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Crohn's Disease Forum » Surgery » Anyone had surgery and then been given no medication afterwards?


 
10-23-2009, 10:24 AM   #1
kskitt
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Anyone had surgery and then been given no medication afterwards?

hey everyone, saw my consultant today after my surgery on 17th September, and have been given no medication whatsoever! I was wondering if this is a common thing or if i should get a second opinion and get some sort of medication?

any help will be muchly appreciated
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10-23-2009, 10:39 AM   #2
kskitt
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Shantel said:
Nice avatar! I'd get a second opinion - definitely not the "norm" nowadays. I'd do it soon.....

Are you still experiencing a lot of diarrhea?
ta - was taken ages ago when i got some modelling shots done

erm the diarrhea isnt too bad atm, i still have the occasional hiccup during the day but nothing major - but i am taking imodium to calm things down when i need it.
10-23-2009, 10:50 AM   #3
kskitt
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Shantel said:
That is good - sounds better than the last time I saw you post I think. Well...I'd get a second opinion about the meds. you want to keep your disease quiet and the resounding consensus is always comes back....so you have to stay on top of it.
yeah - i decided to start taking the imodium coz i was sick and tired of the D, and none of my docs have told me off for taking it

exactly my thinking, and im not seeing him for another 6 months eeek, another thing im not happy about, i really wish i cud change hospitals and see someone else
10-23-2009, 10:57 AM   #4
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Shantel said:
Um, that is sooo not proactive healthcare......will they let you get a second opinion- and if so - does it HAVE to be at the same hospital?
To be honest i dont know how to go about getting a second opinion, and unfortunalty a lot of the hospitals in this area are cutting down on things and arnt accepting new patients Bloody NHS - just wish i had the money to go private
10-23-2009, 11:06 AM   #5
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will do hun
u got msn?
10-23-2009, 12:39 PM   #6
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kskitt

Think a 1st step would be to contact your consultant and inquire if the lack of meds is deliberate (and if so, for what reason) or just a simple oversight.

A standard practice prior to surgery (and I'm just throwing this out there as I don't know what type of meds you were on prior) is to eliminate/reduce as many of the immuno suppressors as possible prior to surgery to allow the immune system to help in the recuperation, and in case of the odd issue with surgical meds arising. It may be something as simple as consultant wanted you free of the meds before the operation, then forgot to put you back on them afterwards. OR, it might be he/she wanted to see how you progressed post surgery without... and keep in mind some of the meds are of a type that... well, if one is free of certain symptomology, then the risk of the meds isn't warranted. you know what I mean? Some of the meds we commonly take are almost more risky than the disease itself. Could be that your consult doesn't want you to be exposed to that risk until such time as their is strong evidence to suggest you need them post surgery.

After my last op, I went meds free... till my disease all came back in a flash. I don't think (but I could be totally wrong) that any of our meds 'prevent' recurrance, they just step in to treat it when we have symptoms.

Here in Canada (different than the UK's NHS, but closer than the US model)
I can walk into ANY hospital in my province and get treatment (for free). To see a 'specialist' (which is a close equivalent to your consultant) I HAVE to be referred by my family practice physician (what we call a GP, short for General Practictioner.. a doctor who practices just general medicine, and does not limit themselves to one specialty or specific area of medicine). But, I can then make my appointments at will with that specialist, or even go back to my GP and ask for other referrals to other specialists, then see any/all of the specialists my GI has referred me to. Mind you, it sounds way easier than it actually is.. For instance, I had to wait a year to see my current GI specialist for the 1st time. One of the rules of thumb here is that the longer it takes to get into see a specialist, either the better they are or at least the more popular they are. Off the point for a moment, but locally... to get in to see/have surgery an orthopedic surgeon specialist in the city here is upwards of a 2 year waiting list... but if one travels 2 1/2 hrs south of here to see an ortho surgeon there, the waiting time is only 3 months.. simply because that rural area, tho equipped with ortho surgeons and a fully equipped hospital, surgery, etc., don't have the populace to fill all the dr's time... so hard pressed city inhabitants who get impatient (no real pun intended) just put up with the commute. Just a commentary on the Canadian way of doing things.. every one has access to free health care, but its a first come, first served method with long waiting lists. This may not be the case in the UK... the commuting to other hospitals or else getting into see other consultants. You need to check with your doctor.
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10-23-2009, 01:00 PM   #7
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GI's are now opting to start biologics right after surgery, since we know 75% of all crohn's patients will have a reoccurence of the disease, especially at the anastomosis if you had a resection. Preliminary information showing that aggressive use of biologics after surgery places the disease in remission longer/faster.

