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SusanB

SusanB

Joined
Sep 26, 2012
Messages
50
Woke up this morning all upset about my reversal this coming Wed. I was doing so well!! Now I'm all scared and anxious!! Blah!!
 
Upset about the surgery itself or upset about life after reversal? Hang in there!!! We are here for you! :hug:
 
Thanks you two!! Just needed to hear everything would be ok :) I think I'm going to miss my little 'cherry tomato' and I can definately understand why people choose to keep it. Its never ever bothered me to have a stoma as I wouldn't be here otherwise. Whats probably bothering me the most, if I'm honest with myself, is just the hospital stay and the thought of pain. Which is silly because I'm always taken such good care of.
Thanks again for the support. I needed it. I will post on how it goes :)
 
Well, after having good success with your stoma, it is completely understandable to be concerned with the thought of pain and another hospital stay. Going into surgery to develop the stoma, I was counting down the days to be relieved of the problem and didn't mind the idea of dealing with a different kind of pain than what I was already having. However, now being pain-free and not glued to the toilet, the idea of any further surgery makes me cringe.

I'm so glad you are doing well enough to have your reversal. Hooray!! You should have a proper send off for your little cherry tomato. :)
 
I think you are going to be healthy enough to be just fine without your stoma. At least that is my wish for you! And that your recovery is smooth. Many folks report it was alot easier to be reversed than they thought. So, that IS what is going to happen to you!
 
Its 1am here and I can't sleep. I went out for dinner at The Keg for a last hurraa and had shrimp cocktail, New York Strip, baked potatoe and Choc cake (all for the first time in a year and a half!!)
Well now my stoma is spewing and air is just crazy!! Stomas getting sore.. I guess i'm paying for it now!!
Oh well, it was delicious :) !!!!! and worth it !
 
lol glad u enjoyed it though !
I hope your reversal goes well , I have my fingers crossed for u xx
jen xx
 
Susan i understand where your coming from, my reversal is now one month away. when i was sick i didnt mind the surgery meds and hospitals, now that i feel great im a little anxious and not sure what to expect
 
Has anyone whos had a reversal not had to fast or stop eating before hand? I thought it was kinda odd that I wasen't told to do so.
Let me know your thoughts...
 
I wouldn't be surprised to be told nothing other than no food after midnight. I know for me, everything passed out of my stoma at a fast rate.
 
generally they only make your fast from mid night if you have morning procedure / surgery which is more to do with the sedation rather than having empty bowels. if your in afternoon then from 7am is what i have done in the past
 
OK Thanks!
I just assumed that your bowels have to be empty, but your right, they do empty quite quickly! Tomorrow I go to the hospital and my surgery is sometime Wed morning.
 
They'll organise that once you are in the hospital - as others have said, probably only fast from 10pm or midnight.

I hope that things go well for you on Wednesday.
smiley_goodluck_yellow.gif
 
On my little blackberry and Very drugged so bear with me!! Lol

Surgery yesterday morning. All went well. He was able to go yhrew the stoma hole and not re-open my scar along my belly. He had to remove some scar tissue from under some muscle and join my large and small bowel togethe. I was, as usual in recovery for 3.5 hours trying to manage my pain as I have zero tolerance. Lol I'm currently on Dilaudid every 3 hours. Preds been upped to 80 and I'm blowing up like a balloon. Allso on flagyl and another anibiotc.

I'm ok :) I'll write more later when I'm more coherant and can see better lol
 
:thumright: Thank you for letting us know you are alright! Hope every hour gets better for you!
:getwell:
 
My eyes are soo bad, I can't see what I'm writting!
Day 3 of just ice chips. Dr is waiting for gas and mucus to pass. If not by tomorrow, he's using a supository. Blah
Not sleeping. I think I'm over tired. Wound area looks good! Still on lots of pain meds.
 
Not that suppositories are the worst of what you have been through already, but fingers crossed that won't be necessary. Big hug!!!!!
 
