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Nobody asked about my Crohn's before prescribing

Started 30 May 2025 · 18 replies · 173 hearts · read 3.3k times

GethinMerthyr Tydfil, UK · 30 May 2025
about a year ago

Starting a thread on this because it keeps coming up in ones and twos: Nobody asked about my Crohn's before prescribing

Something is going on with my body and I would like to know whether it is ordinary.

What I keep tripping on is not the physical bit. It is the not knowing whether what I am experiencing is normal, and having nobody to ask who is not either selling something or frightened for me.

My prescriber has been fine, genuinely. The problem is that I get nine minutes twice a year and there is no version of nine minutes that covers this.

The thing that has surprised me most is how much of this is about other people rather than about me.

Not looking for a plan. Just company and whatever anyone has found.

58

BettinaGraz, AT
#1

My pharmacist was more use than anyone. Ten minutes at the counter, no appointment, no charge.

8

BibiRabat, MA
#2

Can I gently push back on one thing? Not the substance, just the framing — you have written twice that you should be coping better. Who told you that?

13

ÖzlemIzmir, TR
#3

Yes to the burping. It is real, it is unbeautiful, and it does settle.

11

TomásFacilitatorLisbon, Portugal
#4

Gently disagreeing with the reply above, or rather adding the other half of it.

Thank you for writing this. I am not going to add information to it. I am going to say that what you have described is very common and very rarely said out loud.

9

BryherIsles of Scilly, UK
#5

For what it is worth, the trial data on this is thinner than the confidence of the internet would suggest. Worth knowing when you read the posts.

9

PosyChichester, UK
#6

the reply above said something I want to sit with for a second.

It got worse before it got better for me, which I wish someone had said. About ten days of worse.

13

BramberSteyning, UK
#7

Building on what the reply above wrote rather than answering the original question.

The thing that changed it for me was going slower, agreed with my prescriber. I am not suggesting you do that. I am saying the conversation exists.

10

NoraDublin, IE
#8

Have you got anyone who can be with you when you do it? It made an enormous difference to me and I felt silly asking.

9me too 3

AleksLjubljana, SI
#9

Mine lasted about seven weeks and then lifted over a few days. I cannot tell you why. I can tell you it lifted.

9

NyalaAddis Ababa, ET
#10

Gently disagreeing with the reply above, or rather adding the other half of it.

Yes. All of this. I had the same in my third month and I remember thinking there was something specifically wrong with me, which there was not.

6me too 4

EphraimBrooklyn, NY
#11

Different experience here, for balance. Mine did not improve and in the end I stopped, and that was the right call for me. Both outcomes exist.

5

GethinMerthyr Tydfil, UK
#12

Reading the reply above, I recognised more of that than I expected to.

The phrase that unlocked my appointment was asking what specifically she wanted me to watch for. It moved us from reassurance to a plan in about thirty seconds.

12

BettinaGraz, AT
#13

the reply above said something I want to sit with for a second.

No advice, just recognition. That sounds exhausting and I am sorry you are in it.

6

BibiRabat, MA
#14

I keep a two-line diary and it is the only reason I could answer this question about myself. Worth starting even now.

8me too 5

ÖzlemIzmir, TR
#15

I am about four months behind you and I have been dreading exactly this, so thank you for writing it down before I got there.

10

BrackenHexham, UK
#16

I did exactly the same and felt terrible about it. You have not done anything wrong.

11

TomásFacilitatorLisbon, Portugal
#17

Gently: you have apologised three times in a post where you have done nothing that requires an apology.

15

PosyChichester, UK
#18

Building on what the reply above wrote rather than answering the original question.

Practical, boring answer: write the three questions down before you go in. I have never once remembered them otherwise.

9