I would get a second opinion or at least ask your doctor about starting on a biologic (remicade, humira, cimzia). Check out this link as well: http://www.clevelandclinicmeded.com/...dical-therapy/
10-23-2009, 01:22 PM   #8
kskitt
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No the none medication is deliberate - but didnt think to ask why (dumbo me)

The only meds i was on prior to surgery was budesonide, and was not given any post op meds at all (not even pain relief)
10-23-2009, 01:43 PM   #9
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When I had my surgery in 1990, I was taken off all medications because I should have been Crohn's free. My symptoms returned after 3 months, then the doctors proceeded with treatments.

This time though, the Mayo Clinic immediately started me on Azathioprine (Imuran) because it has proven to be effective for reducing the risk of disease recurrence over a 6 month to 2 year period. I just answered a survey followup from them about my Crohn's. I was blessed enough to be able to say that I've been doing very well since my surgery 2 years ago. I credit that to the Azathioprine.
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10-24-2009, 05:45 AM   #10
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Well, things must be different in Nova Scotia than Ontario dude, I lived near Toronto and in a small town in Ontario and NEVER had to wait for any treatment for my Crohns - to see specialist or have surgery or anything! And it was all free so it must depend where you live in Canada - I find the health care system here -now that I live in the US a nightmare of insurance company greed and it is great if you have insurance but what about all the people who don't?! Anyway, back to the discussion about drugs after surgery - I really think you need to be on at least one of the 6 ASA drugs - I am on Lialda and my GI says it helps prevent it from coming back sooner - but who knows as everyone is so different with severity and where it is etc...I would definately go back and insist they give you some sort of maintenance drug! Just my two cents worth...
10-24-2009, 03:28 PM   #11
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I did see other GI's sooner... but, I heard about this one (inside contacts are great) and opted to wait the year to get in for a second (actually third) opinion from here. she has over 2000 patients, (hence my waiting time)... which supports the theory that the 'best' are the more popular, or vice versa.

I wouldn't trade places with my US neighbours. Chatted with a fellow in the IT field some years back... he had full health coverage thru his work in IT in Silicone Valley, but still the arrival of his 1st born child cost him $20k
10-24-2009, 07:12 PM   #12
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I'm a retired insurance person and there is no such thing as "Full Coverage". I can't count the times that people assumed they were covered for accidents, or assumed they had enough liability coverage. Or refused to pay the $20 for increased coverage because "it was never going to happen to them". Most employers offer their employees a choice in coverage at the time of employment, plus a choice in deductibles. One thing for sure $20k is a very hard hit. ouch.
10-24-2009, 08:48 PM   #13
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I am in Ontario and had to wait 7 months to get in to see my specialist. That is about the normal waiting time here. Much as Canada is so overtaxed I am glad I don't have to worry about hospital bills.
10-25-2009, 05:06 PM   #14
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well, the guy in question drove a brand new BMW (and worked in the Silicone Valley in its hey day) so I'm sure he could afford the fees. I tried to feel sympathy for him, but he was one of those stereotypical IT gurus who had absolutely no people skills... He came up to Canada to visit us (we'd purchased s/w from his company for about $2.4 million US) in the middle of winter wearing clothes appropriate for Cailfornia in the summer, including some very expensive Italian shoes... Just the proper attire for navigating on foot an icy parking lot. Long story short, he slipped, landed hard on his backside (no apparent brain damage tho), then skated the rest of the way into our building. He left everyone he met the sorrier for having met him. Which led me to go about asking my co-workers who'd suffered thru meeting him "What's the difference between a porcupine and a BMW?" (he told everybody he met all about his BMW)
10-25-2009, 09:41 PM   #15
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You can probably rest assured that he probably also took a huge fall when the stock market fell. His type don't have the brains God gave a goose when it comes to common sense. You made me laugh!
10-26-2009, 11:15 AM   #16
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kskitt said:
No the none medication is deliberate - but didnt think to ask why (dumbo me)

