Operation - when you wish you had never done it.

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Ari

Ari

Joined
Jan 20, 2011
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362
I'll appreciate every answer to this post. :)

I'm going for my surgery in a few days and have been wondering whether it's really necessary or not. Once a part of your bowel is out it is out forever, right? I've been also wondering how many of you had an operation and wish you had never done it and why?

Thanks:grr1d:
 
I can't give you any advice regarding this, but I do wish you the best. I hope that your surgery is successful and that you find relief from your suffering, symptoms, and pain.
 
Thanks. More than likely it will be a combination of resection and strictureplasty. The surgeon also mentioned balloon distention as one of the options depending on the length of my strictures. I think I'm just getting the jitters :ybatty:
 
I know it's easy to say, as I'm not the one having the operation. Maybe this will put things in perspective. My grandfather (my father's father) had terrible CD. He went much of his adult life without medical care for his condition, as well as minimal care. Back in the 40s, 50s, and even 60s, who know much about IBD? He was a tough fisherman to boot, he had no time to be sick. My father who can be an ornery cuss that shows very little in the way of emotions, was troubled over his father's condition. He said it really bothered him to see his father throw-up while they were fishing. Keep in mind that it wasn't related to seasickness, as grandpa had fished in 20 foot waves, and did fine. Dad said grandpa always blamed it on what he had eaten, but my dad thought, "Who gets sick all the time? There's something wrong."

When things got really bad when he was older, the doctor said his intestines were ulcerated and they wanted to a strictureplasty. I think he had the procedure in 1979, I'm not too sure though. When he went in for the operation, they noticed a skip pattern which is typical in CD. The doctor decided to scrap the idea of the strictureplasty because he intestines were even worse than when they were originally evaluated. The surgeon did a total colectomy and removed part of his illeum. He was older, but he still handled the major surgery quite well. He didn't have any complications, and adjusted to wearing a colostomy bag. That was in the late 70s when technology wasn't as great as it is now. My grandpa lived for almost 30 more years after the procedure. He didn't have all the pain and suffering that he endured for much of his adult life. In fact when he died at the age of 87, it wasn't even Crohns related.

I think surgery is scary, but I do think we live in the best of times to have it done. I've had other types of surgeries, and when I get scared, I try to remember that many people have been through it, and under worse conditions. I will pray that things go well and that you have peace in your mind and heart.
 
I know I don't regret having my surgery done. I only had a little less than a foot taken out of my TI but it was a rough recovery and did get infected making the recovery time last much longer. Even with the complications after, I'd do it again in a heartbeat because I've been in remission ever since and my surgery was over 10 years ago. Its common for people to go many years with no symptoms at all after surgery. Keeping on maintenance drugs is key to staying in remission though. One thing I've learned is that we'll never escape the meds. That's a minor thing compared to all the other stuff we've had to go through though. Good luck with your surgery. Its completely normal to be nervous.
 
My surgery is on Wednesday this coming week so it's only 3 days and I'll have a brand new scar all the way down my belly.:eek2: Bring it on. I don't think I can wait any longer.

Thanks for your prayers and well wishes. They mean a lot to me :hug:
 
good luck, I debated for ages wether I needed the surgery or not until the doc said he wouldn't take me off the steroids unless I had it so I had 1 ft of small intestine, ileo-cecal valve and a little larger intestine removed and I feel so much better now so really glad I had it done. I now don't take any meds and so far so good, it took me about 1 month to recover and now I'm pretty much normal. I still have to watch out for certain foods but thats about it at the mo. You'll be fine, wishing you a speedy recovery.
 
Besta Luck to you Ari!
I've not had Crohn's surgery, yet! But I can relate to the doubtfulness, I felt like that before my hysterectomy, turns out to be the best decision I've ever made, no regrets.
The jitters is normal, try and chillax!
xxx
 
Although mine wasnt planned, im glad i had it. My crohns symptoms have been really bad since and the recovery is taking time BUT.. ultimately i know my body is better for it, i.e theyve removed the diseased section and ive had more tests recently than i can remember, so going forward hopefully i can get the right treatment.

Hope it goes well dude!
 
I dont talk about my surgeries too much, as this is a support forum, and nobody really wants to hear the horrors of surgery. Mine were very traumatic, from the 8 hours I spent in the ER before being admitted, through the first surgery, then the massive internal bleeding, to the 6 days I spent in the ICU after the second surgery, and for a total of 19 days, until I left the hospital. For me, the entire hospital experience was hellacious! So much went wrong! I had panic attacks ALL the way through the experience. I was hallucinating-it was insane-o! The pain was overwhelming at times. Dilaudid became my best friend(the only good thing about the surgeries).

But...

I was soooo sick before the surgeries. I was absolutely miserable. It was unbearable. Even though I had a horrid experience, I am so happy that I went through it! Looking at my situation from the other side, I am so much better off! While surgery didn't give me a long reprieve (surgeries were in Feb '07, was back in the hospital in Sept '07), it certainly helped by dropping my Crohn's from what was a severe case to what I think of as a moderate case(gastro said it would be helpful to try and judge it from a healthy persons point of view, meaning my case is still close to severe. I said I have no frame of reference). I am not in the bathroom 24-7. I still lose blood, but so far a lot less. The pain can be intense, but it is not all day, every day anymore. I still have flares, and Humira did quit working for me 2 years after my surgeries, but over all- I am so much better! That traumatic experience paid off, in the end!

Good luck with your surgery!:)
 
Thanks for that chaps. :) Seems like I've been in this flare since the last ice age or summit with no end in sight. I really need an operation...:yrolleyes:
 
Ari, I had surgery on the night of the 22nd of Dec. I was TERRIFIED!!!!! I've never had ANY surgery before. Let alone major. The recovery has been tough, especially with infections. But still, I'm glad I had it done or perhaps I wouldnt be typing this now, I'd probably be dead. After you've had your surgery, look forward, not back. You will begin to feel better and that's going to make a huge difference to you! Good luck and keep us posted!
Misty
 
Ari,
Good luck! It WILL work for you! Surgery is scary, no matter how much we need it done. Go, get it done. The pain will suck but for a limited time. Then, it will be GREAT again for you! Hey, they give good pain meds. Better living through chemistry!
Michele
 
Good luck Ari! Waiting for surgery is the worst - too much time to think about it!!!

I hope all goes well - you'll be feeling so much better after your recovery you'll wonder why you ever doubted it!

- Amy
 
Thank you ever so much for your support guys. :rosette2:Time to start packing my little case and for the love of God I really don't know what to take with me. :runaway: I'm thinking a pillow to hug after the op would be good, my pjs, lots of spare underwear and my laptop of course, couldn't live without it btw, and some dosh - 80 quid should do I think. I'm flying out at 10.20 tomorrow and it's a 40 minute flight to Gatwick and a looooong travel from there to Harrow... :yfaint:
 
Ari, your own ROBE! Slippers, good reading material, bath stuff, you WONT like their soap, and they dont have shampoo either generally. Warm comfy socks. Toothbrush, toothpaste, deoderant, clean underwear (do we have any?? LOL) Your debit card (the TV people take debit cards it's usually 3 to 5 quid a day) And believe it or not, stuff you like to snack on. You'll be able to eat a few days after surgery and you wont like their food generally, so take something you like to munch on that wont irritate your bowels! (I devoured shortbread for instance, but I would've killed for cheese and crackers)

We will be thinking of you, and keep us posted as you can! Good luck Ari!!!

Best,
Misty
 
For years when surgery was even mentioned to me I just didn't want to know! Then finally about 11 months ago I didn't get a choice in the matter when they found an abscess on my Colon ready to burst! I was in the Operating Theatre an hour later having my Colon Removed (it was far to diseased to do anything with) and a Stoma Created. before the Operation this was my worst nightmare! But now I've had it done... I wish I had done it sooner! I've never felt better!

Good Luck! You Will Be Fine!
 
1st Surgery

Hi - I just had my first surgery 2/9/11. I am home recovering but I am feeling so much better than I have in the past 6 months. Surgery won't be bad cuz your asleep. It's the waking up part. But they wll give you stuff from for the pain and hopefully you'll be better for a long time afterwards. Good luck!!:goodluck:
 
Terriernut said:
Ari, your own ROBE! Slippers, good reading material, bath stuff, (...) And believe it or not, stuff you like to snack on. You'll be able to eat a few days after surgery and you wont like their food generally, so take something you like to munch on that wont irritate your bowels! (...)

We will be thinking of you, and keep us posted as you can! Good luck Ari!!!

