that leave her head increase hehe :) Any advice would be appreciated. Always makes you feel better when you hear that other people are ok when they face the same things

Hope your having a lovely healthy day Hannah

Becky x
 
i definatley lost hair but more so before surgery, i think it was due to the weight loss, practically as soon as i was allowed to, i began stuffing my face and putting on weight so it has now stopped, have you lost a lot of weight?

i'm coping with the ileostomy well, its been 4 and a half weeks, i was explaining to family that having the stoma didn't freak me out, even when i first saw it, because its a part of my body, i felt more funny about the tube drain that was in my side because it's a foreign thing.

i was pleasantly surprised with how the bags look, its just like wearing a big plaster really. i get upset the odd time and when i see anyone on tv showing their tummy i feel a bit 'funny' for a split second but other than that all is well lol. i'm just dying to get out now!

do you know which part of your intestine is affected? i hope you recover soon, and you find a treatment that works for you, there are plenty to try.

:) hannah.x
 
Hello Hannah,

Sorry for the late reply. I did lose a bit of weight after my surgery since I couldnt eat for 8 days as I couldnt stop being sick and had to give solids a rest for a while. My appetite disappeared for a long time as well. I think the wound infection was the main culprit since as soon as the antibiotics had got the better of it I went starving :) Was stuffing my face also! hehe :) We deserve it though eh. Im not on any meds so I reckon that the hair loss is due to the stress of the surgeries themselves and the fact I have low ferum serritin stores. Taking my supplements though so hopefully I see a decrease in the shedding soon. Seems so vain to worry about your hair but it just feels like an intrinsic part of being a women doesnt it. Sometimes I wish I was a man or a dog! hehe But then again, there will always be something to fret about wont there. I reckon my dog only worries about her next walk or meal though :) Easy life! hehe

Glad that your pleasantly surprised by the bag. Ive heard that they are very discreet and not visible under your clothing :) are you finding you can pretty much wear what you want? You look lovely on your photo so im sure your pretty clued up when it comes to fashion etc :) Your bound to have the odd moment where seeing stomachs on TV make you feel a tad sad. Its normal. Some people find it difficult to cope with a scar but you have had a lifestyle change. Bet your glad to have rid of the pains though. Your being very brave! :) When can you get out and about?

The part of my intestine affected is the terminal illeum in the small bowel. Had a CT scan and the gastroenterologists said they couldnt see any active crohns anywhere else apart from that spot where I'd had the resection. Im unsure whether that means its still there or it was there before the op. Have an appointment soon with the specialist so hopefully that'll clear the whole thing up for me. This is all new :)

When you can give us a message back to let me know how you are hun

Becky xx
 
Glad all is well, i use those eakins rings. Much bigger and yes they really help the skin. My stoma is just a baby only 19mm. The stoma nurse says its pretty small. But those rings and yes the powder too really help for irritation. Get yourself some ,they cost more but r really worth it. Good luck as you proceed on and keep moving forward. My 2nd surgery was Aug 2nd and i am starting to come around finally. Didnt think i would get here and in a mths time i will b even healthier. Rest also. Best thing for healing. Take care.
 
OMG....19mm?? Mine's 45mm..he's a monster!! Farts like one too....lol
 
19mm and 45mm???? mine is in the middle at 30mm.
i've switched from coloplast to dansac and i think its helped the itchiness a bit though i noticed a little granuloma just where the stoma joins the skin, is this ok to leave or do i need to contact the stoma nurse?

cecilia lynn, glad you are recovering quickly, how long have you had your stoma now?

thanks becky, yeah i can wear what i want, even with the tightest clothes you can't see it. i'm takin short shopping trips etc at the minute, can't walk round for hours or anything but i'm slowly getting my strength back each time i go out.
that's good, hopefully the resection got rid of all the active crohn's that was there and you get some peace from it! it was pretty much the same idea with my surgery, my large intestine contained active disease so they removed it all, i've never had crohn's in the small intestine so we're just hoping it doesn't return...and you definatley don't sound vain, your hair is your hair! anyone would feel the same!
 
hi yes 19mm just a little one, doesnt make a lot of noise but there are times i say "exuse me" lol. havnt gone to a mall just yet, still too tired for that. But finally i can rest on my side. Its been since aug 2nd since my last surgery. Have had the stoma since July 20th.
 

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