Crohn's Disease Forum » General IBD Discussion » Why will no one listen to me???


01-18-2019, 02:02 PM   #1
EvieBaby
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Why will no one listen to me???

I have been really very ill and having a flare for the last week or just over, and have been trying to hard to get an appointment with the IBD team at the hospital I'm under. I eventually got given an appointment today at 3pm. which I've just got home from.

The nurse on the phone told me to come early before my appointment, get an abdominal xray done, have some blood tests done and bring a stool sample. I got there early, went to radiology but there was no card there for me so no x-ray to be had. I then went to get my blood done and there were 36 people before me, I waited for over an hour and then had to go to the clinic appointment so didn't get bloods done.

I waited nearly another hour to see the Doctor, and he wasn't interested in anything I had to say. I tried to explain how unwell I'd been, trying to go over all my symptoms and all he was doing was doing something on the computer and just kept telling me I need to get back on my infliximab, which I've not had because I've been on and off antibiotics for months. According to him I should have had it anyway, but how can I when I ring up and the nurses tell me not to come because i'm on antibiotics??

He said they would test my stool sample and see what the results are and make a decision. I asked what would happen in the mean time, because I was feeling so unwell, and he actually just said "nothing". So basically I've got to wait for the results of the stool test, but he's said that if it comes back clear then there's nothing for him to do.

I don't take anything for my crohns other than the infliximab which I've been on for years. There have been many new advances with medicines since then, so why can they not look at something else which might help me? I feel like I'm just stuck in the middle of nowhere, with no one prepared to actually listen and help. I absolutely detest having this disease as it is, but to just not get any help when I'm incredibly unwell is appalling. I've got no energy left to deal with this any more.
01-18-2019, 06:03 PM   #2
Scipio
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I looks to me like you are stuck in an overcrowded and underfunded NHS clinic and being treated by a doctor and medical staff who are looking to cut the amount of time and money they spend on each patient to the bare minimum.

Can you afford to go outside of NHS and consult with a gastroenterologist in private practice? That may be your best bet to get the care you need.
01-18-2019, 06:24 PM   #3
Scipio
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Also, I don't understand why the antibiotics means no Infliximab. While it is important for the doctor to know all the drugs you are taking, including antibiotics, to the best of my knowledge taking antibiotics is not contraindicated for Infliximab.
01-19-2019, 01:00 PM   #4
EvieBaby
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Also, I don't understand why the antibiotics means no Infliximab. While it is important for the doctor to know all the drugs you are taking, including antibiotics, to the best of my knowledge taking antibiotics is not contraindicated for Infliximab.
When I first got started on Infliximab I was told that I couldn't have it if I had any infections. Whenever I've had one, I've rung the IBD nurses and they've told me I can't have it so I've just done what I've been told.

I can't afford to go privately unfortunately so I've just got to stick with what I've got, but I've done a complaint letter today to send off next week. I'll just have to see what happens from that I suppose.
01-21-2019, 11:34 AM   #5
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Sorry to hear the appointment didn't go well after you'd waited all week for it. I wonder if it's worth getting your bloods done at local GP, so that when they are reviewing stool sample they can see results of that too? Especially if you keep getting infections :-(
01-21-2019, 06:25 PM   #6
my little penguin
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Definitely have the doc add a note to your chart to allow biologics while on abx
Ds has been on them for years
The only rule is no infusions or shots for the first 24-48 hours of abx
Or if your currently running a fever
But once fever free
Or more than 24 hours on abx ds is cleared to get his shots /infusion

How long since your last infusion?
If your not getting it regularly you might have built antibodies to it

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02-02-2019, 06:38 PM   #7
Mountaingem
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I'm a bit late to this but I've been going through something similar. Your blood tests should tell the doctor if it is Crohn's or an infection. I ended up in the ER with a massive bowel infection and have been on Levaquin and Flagyl for three weeks.

As for the antibiotics, it depends on why you are taking them as to whether or not you can take Infliximab. My doctor will let me take it when I am on Flagyl for a bowel infection but if it's c. difficile or for an infection, it isn't so much the antibiotics but that they don't want the infection to get worse because of the immunosuppression from Infliximab.

Having a doctor who won't listen to you is the worst. Is there any way you can go to someone different?
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02-02-2019, 06:40 PM   #8
Mountaingem
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I'm a bit late to this but I've been going through something similar. Your blood tests should tell the doctor if it is Crohn's or an infection. I ended up in the ER with a massive bowel infection and have been on Levaquin and Flagyl for three weeks.

I know that prednisone enemas can make bowel incontinence worse if the underlying Crohn's isn't also brought under control or if you have a bowel infection.

As for the antibiotics, it depends on why you are taking them as to whether or not you can take Infliximab. My doctor will let me take it when I am on Flagyl for a bowel infection but if it's for c. difficile or for a bladder or respiratory infection, it isn't so much the antibiotics but that they don't want the infection to get worse because of the immunosuppression from Infliximab.

Having a doctor who won't listen to you is the worst. Is there any way you can go to someone different?
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