Best,
Misty
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Thanks for that Misty. I'll take my debit card as well as some munchies with me. I'll run to the co-op down the road and get them first thing when they open at half seven.

girlygirl said:
Good luck Ari! hope all goes well for you
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MADiMarc said:
Good luck! Misty is right about the snacks. Hospital food sucks.
Michele
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archie said:
good luck you'll be fine back on the forum before you know it!!
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Rob.G said:
For years when surgery was even mentioned to me I just didn't want to know! Then finally about 11 months ago I didn't get a choice in the matter when they found an abscess on my Colon ready to burst! I was in the Operating Theatre an hour later having my Colon Removed (it was far to diseased to do anything with) and a Stoma Created. before the Operation this was my worst nightmare! But now I've had it done... I wish I had done it sooner! I've never felt better!

Good Luck! You Will Be Fine!
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katiebel said:
Hi - I just had my first surgery 2/9/11. I am home recovering but I am feeling so much better than I have in the past 6 months. Surgery won't be bad cuz your asleep. It's the waking up part. But they wll give you stuff from for the pain and hopefully you'll be better for a long time afterwards. Good luck!!:goodluck:
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Astra101 said:
Besta Luck to you Ari!
I've not had Crohn's surgery, yet! But I can relate to the doubtfulness, I felt like that before my hysterectomy, turns out to be the best decision I've ever made, no regrets.
The jitters is normal, try and chillax!
xxx
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AndiGirl said:
(...) I will pray that things go well and that you have peace in your mind and heart.
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Nytefyre said:
(...) Good luck with your surgery!:)
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Thanks you all very much for your wishes. I'll let you know how it went as soon as I can walk. Now's the time to go and have my last shower and double check whether I've packed everything I need. Thanks again for your support. You are all fantastic. BIiiiiiiiiiiiiiiiiiiiiiG Hugs :hug:
 
Hi Ari,

I wish you all the luck in the world with your surgery and hope you have a speedy recovery.

I have not had surgery myself but my daughter has and it is looming for son also.

In my daughters case it was an emergency, she was undiagnosed, and it saved her life. She was left with short bowel syndrome BUT she has been in remission since that time and it is now approaching 5 years.

My son has recently been diagnosed and will very likely require surgery in the next couple of months. At the beginning I hoped more than anything he would avoid needing surgery for a very long to come but it has not panned out that way. Watching him these last three months treading water and at times going under has been so heartbreaking and difficult that I now welcome surgery. I guess I see the positive outcomes that my daughter has had and wish that for my son as well.

My daughters journey was very different to Matt's. She was ill for a long time and we didn't know what it was, then all of a sudden.......emergency op, diagnosis, remission. You know at the outset of this journey with my son I had many fears, Prednisone was replaced Humira which was replaced by abscesses which was replaced by fistulas which was replaced by increasing inflammation and on it goes. It's crazy what I now wish for and for which I have little fear and that is surgery to get rid all the crap that is in there so he has some chance of moving on.

I will be thinking about you. Good luck mate. :hug:
Dusty
 
:well: It's Wednesday, 12.30pm, I'm in hospital and will be going to the theatre any time now. I pray everything goes well. Wish me luck. :arghmatey_ani: :yrolleyes:
 
hopefully you're not still waiting right now, and things are going smoothly.... thinking of you - sending hugs and good recovery wishes down the M1 as i type ;)

let us know how you are when you're able.
 
Ari,
Hope all is well & you are on the way to an easy recovery. Sending all good thoughs, wishes and very gentle hugs your way.
Michele
 
hope it went well, take all the drugs going and walk walk and walk... at least you can get the internet to keep you entertained!!! your prob in recovery now sending hugs
 
Ari,
You have been on my mind all day. I am hoping you are doing well & you are taking all the pain meds as directed. I will post you a short message every day. My way of being there for you.
Michele. :ghug: :ghug:
 
MADiMarc said:
Ari,
You have been on my mind all day. I am hoping you are doing well & you are taking all the pain meds as directed. I will post you a short message every day. My way of being there for you.
Michele. :ghug: :ghug:
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Good idea Michele!

Hope all is going well, Ari!:cool:
 
Ari, hope you are doing OK after surgery? You are probably in the 'morphine zone' right now. Wishing you well!!! :hug:

Misty
 
Hi guys. It's been 24 hours since I opened my eyes in the recovery room.

I had a stricture which turned into a fistula growing from my ileum to my bladder and the right descending colon above my rectum. It also had it's teeth in my right urethra obstructing the flow of urine from the kidney above.

I didn't have nausea when I woke up, but a lot of pain...and yes, the bag. The surgeon did a resection of the colon, split the urethra and put a tube in it, cut the diseased part of the ileum out and left me with a stoma. My small bowel was the size of an average arm in diameter and my stoma looks huge. It is reversible and they want to do it in 6 months, some time in August I think.