You need a rumble in the jungle! Tell them to give you some soup! I mean, it's got to help. You dont want a stinking suppository do you?
Hugs!!!!
 
No! I don't want a suppository at all. :( Feeling really crappy. The only air coming out is from my I stitches. I am walking a lot! I'm impressed with myself truckin' around on day two post surgery, but nothings moving.
Thanks you guys <3
 
I too have 'lazy bowels' after surgery. They usually just give in and feed me. Then I vomit. Then I eat later and the I'm off like a rocket. By eating, I mean soup and crackers. Although I DID eat xmas dinner in 2010 after my emergency surgery on the 22nd. Bowels didnt work until the 27th.

Sometimes eating a bit is the only thing that will work. Easy, light, soup. Give them the big eyes like Puss in Boots, works a treat!

Hun, your bowels will kick in..dont worry. Sorry you are experiencing pain, wish I could give you a big hug!
 
I'm in a lot of pain and I can't see what I'm writting because my phone is so small. I have really bad what I'm assuming is gas pains where they joined my bowel. Cry baby itis from pain. Just had some adavan and dilaudid. On liquids today but I think the dairy wasent a good idea. I had an Ensure too and a cup of tea but that's it. I hope tomorrow is better :(
Sorry, I'm upset
 
It's not crybabyitis.... gas pain really is bad!!! I hope you will be able to rest after the meds kick in.
 
Hello :). Its day 74 and I'm still in the hospital :( ya things didn't go well about a week after my reversal.. I guess, and I say guess because I don't remember what happened. I've blocked it out. I guess I crashed again. Underneath where they closed up the ileostomy my bowel had Crohn's and pop started coming out my stitched. Went septic again and more emergency surgery (as I said don't remember). Ended up with another ostomy on the opposite side and two gapping holes where the reversal was plus the large staple scare down the middle that now has been opened 8 times. They say I've Blocked this all out because of the drama from the first emerg surgery the first time. So, now my new stoma is leaking out the sides st 3 and 9 o'clock. I might have some fistulas and infections (dr cut them open and pus came out ugh) now where my old iliostmi is healing the bowl is bulging out and I may have a hernia! Great news just keeps coming and I am at the end of my rope m I haven't written on here because for one I can barely read or type on my little phone, and two I'm just so sad to talk about it. Its 2 ish here and I can't sleep so I thought I'd give it a try. Hope there aren't too many spelling errors and ill check in again. Love you all and your strength. Prayers are needed my way :)
 
Sorry to hear about your troubles! I was hoping the silence was for good reasons...sending prayers your way...
 
Oh no!!!! This is definitely not what I was expecting to hear! Hang in there, Susan. Something is bound to start turning around in your favor. Have you been in the hospital all this time??
 
Oh hun. What a miserable time you have had. Perhaps it IS better if you've blocked alot of it out.

I don't know what to say to make you feel better. I only hope that you are on the road to recovery from all you've been through.

:hug:
 
Hello!
Thank you for the words of support!

At this time I am still in the hospital on antibiotics. Flagyl and another trying to get infection cleared up. Met with the Gastroenterologist who will start me on Humira and Remicade when my infection is cleared up. Scared about these new meds and there side affects. It is my only course of action. Any insight on these drugs? Still suffering bad nausea and there is no talk of me going home. What day is it? 78 or something!! Lol

UGH
 
Im not usually a prayer, but after all you've been through I'm saying some for you.
i hope you get better and home soon,
:heart: Anna
 
Hello everyone!
I'm still in the hospital. Actually tomorrow will be the beginning of my 5th month!!
Infection after infection. I don't even know what to tell you all. My surgeon is trying to clean up my infection so I can go to the gastroenteroligest to begin treatment with hum era and remicade..
Still on prednisone 25 a day and take 3ml every 3 hours of dilaudid. Have an IV twice daily of the antibiotic Vancomycin. Distressing is the fact I've had 9 surgeries and my stomach muscles are gone. I have to wear an abdominal binder:(
Hmmm what else. Trying to remain strong...
 