The only meds i was on prior to surgery was budesonide, and was not given any post op meds at all (not even pain relief)

omigosh you didn't even get pain pills after the surgery??? That's totally absurd imho unless I'm missing something here. They do cut you open for the resection right? I mean not for nothin' but when I had my gallbladder out it was done laporotically (if that's a word) and I was on percocet for two weeks after the surgery. How on earth did you survive that?
10-26-2009, 12:39 PM   #17
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I suppose not that unusual. After my last resection (2yrs ago), I walked out of the hospital without any pain meds either. I felt so much better that I refused them. I had very little post op pain, mostly just uncomfortable when I'd stand after sitting a while. Sounds like I was one of the lucky ones. 7 days after my surgery I drove a 10 hour trip home. My hubby had an abcessed tooth and was on pain pills. He couldn't drive. ha!
10-26-2009, 05:15 PM   #18
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the only 2 pains that i had was my back - and once i started moving about it eased up and after a day or 2 and was fine, and then where my drain was (and that was only when i moved) - i think nowadays if you can get a surgeon who does a "neat" job - it doesnt hurt that much
10-27-2009, 07:07 AM   #19
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well i had to go to my gp today to have a blood test, and ive mentioned waht happened at the appointment friday and have asked for it to be looked into and the fact taht i want to be on meds to try and prevent a flare as much as possible
11-03-2009, 05:23 PM   #20
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Well today after a round of phone calls to the hospital, i finally lodged a formal complaint with the hospital as i am in no way happy with the way things are.

The only response i received from my GI was that i could go on Pentasa if i wanted to but he didnt see the point as it would not do me any good - but still no answer as to why i am on no medications

Atm ive had to postpone going back to work as im worried that im gunna end up worse health wise than i was before, which has meant that they have gvien my position to someone else, but have been promised a part time job when i am able to go back

Last edited by kskitt; 11-06-2009 at 09:23 AM.
11-04-2009, 08:31 AM   #21
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Hi Everyone...I had my first surgery October 5. They removed 1 and 1/2 foot of intenstine and reconnected the ends. I wasn't on any medicines either. Nov.2 was the first time I seen my GI doctor. He finally put me on Asacol. He also wants to put me on Azathioprine. I am scared of the drug. How do people respond on this drug? I have Crohn's for 37 years and been lucky. I only ever took steriods for bad flare ups. I treated my Crohn's with marijuana(this worked for me,not advising it for others). My doctors knew I was on it. I smoked it 37 years I was afraid of drugs and there after affects. I felt smoking pot was safer for me since I am more of a natural home remedy person. My disease was located in one area near the illeum 1 foot was affected. Now since my surgery this will be the first time I will have to take meds to stop it from comming back..The new GI doc I have suggest Azathioprine..Is there other options?

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First Surgery Oct.5 2009
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11-04-2009, 10:06 AM   #22
kskitt
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shilo said:
Hi Everyone...I had my first surgery October 5. They removed 1 and 1/2 foot of intenstine and reconnected the ends. I wasn't on any medicines either. Nov.2 was the first time I seen my GI doctor. He finally put me on Asacol. He also wants to put me on Azathioprine. I am scared of the drug. How do people respond on this drug? I have Crohn's for 37 years and been lucky. I only ever took steriods for bad flare ups. I treated my Crohn's with marijuana(this worked for me,not advising it for others). My doctors knew I was on it. I smoked it 37 years I was afraid of drugs and there after affects. I felt smoking pot was safer for me since I am more of a natural home remedy person. My disease was located in one area near the illeum 1 foot was affected. Now since my surgery this will be the first time I will have to take meds to stop it from comming back..The new GI doc I have suggest Azathioprine..Is there other options?