I've been walking today, drinking and had some jelly (jello) and clear soup to eat which mostly came out through the NG tube.

The decision to cut was a life savior and I already feel a lot better for it. Now I'm waiting for the first gas, but will stay in hospital for two weeks anyway because of the urethra as the surgeon doesn't want me to use my muscles to pee.

I've got a morphine pump and am on top of my pain. I know it'll hurt more in the morning, but, hell, it's nothing compared to what I've been through thanks to this sh**ty disease.

Thanks for all your prayers and well wishes. Will keep you posted. I love you all. Me

:kiss::hug::kiss::hug::Karl:
 
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awww! it's so lovely to get such a quick report from you, and to hear you're more or less ok, but i'm sorry there were those complications - i guess unexpected...

just take it easy, be a good boy & do as the nurses tell you :D and hopefully the next few days will see you feeling tons better, more mobile, and less reliant on the pain meds.
 
Ari, glad you are on top of the pain! Love that morphine button! Stay possitive. You'll feel better after the surgery. And the bags temp like mine, you will get thru this with flying colours. Keep us posted and know you're in our thoughts! Come visit us on the stoma side of this forum sometime, I think they are all proper nutters, but wow do they have good advice! (that has helped me immensely)
Misty
 
I promise to write some more tomorrow. You are all fantastic. Words cannot describe how I feel right now reading through all the posts you have left for me. :hug: :hug: :hug:
 
lseibert said:
Ari,

I'm glad to see your surgery went well, I'm going in tomorrow for my surgery!

Wishing you a fast recovery....:hug:
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Hey!! I just caught this! Wow surgery tomorrow, what kind and where? Sorry, been AWOL for awhile. :goodluck: And hope all goes well and you are heading for a great future, pain free!:hug:
 
Ari said:
I promise to write some more tomorrow. You are all fantastic. Words cannot describe how I feel right now reading through all the posts you have left for me. :hug: :hug: :hug:
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Sorry I missed this, but just think how much better you are going to feel! I have had two resections but no bag. When the doctor says rest, he/she means it! I have seen so many try to much too fast and sets them back. Enjoy your rest and sleep, you will heal much faster! Glad you are ok!:D
 
Pen said:
Hey!! I just caught this! Wow surgery tomorrow, what kind and where? Sorry, been AWOL for awhile. :goodluck: And hope all goes well and you are heading for a great future, pain free!:hug:
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I been AWOL myself, Thanks Pen, for remembering me. :hug:
I hope all goes well also, and I would love to be pain free.

:Karl:
 
Hi Ari! I am so happy for you! My mom just flew in yesterday so I have not had time to check on you but I have been keeping you in my thoughts. Hey, keep the morphine pump as long as possible. Better living through chemistry!
Michele :)
 
I had a few problems posting last night, but I hope this one gets there ok this time. :thumleft:

First things first, Andigirl thank you very much for your prayers, big hugs to you as well as Dingbat, Pen, Misty, NyteFyre, Dusty, Michelle (for thinking of me every day), Stephanie, Alice, Linda, Jennjenn, and all ye crohnies out there. You mean so much to me. :kiss:

Been walking a lot today and..yes, yes, yes, I’ve had my first BM from the stoma. Yippee.

@ Linda – good luck with your surgery. I’ll be thinking of you. Hope all goes well for you hun. :shifty-t:

@NyteFyre - I'll look into the buddy thing as soon as I'm out of the woozy zone.

dingbat said:
awww! it's so lovely to get such a quick report from you, and to hear you're more or less ok, but i'm sorry there were those complications - i guess unexpected... .
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It seems normal to put people in ICU right after surgery over here. Mine was extensive and there’s a lot more nurses looking after you there than there's on the ward. I think that was the only reason for it really. I stayed in it for 3-4 hours after the op.

Terriernut said:
Ari, glad you are on top of the pain! (…) Come visit us on the stoma side of this forum sometime, I think they are all proper nutters, but wow do they have good advice! (that has helped me immensely)
Misty
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I swear I will. I’ll probably lurk around and read a lot to start, but will try and add my 2 cents to it as well. I hope. Besides, it would be rude to miss that really.

MADiMarc said:
Ari,
You have been on my mind all day. I am hoping you are doing well & you are taking all the pain meds as directed. I will post you a short message every day. My way of being there for you.
Michele. :ghug: :ghug:
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There’s so much love in all of us and even if we can’t heal this disease we can be there for each other in all sorts of ways. Thanks for that Michelle

All in all, it was a good day full of people coming and going, very busy and I can definitely say I’m getting better and better, but I don’t wanna push it too far and end up with complications.

