Still waiting for GI to make a decision!

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xX_LittleMissValentine_Xx

xX_LittleMissValentine_Xx

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Hey everyone!
Just a quick update. I saw an IBD nurse two weeks ago, and I said I would like to start one of the biologics which was discussed a few months ago. I am not feeling too bad at the moment but that is how I have felt all this time my fistulas have been developing so I'm worried they could just be getting worse on a low dose of aza.
They said they would bring me up in their meeting which was last week. I understand why they want to discuss it, they are expensive drugs and on the surface I dont look bad! But I want to feel like I am actually doing something which could help me long term, not just tide me over until something bad happens.
Anyway, the result of that meeting was they want to do an MRI scan to see the fistulas.
So now I am waiting on that before I can get a decision!
Meanwhile I feel like one of them is building up an abscess again, which I'm hoping will drain for itself!

Also, I am still waiting on a job! In three months I have had one interview and no job offers so I'm feeling down on that!

Feel like I am going nowhere and am just generally fed up at the moment!! :(
 
I know how you feel about waiting for a decision. Briefly this is my Infliximab experience, I wonder if you might try a similar approach.

I was told that Infliximab was my last resort before surgery but it needed Primary Care Trust approval as it cost so much. It would be raised at the next PCT meeting. A couple of weeks went by and I had heard nothing so decided the process needed a little push. I enlisted the help of my GP and his receptionist was able to give me the direct number for my consultant's secretary. I rang her and explained the situation. She told me to ring the hospital's chief pharmacist and gave me his direct number. I had nothing to lose so rang him and he actually picked the phone up. I told him I was waiting for PCT approval to which he replied "You don't need that, I can sign it off. Give me 10 minutes and I'll ring you back". True to his word he rang back and said "Right, that all done, you're cleared for Infliximab".

To give you an idea of timescale - the Infliximab was first mentioned at my outpatient's appointment on 1st September 2009 and I had my first infusion on 9th October. So we're looking at around 5 - 6 weeks in my case. It would be good if you could improve on this. Let me know how you get on.
 
Thanks, that's interesting!
For my at the moment it is still my GI which is making the decision. I'm so annoyed it is taking so long! I had surgery in feb, followed by an MRI scan which showed complex fistulas. Infliximab was mentioned to me straight away and I requested we waited until university was over - June.
My date for my next MRI is 22nd October. So it feels like it is all taking forever! Just annoys me everything has to take so long, why couldn't they have done this MRI ages ago!?
 
That's so frustrating :( I'm sorry it's taking so long. I'd probably be having a tantrum if I was in your shoes. You're much stronger than I am :)

*hugs*
 
Thanks David.
I guess because I'm not really very ill at the moment. Its all just nagging worry that I push to the back of my mind. Its been about two years now since I first developed a fistula break out at the skin. I just dread to think how much it has developed in that time of doing next to nothing about it. :(
Hopefully once they do the MRI scan and they see what a mess the fistulas probably are they will want to get me onto the biologics!
 
I'm still feeling a build up in one of my fistula's like I mentioned in my first post in this thread. So I called up for an appointment with my GP this morning. They have quite a good system at my surgery where if you say its urgent and they don't have any spaces, they get a doctor to call you back within the hour to chat with you, to see if you need to go in or not. I was a bit hesitant as I am at a new surgery who don't really know my history. I briefly explained and he got me some antibiotics which was all I was after!
Good that I can get that without having to go in. I hate having to get my bum out for them every time, even though I know my body and know what it feels like!
Hopefully these antibiotics will do the trick, need to go and pick them up to see which ones I have.
 
MRI Scan today! Lets hope I get a decision soon! So fed up of waiting!
I emailed the IBD nurse to tell her about going on the antibiotics, and that I have been feeling worse the last week or so with pain, D and rectal pain.
I said: "Once my infliximab treatment has been approved, I would be grateful if we could get started ASAP"
There is no way they will deny me of it when they see the scans and they know like I know how bad it is.
I seriously hope it hasn't got any worse in the 8 months waiting since my operation....
*sigh* wish me luck peeps!
 
Sorry to hear you've been feeling worse. Hope the MRI scan went OK. Have you started on the anti-biotics yet? I was on them for 3 months after my reversal and found they seriously affected my taste buds. Everything tasted metallic. Luckily they returned to normal once I stopped taking the tablets.

BTW I waited from May 2009 when I had a CT scan to October 2010 until I had the op and it doesn't seem to have caused any further damage.

Good luck in getting sorted out, Nigel
 
Just called up to get a second lot of antibiotics. The first lot worked but I can feel it has come back again. They have given me some to pick up from the pharmacy today but also want me to go in and get it checked out tomorrow.
This is really starting to worry me now, I don't want to have to have any more surgery on it. I really don't like the idea of a seton.
Just have to wait for the IBD nurse to contact me once they have the MRI results...
 
i feel your pain (literally). My doctor wants to start biologics but I need a liver biopsy and another colonoscopy/endoscopy before he decides which one. I am having all three procedures done nov 8th, and a decision will be made after that. If my liver is as bad as my blood work shows though, absolutely no biologics and may be forced onto total enteral nutrition(barf). let me know what your mri says and what your dr decides
 
Sorry to hear your waiting too!
I woke up feeling awful this morning, really bad D, which I'm putting down to the antibiotics. I'll ask the doctor about it this afternoon! Mega fed up!
I'm meeting with my uni friends tomorrow for a weekend. I really don't want to be feeling so bad when I see them :(
 
I'm still waiting! I'm really starting to get frustrated now... Its been two weeks since my MRI scan. I called the IBD nurse yesterday and left an answer phone message, but I am unlikely to get a reply until Thursday or Friday, when they are on the phones.
I have got myself a christmas job in a jewellers and I'll be starting in a couple of weeks. I'm worried about working while I'm in pain and not feeling great. I really want to get this sorted out! I really want to start infliximab so I can have some hope of getting better soon! :(
 
I know I don't get it! Clearly I'm not moaning enough, but I don't see what more I can do other than tell them I'm waiting like I already have.
Back in March or April they almost made me feel bad for saying I wanted to wait until my uni work was over - June.
Now we are in November and I wish now I had just started it then - clearly it wouldn't have made any difference to my uni work!!
 
Sounds like you need to get angry and start pestering them (or find another GI). Have you got their email address? You should be able to work out what it is. You've got nothing to lose so don't hold back.

It can take a while for an MRI scan to be interpreted. The radiologist couldn't work out what was going on - fistulas, redundant loops, gas!! (I've since got in touch with my "sad geek" side , made a movie from the scan and loaded it onto my iPad. I want to show it to the hepatologist next week to see if it shows up the clot in my liver)

Good luck with getting seen QUICKLY, Regards Nigel
 
The nurse called me back today.
I'm glad I called because clearly they were not on my case at all! She had a look at the MRI results, said something about a small abscess and asked me questions on how I was feeling. She said she would show the doctor it all and let me know what he says.
So I'm guessing I will find out sometime next week...
At least I'm a tiny bit closer!
Still feeling fed up though!
 
So I heard from the nurse today again, with the doctors decision. I use that word lightly, its more like the next step.
The MRI scan showed up the abscess so they want me on two weeks of antibiotics, while I wait for an appointment with the surgeon to decide if they need to put a seton in. And I will have an appointment with the GI "soon"
She said they need to check out/sort out the abscess before I can start infliximab.
I understand why they are doing that.
But I am SO unbelievably tired and frustrated with this. It took a few mins after she called for it to sink in that we are going around in circles!
In July I had an appointment with the surgeon to check if I needed my abscess sorted out before I started infliximab. Everything was fine so they decided on no further changes, its only that I said I wanted infliximab that they decided to look into that further which lead to an MRI scan which has lead to another appointment with the surgeon. Because its taken them six months to get to the MRI, the abscess has formed again!
I just have to hope the surgeon doesn't want to operate.
I am so fed up. :( I want to cry.
I start a new job next week and now I am going to have to explain all this and fit in all my appointments with it.
I don't know why this is so hard!
 
hi! what hospital are you seen at? I live only 10 miles from reading so not far at all!
I started infliximab around 5 months ago. My case was seen at a pct meeting and the results spoken to me at my next appointment with my consultant a few weeks later. I also had to have an MRI before any decision of biological therapy was agreed, and then a few more tests after to ensure i was ok to start on it. I know its a nightmare having to wait for them to make a decision but i do know of other friends that have wanted it but have not been allowed it due to the strict pct rules around giving it to patients.
I hope it all gets sorted soon and everything at the new job works out ok for you :)
 
I'm seen at the Royal Berks.
Thanks, I'm just frustrated its taken sooo long! I just want to start feeling better!
Picked up my antibiotics today so I suppose I should get going on them!
 
I'm still waiting!!!
Quick update since a few things have happened which I wrote about in other threads.
I had that appointment with my GI in which I cried because I was frustrated. He did seem to feel bad that things were taking their time.
Then I got admitted to hospital because my flare was bad and I was on IV steroids. I also saw the surgeon during this time and had my surgery on 3rd Jan where I had a fissure removed and a fistula layed open.
So as I was told (or I thought I was) That we just needed the surgery to make sure there was no abscess or infection, I could start the infliximab after surgery. The GI definately said we don't have to wait to have another appointment, and I was ready to go because I have had all the preliminary tests.
So I called up the IBD nurse to find out the status of my infliximab. She called me back and said she had spoken to my GI. He said a decision hasn't been made yet and we can discuss it at my next appointment on 11th Feb. .......
aaaagh, this feels like it is never ending!
I do understand what he is saying because I havn't been seen since surgery so they have no idea if it has been successful or not.
But seriously am I going to get there? It is literally going to be a year since they mentioned it last march until when I start it isnt it?
 
Wow that's awful! It seems like your doctor is trying to give you the run around. How long does it even take to think about whether or not you're going to give your patient medicine or not? Its either a yes or no question. I personally think Remicade might be a good option for you right to take care of the fissure and to hopefully get rid of the active crohns so you don't keep having problems with them.

Especially because you've went through all the pre-tests and now you're doctor isn't allowing you to start makes me think he might have changed his mind.

Hopefully it works out for you, keep us updated!
 
I know I don't get it. He basically said I could have it. I'm worried that I turn up to my appointment on 11th and because I'm feeling well from the steroids he will say I wont need it. I will argue my case though. I have complex fistulas which aren't going to go away on their own.
 
Wow, that's crazy :( I hope you discuss how unacceptable this has all been when you see your GI in February. You poor thing :( You deserve better.
 
I did raise the issue when I saw him last, in December I think. I said to him I feel like I have spent most of this year waiting. It is bad and things probably could have gone faster, especially if it wasn't for this abscess and needing the surgery. But somehow its just what happens when you wait between each stage. Like, in september they decided to do an MRI scan, the waiting list for that was at the end of october, then I wait about two weeks for them to contact me and they don't so I have to call up and push things along, then you have to wait for the next appointment. It goes on....
I'll tell you what I am now so pleased we had health cover when I was diagnosed so I could be diagnosed privetly,would have taken so much longer on the NHS and I was so sick back then!
 

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