Diagonsed with Crohn's 1971
First Surgery Oct.5 2009
hi there shilo, there are lots of medications that they can put you on, but there will be ones that are safer to take than others, your GI is the best person to prescribe it, and they will give you the best one for you.
11-06-2009, 06:52 AM   #23
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Thank you for responding.My GI doctor is a new one.My orginal GI doctor retired. The GI doctor I have now I am not very happy with. He didn't give me any options just was persistant on taking the drug Azathioprine. I am just so worried since its 4 weeks since my resection and all I am on is 4 tablets of Asacol 400mg 3x's aday and Prilosic 20mg once a day. Thank you
11-06-2009, 09:25 AM   #24
kskitt
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shilo said:
Thank you for responding.My GI doctor is a new one.My orginal GI doctor retired. The GI doctor I have now I am not very happy with. He didn't give me any options just was persistant on taking the drug Azathioprine. I am just so worried since its 4 weeks since my resection and all I am on is 4 tablets of Asacol 400mg 3x's aday and Prilosic 20mg once a day. Thank you
Can i ask where you live?
This is just my opinion, and of course it is up to you what you do, but i dont think they should just be telling you "take this" and thats it, you should have at least a partial say into it, i would personally ask for a second opinion - especially if you are paying for your health care
11-06-2009, 10:28 AM   #25
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Prilosec is for acid reflux, stomach acid issues
Asacol works in the colon to reduce inflammation
Azathioprine works for inflammation and helps to keep remission

The best advice for you is to follow your physician's advice. The risks having a reoccurence is greater than the risks on the medications. Anyone concur?
I'm an azathioprine user (for years) and had done remarkably well. The risks of lymphoma and other cancers are small
11-06-2009, 11:04 AM   #26
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I feel like such an American with all of my medical debt.
11-10-2009, 06:28 AM   #27
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UPDATE

Well i saw my GP yesterday and explained that i cant go back to work until the severe diareah is at least calmed down, so he happily wrote me a sick note for another 4 weeks off work.

He then asked if i have had the flu jab (just the normal one - not Swine Flu) and i said no and that i didnt want it as im scared of needles, and without me even saying a word he had jabbed it into my arm - so im screamed.

He also went and spoke to the dietician that was in the building who was actually doing a diabetes clinic, but said that she could have a chat with me and see if there was anything i was doing food wise that might be making things worse etc, and has suggested that i keep a food diary and she will have a world with a GI dietician at the hospital today and will see what they can do.

My GP also said that he wasnt happy in the way that my GI is treating me, but has told me to stick with him and see what happens - grrr i dont want to see what happens, i wanna have this sorted out so i can go back to work and start being normal.

Also had another therapy session last night, which has made my head a lot clearer about things and how i can change it. Really am hoping that this is going to work and then at least feel a tad bit more normal.
11-10-2009, 06:39 AM   #28
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((hugs)) Kay!

Keeping a food diary is a good thing as long as you can do the spotting patterns thing. Even before getting the worst of my inflammation down I had spotted some of the foods that upset me - I was just too stupid to actually stop eating them! D'oh!
Cutting out those things you don't tolerate will help in the long run, but not convinced it'll get you into remission on its own.
11-10-2009, 06:41 AM   #29
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beth said:
((hugs)) Kay!

Keeping a food diary is a good thing as long as you can do the spotting patterns thing. Even before getting the worst of my inflammation down I had spotted some of the foods that upset me - I was just too stupid to actually stop eating them! D'oh!
Cutting out those things you don't tolerate will help in the long run, but not convinced it'll get you into remission on its own.
ahh trust me if there is a food that isnt doing me any good then i will cut it out - actually there is only thing i can think of that i wouldnt stop, and that would be milk in tea.

So do you think that im not in remission? I wouldnt know what im talkin about
11-10-2009, 06:55 AM   #30
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until the severe diareah is at least calmed down,

This is the bit that says to me you are not in remission. If you were in remission you would be completely back to normal 1 to 3 times a day BM's of what my GE would called "formed".

Milk in tea. Hmmm. Do you have any other allergy's? like asthma/hayfever and the like...

Not exactly sure I'm "in remission" as although I'm largely asymptomatic the last colonoscopy still showed inflammation in the terminal ilium, but was at least healing in the rest of the colon.
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