Naive and wanting 2 learn about surgery procedures

[kimmy86]

hi all

Just wanted 2 ask a few questions hope you
don't mind. At my last consultation I was
told my crohns was very active and doesn't
seem to be settling with meds. the only thing
to have settled me so far is prednisolene but at
6 a day they say I can't stay on these! I am now
trying azathioprine again I tried these once for 3 weeks
but just seemed to feel even worse but
Docs say maybe I didn't give them enough of a
chance. if they dont have any effect the only
option then is surgery and I really dont know
what to expect! with all surgery do you have to have a bag?
this worries me I'm only 25 and the thought is so
Off-putting I'm just scared of what is to come I
suppose so any advice would be greatly appreciated

Thankyou everyone

Kim xxx

 

[Crohn's 35]

Hey Kim tell us all the meds you have been on...have you tried Remicade or Humira? If not I would try that first. Surgery is the last option ... in most cases.

 

[KWalker]

Pen is right. I would definately agree that surgery should be last. I went through a time when absolutely nothing would work for me. I tried everything. I don't know what happened but things turned themselves around and now I'm doing better than ever, and no surgery. I would say unless you're in absolute pain I would try and hold off.

I am also curious about the bag question though. Does every surgery from crohns result in a bag?

 

[Crohn's 35]

No Kwalker they don't. I have had 2ft of Ileum taken out and no bag... Some people do but depends on where it it located.

 

[kimmy86]

So far I am taking pentassa and now am
back on the azathioprine I am also taking
Prednisoloene still but coming down
gradually each week down to 4 a day this
week. My crohns is in my small intestine ileitis
they said when I was diagnosed through a CT
scan and a colonoscopy. My large intestine is so
far free from damage!! I havnt tried humira
no what is this?? The pain has been the worst
part of this disease horrendous like no pain I have
ever felt and the flare's seem to come weekly
I am only getting few days were I am able to
go out and do day to day things my body seems
to hate food!! I am so hungry!! it feels as though
there is no hope and I will never manage to settle this
down through meds but I am only newly diagnosed in June
this year so still trying to find out about other peoples flare's
and how they cope.

All your advice means a lot thankyou xxx

 

[ksjacksonjr]

Surgery should be your last option. I had 9 inches of my large and 3 of my small removed removed due to a complete blockage. The scar tissue had built up and when inflamed i couldn't even pass loose stools. My wife found me passed out on the toilet, and brought me to the hospital. The did the emergency resection. Up to that point I had been on prednisone and azathiaprine for about a year. After that they increased the pred, but I couldn't take it anymore because of the damage it was causing my joints. I got to the point i couldnt even walk my knees hurt so bad. Then I was put on remicade. That worked for a bit but my body developed antibodies angainst it. I have since been on humira. I have gotten the best response from this. I take 1 shot a week. Now I may have to stop that because of a persistant cdiff infection. But I would recommend humira over remicade. It is easier to use. you inject yourself and do not have to go the hospital to have it administerd. But if you do not have insurance it can be expensive. its like $1000 an injection. If you cant afford it Abbot, thats who makes humira, has a patient assistance program. When I lost my insurance they gave me the drug for free untill I was able to get insurance again. Your GI doctor just has to fill out some papers for you and send them in. At least thats the way it worked with me. I hope the best for you. And it is ok to be scared, most of us have been there once or twice.

 

[KWalker]

If you haven't tried Humira, I'm going to assume you haven't tried Remicade either. I would definately try those before surgery, as well as Methotrexate. All three of those are injections and for the most part are really effective. I know Remicade is extremely expensive (roughly six thousand per injection where I am) but it's all covered by the government and although you need to be approved to get the drug, if your doctor is telling you you're problem is severe, you would get approved.

I would definately talk about these with your doctor before he pushes you to surgery. You do have options, make sure YOU are comfortable with the decision and don't let him make up your mind for you. Sure he knows what he's talking about, but you're the one that has to live with the decisions.

Best of luck!

 

[kimmy86]

i havent tried or been told about remicade or humira
this is interesting as I was told at my latest
consultation that I had 2 options try the
azathioprine again if that failed there was nothing
else they could do but surgery! funny you say
that both these drugs are so expensive it's as though
they do not want to mention them to me! I was
repeatedly told there was nothing wrong with me before
my diagnosis that I was just depressed or had a bit or IBS
you sometimes feel as though you are an expensive problem
having this disease thanks everyone xxx

 

[DustyKat]

Where are you located? Some countries do have a strict qualification regime for things like Remicade and Humira, so if you don't tick all the boxes the government won't fund it.

Azathioprine will take at least 3 months to become therapeutic. Have you had a TPMT test done to see if you have the enzyme needed to help metabolise the drug? Many people do have issues in the first few weeks but often tricks like splitting the dose helps to alleviate the initial side effects. What side effects did you have?
We have an Imuran forum you might like to browse through...

http://www.crohnsforum.com/forumdisplay.php?f=64

As for surgery, yes, in most cases it is a last resort. In my children's case however we had no choice due to the complications of fistulising ileal Crohn's. They have both had resections and neither of them required a bag. A temporary stoma is usually done if they come across unexpected complications or the inflammation is acute and extensive. They do a stoma because they can't join inflamed bowel together and by creating a stoma and reconnecting later they are able to preserve much more bowel.

Dusty. xxx

 

[kimmy86]

Hi dusty
thanks for your reply. I have been reading about
your children since I joined the forum I'm so glad
they are both doing well now!

I live in Liverpool in the uk not sure what the rule about
the likes of remicade and humira is like here. I was started on 2 azathioprine tablets a
day at first but was flaring every other day with severe
vomiting pain and fatigue this might not even have been down to the
azathioprine though cos I haven't had much of a break since I was diagnosed
so they have halved my dose for now and I am
going to see how I go on them again just wish my symptoms would settle for some
relief and so I could build myself back up a bit and put some weight back on

Kim xxx

 

[kimmy86]

Ps: no I haven't had a TPMT test done what is this?
and thanks for advice on having a bag after surgery also
I am glad to know if it does finally come to that point
there is a chance it may not be necessary xxx

 

[DustyKat]

Thanks hun.

I don't really know about the UK but I have read on here where it can be a bit of a lottery depending on what Trust you are in. Also, being government funded, it is bound to have set guidelines and criteria as to who is eligible.

A TPMT test is a blood test that measures the level of that particular enzyme in the liver. You need that enzyme in sufficient quantities to break down the thiopurines in Azathioprine. If you don't have it or have it in low quantities you are at greater risk of the more serious side effects of the drug. It is a test that normally takes at least 2 weeks to receive the results.

When commencing Azathioprine you should also be having regular blood test to monitor your white cell counts and liver function at least weekly for a month and then fortnightly for a couple months and eventually you pan out to 2 or 3 monthly. The main thing is you continue to have your blood monitored whilst ever you are taking it.

Good luck and keep us posted!

Dusty. xxx

 

[Emily]

I got sort of bothered when people insist that surgery should be the LAST resort and should be avoided at all circumstances. Most of the time these are people who have not surgery. Surgery turned my life around. I would not be in school, pursuing a degree, eating, and being normal if I refused to have surgery until I tried everything. I accepted my GI's medical opinion that I should have it, and it was extremely beneficial, and I wouldn't have wanted it any other way in hindsight.

Kimmy, not all surgeries result in a bag (mine didnt)! If your docs decide that surgery is best, we are all here to help you through it! I had mine when I was 18, your 25, and us young people heal up quick! I know it's scary, but it is well worth it if you aren't responding to drugs. So many people have been through this and we are here to help you through it too!:hug: