Surgery on Friday

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A1Aussie

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Sep 22, 2009
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Hi all, names John and i live in Australia and ive been told i have crones about 1 year ago .They seem to think ive had this problem all my life but has gone un-diagnosed for many years. So friday the 25 sept off to have a section ( 40cm) removed of the small/large bowl. This site has great information as to what to expect but im still not looking forward to it. On azathiaprine 175mg a day and have found that the attacks seem to be less frequent - about every 6 months instead of every 2. So ill keep you all informed.

Bye for now John:)
 
Welcome and good luck with the surgery John!

People say it helps things a lot, though it is not something I want to do for a long time yet!

I am interested though that if the meds have improved things, how come the surgery?

My doc says I don't need surgery at this time but wants to put me on Imuran/aza soon as i wean off pred. I was hoping that if I go this route it will help me avoid surgery for years ahead!

Look forward to hearing more from you

Shaz :Flower:
 
Hi Shaza, it has all seemed to happen very quickly. Ive had pain all my life (im 42 ) when i was young the doctors put pain down to growing pain as im 6foot 4 tall. The last couple of years have been getting pain re-ocuring more often , so with more investigation they have come up with Crohnes as the problem. Im really not looking forward to the opperation but wish for a normal life ,at least for a while longer. Ill keep you informed.

cheers John :) :)
 
:) Good luck on Friday John!!!

When you feel up to it, log on & let us know how it went!!!
 
Hi again and thanks for yourbest wishes. Ill try to keep you all up to date asap, should be a bit of a guide to anyone about to consider surgery as an option. Im told that i may be able to go back to work in about 3-4 weeks, sooner i hope. The doctor seemed to think as i work as a building site manager this should be possible.

THINGS THAT SEEM TO HELP ME !
Ive reduced the intake of suger - cut out all added salt - no more take away - avoid gravys and try to drink more water. The one thing that seems to triger it is stress. I note when ive had a bad day at work as in heated discussions, arguments, people dont do what they say which leads to other heated discussions which are not caused by me but i have to deal with and so on it goes.

The biggest evil is MSG for me. Anything with food additives that start with a 6 will cause me pain eventually. Chicken salt im told by my doctor is full of MSG. As soon as i stick it in my mouth i know !! My stomach seems to Know this and any foor that has MSG in it will be vomited back up in about 20- 40 minutes after ive eaten it. But once i have been sick I feel ok again and can the proceed to eat a 3 course meal and be fine. But if it gets further down into the lower intestine im in trouble.
My last painfull expierience was last Thursday, i can only describe it like someone has 2 - 10 inch steak knifes and has inserted them just below the rib cage towards each other from left and right and then at 10 second intervalls twist them slowley and then stop. Then start again but maby a bit faster this time. After afew hours it gets worse untill it makes you dry vomit , then your heart starts to race. At this point (i think) is when theres a total blockage of the bowel and you really feel like you just dont know what to do with yourself, you start to sweat sometimes shiver lay down , bend and twist and at this time you normally start to think what you have eaten ??

I hope my explinations help someone to understand what their symptems are and help them to tell there doctor of this problem. I went un diagnosed for 40years and the pain indured was beyound explination. The amount of times i heard " THEY ARE JUST GROWING PAINS" - "YOU MUST OF PULLED A MUSSLE" Ive heard alot of exqcess when i was younger but was probibly not explaining myself very well and crohns wasent very heard of years ago.

Ill keep you all informed how it all goes

Cheers John
 
i had the surgery 6 months ago. its was good for me but i still have flare ups daily sometimes more than less they last all da. but at the time of the surgery it helped me. than again i wasnt taking any of my medicine for the longest time such as m yasacol 800mg 3 times a day i just started that about a week ago.. good luck with your operation let us know how it goes
 
I Survived Surgery !!!!!

Hi all, Got home late yesterday, couldnt stay in hospital any longer - for some reason the opp seemed to make me super sensitive !!!! Preety sore and a bitc of painefull gas and had my first bowel movement thismorning = 5 days after surgery
thaes all for now , will get back later cheers John
 
14 days after surgery

Hi all and thanks for your best wishes, all pain and swelling seems to of stoped but have constant diareah thats pretty unplesent but other than that i feel ok. Im starting to move alot free'er. I had my staples out on day 10 with only 1 little split that hadent healed 100%. Im back to see the doctor today to try get something for the diareah. Its the only bad side affect so far.

I ended up having a double re-section, one on the small to large bowel and one on a fistulla in the large bowel. They told me that they had to handle my internals alot and it felt like it.

Thanks to all that wished me the bests and ill give you all an update later......cheers John
 
Hi there and glad you are healing well. I have had two surgeries and after my second one I had Diahreah bad too, I took Cholestyramine, it stops it and lasts a long time. Did your doctor give you a maintence drug? Just curious. Glad you are getting better! Takes time for the bowels to function normally again.
 