BIG HUGS to all of you guys out there and a BIG THANK YOU for all your support.

:hug: :hug: :hug:
 
That's terrific! You are doing the right thing by taking it easy. I'm glad you are feeling good, if not sore.
 
AndiGirl said:
That's terrific! You are doing the right thing by taking it easy. I'm glad you are feeling good, if not sore.
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o
I left you a quick VM. I'm using the morphine pump, but have a really hard time when I cough. I can also feel that plastic tube in my uretha, ouch.

But, hey, if this is what you get after then it really surprises me how much pain and misery I was in before the surgery. Now, isn't it time to go to bed in Alaska :) Thanks for all your prayers. You are an angel and so is everyone else on this forum :kiss:
 
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hi Ari - good to hear your stomie has performed! :D

that pain you're feeling on coughing - it's absolutely normal after abdo surgery.. it also hurts when you sneeze.. try having a spare pillow or cushion to hand, and if you feel you need to cough or sneeze, place the cushion firmly across your tummy and hug it with your arms, also bringing your knees up a little helps..

you're doing great by the sounds of things, keep it up! :)


oh - and have a look in here ;) http://www.crohnsforum.com/showthread.php?p=266098#post266098
 
Hi, Ari! I hope things are a bit better today pain wise. I am glad you are not in Houston my friend, the pollen is so high, everyone is sneezing like crazy!
Michele
 
Ari said:
I'm using the morphine pump, but have a really hard time when I cough.

Yeah, I can relate! Laughing is a bugger too! I remember the nurses were telling me to cough...I wanted to slap them! But the pillow over your abdomen does really help when you cough. Or laugh!

Hope you are doing well today...dont forget to walk if you can. It was easy for me after they unhooked me from all the drips....I had to sneak a crafty fag. Certainly helped me with the walking bit! (I'm a very, very naughty patient)

Misty
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well done for coming through it, sorry to hear about your complications but glad that you feel a bit better already... onwards and upwards put your feet up and chillax.
 
Quick update. Them buggers took my morphine pump away :ybatty: I've been put on tramadol and paracetamol (acetaminophen ), and dear me :eek: the combo seems to be working even better than the morphine itself.

Terriernut said:
(…) I remember the nurses were telling me to cough...I wanted to slap them! (...)
Misty
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That's exactly how I felt. They came and said I needed to coughit up to avoid lung infection or summit. Well, I tried, not very hard, but I tried.

archie said:
well done for coming through it, sorry to hear about your complications but glad that you feel a bit better already... onwards and upwards put your feet up and chillax.
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Thanks Alice :) Chill, listen to the radio, watch telly, some downloads or read. Yeah, that's the plan and I'm doing my damnest to go by it. :shifty-t:

MADiMarc said:
Hi, Ari! I hope things are a bit better today pain wise. I am glad you are not in Houston my friend, the pollen is so high, everyone is sneezing like crazy!
Michele
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Yeah, Michele, things are a lot better. I really don't know what kind of magic did my surgeon perform, but her hands are worth sh*t loads of money to me...and her brain even more. :medal1:

dingbat said:
hi Ari - good to hear your stomie has performed! :D

that pain you're feeling on coughing - it's absolutely normal after abdo surgery.. it also hurts when you sneeze.. try having a spare pillow or cushion to hand, and if you feel you need to cough or sneeze, place the cushion firmly across your tummy and hug it with your arms, also bringing your knees up a little helps..

you're doing great by the sounds of things, keep it up! :)


oh - and have a look in here ;) http://www.crohnsforum.com/showthread.php?p=266098#post266098
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Yes, we can be here for all of us and help as much as we can...Thanks for spotting that. I was overwhelmed by the amount of love coming from all the posts you guys had left for me...still am.

Day 3 and I don't feel like coughing anymore. :) Will I live? hm.let me think. ...I'll keep you posted :sun:
 
I couldn't cough for about 3 weeks and i'm a physio!! taste of my own medicine really for making all those poor patients cough / walk / breathe post surgery... and i only had a 4" scar!!! I loved the drugs especially the ones that make you think your on another planet... enjoy!
 
Hi, Ari! I am glad you are doing well & that they are giving you what you need for pain & stuff. I know coughing hurts buddy, but it really does help with post operative pneumonia. Just try, okay?
Michele
 
hi ari, im glad you came throught safely and hopefully everything heals up fast and you get to go home in your bed soon..
 
