Surgery date set and not happy!

[mcjmalaboot]

I spent last week in hospital really unwell and they decided that they needed to do bowel resection surgery to remove a 30cm stricture. I was released Friday and have since been back once due to pain.
I am on a full liquid only diet, plus 37.5mg of prednisone, 400mg of azathioprine and endone for the pain. They will only give me 4 endone tablets to take at home because if the pain gets worse they want me to go back to the emergency department.
I did this Tuesday night which led to a 4 hour wait, a doctor who had no idea about crohns and endone and home.
So the hospital has called today and my surgery is booked in for March 20th. 3 weeks is not so bad but I feel so crappy already from the liquids and medication I am not sure how I am able to cope. the weekly trips to the ED are bad enough and so exhausting.
Every doctor I see keeps telling me how bad things look and how urgent I need the surgery so I can't understand why the 3 week wait. I know everybody has stuff going on but I have no idea how I am going to get through the next 3 weeks in so much pain.

 

[seaofdreams]

You poor thing, I'm so sorry to hear that you're in so much pain. Might your GP prescribe some better pain medications for you to last until your surgery?

Also, I love your gorgeous mal, I have a mallybutt too

 

[mcjmalaboot]

Thanks Nicci, went to my GP today and he has prescribed Endone for home to try and get me through.
So fingers crossed I may get some rest and sleep.
That is Shiloh, he is our third mal. I love the breed so much. They all just have amazing, different personalities. Plus great company when your not well.

 

[DustyKat]

Since that is the plan of action they want you to take do you have the GI and/or surgeons mobile number? If not I would ring the surgery and ask for them. Then before leaving home ring the ED and give the number to the staff and ask them to contact your doctor for instructions.

There can be reasons to wait. I can only assume that since you are on Prednisone then inflammation is present, the liquid diet will also help to settle with this. The less acute inflammation present when operating the better. It leads to less bowel being removed and also reduces the likelihood of a temporary stoma. Perhaps this why they are trying to hold off??

400mg of Azathioprine? That is large dose. If you don’t mind me asking, are you a big person?

Dusty. xxx

 

[pink&green]

Sorry you are having so much pain sending:ghug:

 

[mcjmalaboot]

DustyKat I have been trying to get a hold of my GI and I leave messages with them telling them whats going on and they tell me I need to see him asap they will have him call me, then days go by and I go through the same thing. I feel like I am not getting anywhere. I have been to my GP and he has given me a script for Endone so I guess for the moment I just stay on that.

I am about 84kg so yeah a bigger girl hence why I thing the 400mg of Azathioprine. They did mention they wanted me on the lowest dose possible of prednisone for the surgery so I am assuming as you said that this is one of the reasons for the wait. It just annoys me because when I was in hospital they told me on the Wed, they would probably do surgery on the Fri. The Fri came around and they explained there was no theatre time so hopefully in the next week or 2. Now its 4 weeks from being in hospital til they will do it. I am scared but have finally got my head around what is going on and just want it done now.
I am going to try and work through the pain and return to work on Monday. Maybe with being busy the pain may become a second worry and time will move fast. Fingers crossed it works.

 

[DustyKat]

Ugh! :yfrown:

84kgs isn’t that big and with that weight 400mgs is still a huge dose!

Are they basing this dose on Thiopurine Metabolite results? This can push the dosage up considerably compared to your size.

Metabolite results would appear as 6 TGN and 6 MMP.

If not then their weight calculations are way off. Normally a weight calculation is 2-2.5mg per kilo. So really even the highest dosage only puts you at 210mgs.

Dusty. xxx

 

[mcjmalaboot]

thanks Dusty I am learning all this very slowly! I was on 200mg. Then a few weeks back after flaring started the GI upped it to 400mg. The surgeons went through all test results and agreed to keep it there for the meantime.
I don't really know results for anything. My GI works from the hospital and all appointments are made through the hospital. He has 2 GI nurses that work for him that I ring if I have any problems but as said before they keep telling me I need to see him and he will call but he hasn't so I ring back and they say they will chase him up and get him to ring and it goes round and round and I get nowhere.
When I was hospitilised last week, they said he was on holidays and so his colleague did all the GI consult. When they discharged me they said they would make a follow up with my GI in the next 2 weeks. They contacted me with surgery date and I asked for GI follow up and they said nothing had been made so next appointment is April 17 which will be a month after surgery so who knows!
My GP is ok but he is more or less I will give you pain relief but everything else is up to the specialists.
its all so much fun!!!!

 

[DustyKat]

Bloody hell. They must have an email address so get the email of the nurses so that any correspondence is in writing and you have exact timeframes. That is not to say this system will be any better but it is harder to ignore what is in black and white. Just sayin’ :wink:

That is a mighty big increase in Imuran. How long have you been on it and how often are you having bloods drawn?

Do you mind mentioning what hospital? If not that is fine.

Dusty. xxx

 

[mcjmalaboot]

t the moment I am not having any bloods done. I started on the Imuran in Novemeber and had weekly bloods, then after 4 weeks went to fortnightly then the last lot were done in the hospital 2 weeks ago. I have been on that dosage since early January.
I am going through John Hunter Hospital in Newcastle. They have been really good up until this point when I started to get sick in Jan. I had an MRI done in early Feb which they told me was were they identified the 25cm stricture with a less then pin whole ileum. I was really annoyed because it is based on that and my bloods that they are doing the surgery yet it took me to go to the hospital in so much pain for that to be actioned. Those MRI results sat with my GP and GI and neither of them contacted me to discuss the results. I even left 2 messages for the GI after the MRI to see if he had results and what they were, Its all very very frustrating.
I thing with the dose of Imuran, plus 4 weeks at 60mh of pred (now today finally down to 20mg) a liquid diet for 2 weeks and endone for nearly 2 weeks I am just very very tired cranky and frustrated.

Thank you so much for your support xoxoxox