Hi John, I am new on her an not yet diagnosed similar age to you. I am glad to hear that the surgery and recovery has gone well. I hope it continues.
 
Day 19 after surgery

Hi all, day 19 and all is well. slept on my tummy for the first time in a long time. My tummy feels a little like jelly when i walk and the discomfort is subsiding as each day passes. Able to drive over my shack last Friday with little discomfort. (2 hour drive) Ive lost about 7 kg but now have got my appetite back it shouldnt take me to long to put it all back on. I was a little hesetant to put large amounts of food in when i first got home from hospital - but all seems well now. I go back to see the doctor on thursday. The night sweats have stoped now and are sleeping alot better. The doctor said there was no shortage of tissue sample to send off to see if cancer was present. The first fistulla was about the size of two clenched hands side by side with 500mm of inflamed intestine prior to this area. ill keep in touch as time progresses.

By for now John.
 
25 Days after surgery

Hi all, well its been 25 days after surgery and all is well. Still got the big D but hopefully all will get better in time to come. Im back at work ( i work as a construction supervisor) Im working half days and by the time i go home im a bit sore and swollen. My wound (cut) has healed and have little to no feeling around the middle of the cut. Im eating like a horse and try to incorpirate some fruit saled every day. The sides seem to be taking alot longer to heal , coughing and sneazing are on the inprove and dont hurt as much as they used to. You dont realise how much you use your stomach musles in every day movement untill such an opperation is undertaken. Still on Azza 175mg once a day for now but hope to reduce this in time to come.

Thats all for now . Stay possitive and remember there is always someone worse of than you.......Cheers John
 
9 weeks this Friday

Hi all , well its been 9 weeks since tho opp this friday and there have been afew hick-ups along the way. Woke up last Saturday morning about 3am feeling really strange and odd in the centre of my ribcage. It passed after afew hours. havent had any bad stomach pain/cramps since the opp. Still quite sore from time to time when i do to much bending/lifting.
Still got the big - D and the doctors tell me it not likely to get better anytime soon if ever. Still taking AZATHIAPRANE 175mg once a day.

On the up side im starting to feel a bit better each day, getting closer to something that resembles normal. Still alittle swollen and one day the left ide is sore and the next its the right.

Stay in touch John .

Every day above the ground is a good one !!
 
Hi John,

Im new to this site too and it was great to read about your progress. Glad to hear all is going well for you apart from the yucky D! Hopefully that settles down soon.
I coming into my fifth week on Imuran just wondering how long it took for you to start really feeling the full effects of it ie get into remission?

Im not really sure how bad my crohns is but for me when Im flaring I feel like death, no energy, nausea, vomiting, diarrheoa, bad stomach pain, bloating, gas to name a few. Its not a totally new experience with these symptoms as I had previously been getting so call 'bowel infections' every year which were treated with flagyl before being diagnosed in Sept but this time the so call flare just isn't going away. Im hoping the Imuran works but have read different storys on how people reacted to it.

Im glad that you are doing well, by the way which part of OZ do you live in??
 
3 1/2 Months after Double bowel re-sections

Hi all , well i must say im feeling better each day that goes by. I still have the Big - D but its frequencies are becoming more controlable. My stomach mussles have healed well and the scar is quite thin and about 37 cm accross. im starting to put weight back on after the initial loss of about 9 kg.

i still have a bit of tenderness and occational swelling but nothing to worrie about. My bowel inflamations have all but ceased and i can eat almost anything - but milk products and milk give me bad wind ! Along with Beer !

But I find Apple Cider is fine. Im still on azathiaprine 150mg once a day but hope to come off this shortly. Well theres a short update on my progress and although i was wondering why i did this to myself at first , im glad i did as the cramping and terrible pain is all but gone and i feel much better in my self.

I understand its a big desicion to make about the opperation for re-section but for me i would rather a shorter life with little or no pain than a long one with much discumfort. it is hard to explain the discomfert and mental trauma associated with chrons but for me it was very mentaly draining before the opperation and now i feel like ive been cut free from that old life to start anew chapter in my life.

cheers John
 
Hi John,
Glad to hear things are feeling a little better for you! It's always nice to hear when people are doing well. :)
 
Good for you. I totally know where you are coming from. After all that pain, it is like being set free with a fresh start. I wish the D. was gone for you. I still battle it as well. When I take a bile sequestrant med it does cut down on the urgency and frequency. Glad to hear you healed well. :)
 
Hi all i thought id give a short report, its been 6 months now and im feeling alot better. Ive still got the big - d but you cant have everything. Still on Aza 150 mg a day but hope to soon be off it. Pain has all but gone and normal movement has returned. im defenetly alot better than i was before the opperation, just finding that sugers and milk give me alot of wind , and i mean Wind !! This has been a great web site to read other peoples stories and ill give another report soon .

Thanks for reading John
 
I just read this whole thread, and I'm so glad that you're doing well John! I just had a colostomy in December, so I'm about 2 months into recovery and am doing very well too! I hope it continues for both of us. Take care!
 
Good stuff John, glad you are doing well. If the D becomes bothersome, get some Questran, I used it for a year, and then it calmed down after that, to like 2-3 a day. Glad you are better!
 
Good to hear that John. I also had surgery about a month and half ago and already feel much better. Here's for a long remission :)
 
Hi John,

I'm really happy that you've come so far and still with a very good attitude. I surely understand all the psychological and emotional aspects of dealing with this disease and it's complications. You quickly realize that people don't really care to hear you complain about where hurts or how you feel like you're going out of your mind...etc.

I've only been diagnosed four months now but have had symptoms for more than ten years. Been misdiagnosed so many times before. I've even been told that it was all in my head.
I'm now going through the preliminary stages of finding the right meds. to control my flares.

All in all, I'm glad you're getting the opportunity for a fresh start.

Best of luck.
 
Hi again, well its been nearly 6 months now and im feeling alot better. Still have soft passings but they are on the inprove . I feel that the opperation was worth it as i have far less stomach pain than i did before. it greatly depens on what i eat, if i have a cream bun then LOOK OUT ! as the wind is nearly constant. Id win a farting compertition no worries ! it now seems that the more people i talk to the more prominant this disease is becoming, and i wonder why ?? After reading some other stories im feeling quite lucky and wish everyone all the best in there future indevers. Its a nasty disease and i now what its like to go un-diagnosed for a long period in your life and sometimes its hard to stay possitive - but what ever you do DONT GIVE UP !

Best wishes to you all . John
 
Hello again, just for a quick up-date.Its now been 8 months since the opperation to remove some small/large bowel. im feeling good and starting to gain full movement with confidance. back fishing, riding me bike and with full movement. All of which i could do after afew months, but gingerly and would normally pull up a bit soar. I dont have as much milk products as i used to and this helps alot with the wind. The scar has healed fine. im still on Aza 150mg once a day as a preventative and all seems to be going fine.

Has anyone who has been on Aza found that it has caused soar bone joints ?? My knuckles on my hands seem tender at times. I might just be getting old ...LOL....

I can literly eat anything these days ,and other than dairy products im ok with it. it was quite a big opperation, bigger than i thought previously. my scar is about 18 inches from hip to hip....so know more g-strings for me ....LOL..... Miss DR Murfey who did the opperation at the Lyell Mcuen hospital in SA did a great job along with her assistants. The opp was done in a public hospital and i could not be happier.

Best wishes to all ...Cheers
 
Glad to hear things goin well for
ya John

glad to see another Aussie on here let alone a south Aussie from lil ol
Adelaide lol

hope things keep improving
 
Hello all again,
Heres just a short message to update my situation. All's well in the land of Oz for me since the opperation 16 months ago. i recently had some stones remover from the bile duct from the liver. This sent me into the only flare ive had since the major opperation - very unplesent !!

My eating habits are pretty much normal but still suffer from the big D !! But its a little price to pay considering to the previous pain and discomfort.Still avoid milk products but are addicted to chocolate which doesent help. Still on Aza - 150mg a day and all is good.

Thats all for now
Cheers John
 
Hi all,
Its now been 22months since my double bowl re-section surgery. Ive had 1 opperation to remove some Gaulstones from a bial duct about 10 months ago. Ive now just been told im to have another op to remove some more Gaulstones and this time they are going to place a stent in the bial duct to allow the stones to pass and not block the bial duct.

My major op for me was worth all the pain. i still have soft passings along with the big - D. But its a small price to pay in comparisome to the constant pain associated with Chrones. I hope my journey has been able to help give some insite into what to expect if you do go down the path of having a re-section. These days im on 200mg of Aza once a day and so far havent had any major side affects. My scar has most of its feeling back and i can still eat all but deep fried food and milk products. I must say the Doctors have been fantastic and kept there eyes on me over the whole journey. They arent finished with me yet as my liver count hasent normalised and they think it may be due to gaulstones stuck in the bial ducts of the liver to the bial duct. They will eventually remove the Gaulbladder totally but at the moment just a stone removal and stent placement is in order. The opp is in the next few weeks so ill keep you in touch.

Cheers John
 
Hi John,

Thank you so much for updating us. I'm so pleased everything has gone well for you! Since your last posting, we created a surgery support forum. If you're willing, I'm sure many people in there would be quite appreciative if you shared your experience.
 

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