I am glad that you are doing ok! I hope that things continue to improve and go according to plan so that you can go home soon :)
 
Hi good luck to you, I had a resection in 99 and then more taken out in 09 I have to say I dont regret it because if I hadnt I wouldnt be here, however, the one in 99 didnt take any of the pain away and at the time I was only 24 and thought that that would be it I would be disease free, how wrong I was, but seriously everyone is different and every surgery is too and you can only hope for the best!
 
Hi guys,

Just a quick one. I had a rather depressing day yesterday with something blocking the flow of urine through the catheter tube inside. I had to push really hard to for it to literally shoot through and open up the flow. Jesus, Mary and Joseph, did it hurt, but it's running now. :cheerss: to that!!!

General mood sucks, but it's day 5 so I can afford some post op depression, right? Oh, and the drain is coming out today, so that's good and maybe it'll brighten up my day.:ybatty:

Things can get better and they will. I hope :kello:
 
I was well grumpy on day 5 as well Ari. I think its normal to get that way after a stay in hospital, and all the crap you are going thru. Things WILL get better!!
Misty
 
Hey, Ari. Yeah the post op depression is normal though it really does not help to be told that, huh? Do the best you can and then think hey tomorrow is another day and it will be better.
Here's to peeing freely! ;)
Michele
 
I would agree that the post op depression is normal. I've had five surgeries (again, not related to Crohns) but I got very sad and cranky after one in particular. My nurse and my father both thought it was the morphine. My dad had two knee replacements. He will take painkillers, but not morphine. He claims that it made him very paranoid, fearful, and angry. I went off the morphine and tried something else. It wasn't as bad when I was on another pain killer.
 
I found this on-line. I hope it helps Ari.

I don't have much advice on how to deal with the depression. Here is my short list:

Know what is coming.
Warn your support system.
Know that it is not permanent.
Try to get outside. Sunshine helps.
Healing physically is the primary concern. Don't screw up the work you had done.
Talk to people who have been through it.
Make no rash decisions. Everything major can wait at least 3 days.
 
Excellent advice! I'd give it more than 3 days to make a major decision though! (I mean after a major surgury that is)
Misty
 
Terriernut said:
Excellent advice! I'd give it more than 3 days to make a major decision though! (I mean after a major surgury that is)
Misty
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I agree! Ari if you are planning on getting married, changing careers, moving, then you better think it over for more than three days. LOL!
 
Yup! But what we really need to know is.....how long does it REALLY take to get all those drugs out of our system?? (god bless the 60's and 70's...sigh LOL!!)
Misty
 
Yeah, no marrying one of the cute young nurses...or doctors for that matter, until it has been thoroughly discussed here!
On the serious side, hope it is better today, buddy. I wish I could send you some sunshine (along with Andi's) but virtual hugs will have to do!
Michele :hug: :hug: :hug:
 
Hi guys. It is so nice to see you are concerned and to read all of your good advice fills my heart with some hope. Things have got slightly worse since my last visit over here. I'm running a low grade temp and oozing some kind of milky stuff from my drain. They want to swab that for cultures and, if needed, use some antibiotics for it. The level of care is pretty good but you won't get anything unless you ask for it. My stoma bag burns my skin, the drain one is no better for it and even the wound dressing is bugging me like hell.

I'm sorry for not being all upbeat and positive about it. I'll write when I'm a little better.

Love you all. me
 
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Dont let infection take hold, ask for very strong antibiotics now. As for the adhesive bothering your skin, make sure to bring it to the stoma nurses attention immediately, and make them give you something for it. I KNOW, when you are in hospital, you have to advocate for yourself or you've had it! Keep fighting Ari! Dont take no for an answer.
Misty
 
Hey Ari, I don't believe we've "met" before, as I haven't posted here in a few years. I was just reading through the posts here and wanted to say that I hope things improve soon. Glad to hear you came through surgery ok and with a very positive attitude I might add. I think everything you are going through and experiencing is quite normal and thank God for hope! Hope will see you through it all and you are definitely in good company here. I wish you the best with the irritation your stoma is causing and the "milky substance" I agree with Terriernut, you have to be your own advocate sometimes and really push for them to stay on top of things. Hopefully you have someone there with you to help you out as well.

Thoughts-and-prayers are with you!
 