Oh Susan, I am so sorry! Keep fighting the good fight! You can get through this and overcome it. We are all rooting for you!

With so many infections, why still pred? That can't be helping?

:getwell:
 
Billions of hugs Susan. You've really had a rough trot. I think you must have been prescient when you first spoke about your fear of the reversal. I'm really hoping you can get home soon. Did you get cdiff in hospital? I was wondering since you are on vancomycin.
:heart: anna
 
Hi all :)
I am finally out of the Hospital for now. A week shy of 6 months straight. Finally my spouse said enough! She's like a rat in a cage she needs to go home! So here's where we're at. I went to a specialist for 4 days in London. They (the team of Dr's) couldn't believe I have been on prednisone for two years! Also that i was one sick lady. They put me on Imuran and sent me back to my home hospital where my surgeon started to wean me of prednisone. The Imuran was started at 50 ml and then put up to 150ml. Hello side effects! Severe fatigue, extreme body pain, nausea, hair loss. So he put me down to 100ml to see if it would help the side effects. Nope did not. So I came home this past week on sub Q dilaudid 2.5 and IV gravol and off the Imuran. So at the moment no Prednisone or biologics. Going to London in two days and I am to start Humira or Remicade. Which both terrify me because of the side effects. UGH.. Still addicted to the dilaudid which I was weening off but had to stop because of the body pain. That's where I'm at. A very long road. At the moment I have an ostomi bag and 3 wound care spots, zero stomach muscles due to so many surgerys and have to wear a stomach binder as you can see my bowels moving under a thin layer of skin. Blah.
Let you know what happens in a couple of days. Needless to say my mental health is really being tested especially the last 6 months.
Susan
 
Susan, I am so glad you are finally at home and really hope you get some help with the humira or remicade. Don't be scared of them, I had no side major side effects from them (other than not working) but Imuran was a nightmare for me too.
Having spent over 6 months in hospital last year I can completely sympathise with you. Its funny how its great to get home but scary too.
Good luck with everything and keep us posted.
:heart: anna
 
Hey those gas pains are excruciating. I can handle most things well, but nothing seems the work on gas pains. The closest to relief I got was a hot pack and the foetal position!
Hope they pass soon.
 
Hello,
The last time I wrote was last May. I've been home now for 8 months. During those 8 month, I went on Humira and after about a month I had a heart attack. It was caused by possibly the Humira and defiantly by stress and anxiety of the last 2 and a half years of hell. I have no blockages but still have nitro daily. My cardiologist doesn't really want me back on Humira as I am currently in remission from my Crohns. Knock on wood.
I also have blood clots. A month after the heart attack I was back in emerg with pain and discovered the blood clots. I still had a pic line in that I was receiving IV gravel and it had been in the good part of a year. We'll my surgeon removed it and discovered it had bacteria on it which caused more blood clots in my neck! So home again having fragmin shots daily trying to shrink these clots. Still have my ostomi and still having to wear the tummy band as I'm sure to herniated eventually. 9 surgeries will do that! I've pretty much decided to keep my ostomi as I am terrified of another reversal gone bad and another 6 months in the hospital!
Ummm I think that's all that's happened since my last post lol.
Hope everyone is well, and I would love to hear from you!
Love Susan. xo
 
Hi Susan
just read your posts over the last couple of years. I had a very similar situation a year ago after an emergency resection failed. Everything turned real pooey real quick.
They were scary times and after spending a week in an enduced coma on a ventilator and 4 ops later I emerged with my ostomy. It took 4 months to get well enough to be up and about and the stress and emotional distress that comes with it is unimaginable.
Just wanted to send you my thoughts, you are not alone!
I am year in to the day almost and doing ok, slowly slowly catchy monkey I guess.
There has been talk of another resection at some point when the aza has done its stuff. To be honest I'm not sure if I can put myself through the anguish and risk again. As much as I hate this bag, a big part of me now feels I know where I am at with it!
Maybe it's safer this way!
Anyway stay strong and keep us posted
 

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