Thanks for that Misty. :thumleft: It's been a bit of a roller coaster with its usual ups and downs for me here. I felt like crap in the morning, but later one of them hospital GIs came over to see me and that made a difference. He decided to put me on flagyl right away and suggested morphine on the side (if and when needed) to help control my aches and twinges. We discussed the follow up with the pill cam endosc. soon after my discharge. :yfaint:

They flushed the catheter which brought a lot of relief and now I'm nearly pain free. Touch wood *he slaps his forehead*

All things considered I had a bit of a set back with urine dripping out from my bladder, but judging by the size of my stoma (there won't be any pictures...sorry :ybatty:) and how it's gone down I think I'm on the way to recovery. The general feeling of being unwell is normal after a biggie like that and I think I'm just being too hard on myself expecting miracles from day 1. :headbang:

My eyes are shutting again. I just don't know what to do about this blooming fatigue. They took my blood in the morning and if I'm low in iron or anything they'll give it to me...hopefully :eek:utahere:

You guys take care of yourselves. I'll pop round later.

Me :hug:
 
Thanks Tami Lynn. Every word of support goes a long way when one really needs it.

All of you guys are like Guardian Angels and words will never be enough to describe how I feel about being part of such wonderful community. I'll keep you posted.

Me
 
hey Ari.. just been reading your updates. don't worry, it's completely normal to have ups and downs in the first few days after surgery... i know my physical and my emotional states went all over the place, every time.. and the fatigue is normal too - your body has been through a hell of a shock, and sleeping is healing - so just take little naps when you feel like it, and try not to worry. sounds like everything is being addressed, and the little hiccups are just that - little.

re the stoma bag stinging.. make sure that whoever is changing the appliance for you is doing so correctly.. if you can, ask for the stoma nurse herself to do it. when the first bag is put on, your stoma is swollen... as it shrinks, that same bag will no longer fit properly around the base of the stoma, (causing soreness) so it needs changing and a smaller apperture appliance found.. this shrinkage may carry on for a while, so be alert to that...
 
I went to the doctors office on a friday and the doctor told me about half way through the visit she wanted to go ahead with having the surgery. I was so confused at the time and didn't know what to think. I broke down right there and I didn't care. I had my surgery that following monday. Going into surgery I just thought about different things and my family. I didn't think about the surgery at all which I think helped A LOT. They had me on major pain medicene which made me really sick and dizzy. I made them stop it and put me on another one. By the time I got out I had so many bruises on my arm it was nasty. The main thing to do is be careful getting in and out of bed and walking. You will drink lots of water for some time because of the medicene. The other thing you need to make sure to do is keep your head up because people that have stomach surgery are prone to wanting to keep their head down which is not good for your stomach. Best of luck.
 
Oh, and I forgot, about 3 days after I did get an infection which is not uncommon because it is such a big cut/scar. My mom had to stuff that with things that had a solution on it to help clean it and it healed on it's on. I think that was the hardest part. My doctor said the surgery was worse than a c-section.
 
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I agree I walked bent over for about a week not so good for the back i'm afraid... Ari you need to cap nap to heal just drift off and don't fight it. I really hope you get your stoma and drain sites sorted soon. All these aches and pains after surgery are quite normal and you think you'll never be pain free again, but you will it's early early days. Lie back and let people fuss over you. Hope the next couple of days are better and that you get off the flagyl soon it's rotten!!!
 
Quick update. There's a few e-coli growing in my UT, so there will be some more antibiotics to take. I think I heard them mention Augmentin somewhere along the way. In general I am better and the docs said that if I'd lived somewhere local they would've let me go home today.

Being stuck in hospital really does put your condition in perspective. Over the past 7 days we've had people die (terminal cancer) and suffer from Crohn's like I have never suffered, meaning a completely different type of CD, but there are a lot of people with horror stories I could sign my name under and claim they have happened to me too.

Best to stay away from those institutions ...I think
 
Hey, buddy! Keep after the docs & on the infection. I know, I hate hospitals too. Depressing just to say the word but when we need to be there, we need to be there! I have never needed a surgery for CD stuff, just other hunk a' junk. The ups & downs make you think your nuts! You aren't but darned if it doesn't feel like it, huh?

Take care of you we need you around here!
Michele
 
Hey ari, hold your head up, I know it's hard when your stuck somewhere your not wanting to be it's hard to keep your spirit up.. I'm praying for you and everyone on this board everyday.. Praying for a quick healing of your stoma and healing for your body..
 
I have had 1 surgery that was a emergency/not planned LOL. Went in on Christmas day with a perforation. They thought my appendix burst..and surprise it was crohns complication. The military told me for months it was just constipation instead of sending me to a specialist. Spent two months in a army hospital..and it was hell. I lost 30 pounds and at 6' 1" and 150 i didn't have 30 pounds to loose LOL. Now that was my experience at the hands of incompetent retards. I am due for another relatively soon according to my current docs (civilians thank god) and i hear its a real easy 3 day in and out if all goes well. I am not worried about this one and neither should you. Best advice i can give you is remember it ALWAYS gets better. I let the mess get me down to a point that i almost didn't want to live anymore...and i fortunately had a great Father and Chief that helped me through it. You need to honestly believe and know for a fact it "aka life" Always gets better. You just have to kick and fight your way though the shitty parts. Good Luck my friend and be strong--positive mental attitude heals more then medicine.
 
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Best of luck, I hope you will have a fast recovery! I am sorry for your current troubles, hopefully they will go away!<3

kisses,Aya
 
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I hope you are talking it easy buddy. We miss you and are wishing you the best. :)
 
Hey, Ari. I hope today is (was?) better for you & that you are on the mend. Andi is right, we miss you around here!
Okay, you may not feel like posting, I so get that. Let me give you some newsy type stuff that you can read or ignore at your leisure!
Going to take my mom for her message, plant some spring plants, go to the mall (yuck) to get my moms hair cut so she will no longer resemble Don King, buy her a new dress because she will not pay the prices listed (she would walk around bare-assed, not a pretty sight), get the car cleaned, go grocery shopping, clean the refrigerator out (I think I have some science experiments in there) and then make myself beautiful (HA) and go out to dinner with mom, hubby & some friends from the UK.
Can I have some of your pain killers??? :D
:getwell:
Michele
 
Hi guys,

First things first, Michele and Andi thanks for keeping my spirits up. You are wonderful.

Yes, I really feel bad abt not posting , but tht’s all to do with yet another setback I suffered perhaps 3-4 days ago.
I woke up in the morning around seven and looked outside and the sun was shining, so that put in the singing mood, but a few minutes later I started getting that horrible, acute pain to the right of my stoma anytime my gut felt like moving some of the contents forward…
I know what yr thinkin. GAS. Well, it's not. I can pass it alright, but I do carry the catheter around due to the bladder damage/fix and have had nothing but trouble with it constantly obstructing, and later it even gave me uti which they are treating with iv augmentin. So to me that’s nothing but devil’s work, as it was meant to stop me from using my muscles, and I have used them more strongly than ever due to the burning sensation in my pride and joy.

Can it be that the end bit of the catheter is irritating the bladder and when the bowels are moving it simply gets in the way? Or is all to do with the stitches inside and adhesions?
This kind of pain can put you off eating for life. I mean it’s just fekin scary.

You all take care of yourselves

Me
 
Blimey Ari, you are going thru it! I am relating the the UTI, cause I STILL have one that just wont go away. Painful! And with what else you are going thru holy crap. (hope that doesnt offend anyone)

What are the Dr's saying about all this trouble you are having? I think it would be a good idea to have the specialists involved...are they being helpful? You said you were in Harrow Hospital? Is that right, the one in Middlesex? You are a very long way from home! That must make it more difficult as well. Keep fighting Ari, and know this too shall pass. You must be very tired of feeling badly, bless you! I'm thinking of you!

Misty
 
Oh, ouch! Well that really sucks lemons! This pain stuff you are describing sounds just horrid! I don't have one of those and it makes me hurt down through the belly button in sympathy!
You get yourself well & the clock those doctors but good. Constant obstructions do not sound normal to me. Can't they fix that somehow?
You don't need to answer these questions. I know posting is difficult for you right now.
Take care of you & get better fast!
Michele
 
It's good to hear from you Ari. Please continue to take it easy. I can tell that your spirits have probably improved some. Keep looking to the sun and the good future ahead of you.
 
Thanks guys.

Just a quick update. My consultant came and said that my bloodwork had gone in the wrong dirrection as the white blood cell count was slightly elevated. I'm going to have an abdo scan of some sort in order to find out if there's no puss anywhere in my tummy. The catheter stays in until they are happy with the results of that and the pain is due to my bowels shrinking after not working properly for a long time.

that's what the doctors say...
 
Well, good morning. Okay, white blood cell count up is not great news but the CT scan is a good way to help track it down, right? I know it doesn't seem like it now but you will get better & you will get your life back!
All positive thoughts headed across the pond to you, my friend!
Michele
 

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