Scared of the pain :(

[guest78]

Hi all,
I have been dealing with a peri-anal flare up as well as fissures and abscesses growing since September. I have had a flexi which I found it so painful due to such a high level of inflammation and soreness that it has triggered a lot of anxiety. I also had an MRI and was given steroid suppositories to try and treat it all. They themselves bought me to tears.
They treated the inflammation in my buttock with two sets of antibiotics which begun to make me feel better but after the weeks course ended I have once again gone down hill. I'm in a lot of pain and so so low. I am fed up and frightened about what will happen next. I am so worried about certain procedures which will be painful. I feel unale to cope with much more, I am at the end of my tether with it. My consultant has not been very informative or helpful and has now gone away on holiday but no one else at the hospital will talk to me, telling me to go back to my GP.
On top of this, I am in the middle of Uni and they are meeting to discuss me leaving for the academic year and returning in September once I'm better.
I hope someone can help me. I don't know what they might do next but I am really scared
Gabi

 

[guest78]

I am also suffering from sever joint pain in one ankle especially. I am on crutches to move around the house as I can't put weight on it or walk properly. I'm not sure what to do about this. When I mentioned this to me consultant she didn't give me any answers.

 

[moogie]

This Dang plague is garbage. We are always in pain for something or another. Believe me dear you are not alone. It will get better at some point to give up and keep talking to us. the only thing that makes enduring this disease is being able to talk about it.

hang in there...

 

[Grumbletum]

Hello Gabbi. I am so sorry you are having such a horrible time :-( What is your GP like? Are they sympathetic and easy to talk to? Is there someone who could go with you to see the GP and/or the GI? It sounds like you could do with a bit of support and someone to help fight your corner.

 

[acheallova]

Oh Gabby, dear, keep positive. We are here with loving arms for support. Hopefully we can offer comfort, compassion, understanding and support. Please feel free to vent away and discuss any/all issues. Have you spoke to your dr about pain meds? For when you really need them? Are you currently on any meds? If so, are any of them " doing anything for you" in your opinion? Thoughts and prayers for you! Muah- hugs-

 

[guest78]

I am on Humira and azathioprine. Which have kept me well for nearly 2 years, up until now. My consultant is not easy to approach, I have taken my mum with me before but as I am 21 my dr barely acknowledged she was there. I have asked questions and tried to explain that I was in a lot of pain and just didn't feel the meds I was on were helping and I was told by dr to "chill out". I have emailed and called my nurse specialist. But she has not got back to me. thank you so much for your support. It's becoming very hard to stay positive when Nobody seems to help.
My local GP was supportive and apologetic but obviously can't do much to treat me as I am under a consultant.
Xx

 

[exit4]

You were “told by dr to "chill out”? That is absolutely not acceptable – I would demand to be seen by someone else or speak to that doc superior! This disease is hard enough to deal with without rude docs…Obviously you need something in addition to your meds to address what is causing your pain – active inflammation, abscess, fistula, etc.

 

[acheallova]

Gabi,
Stay strong and keep after your nurse, even doctor. Keep leaving messages so that they get the point and have to acknowledge you. You have a right to treatment, so don't give up. Prayers n thoughts with you! Muah- hugs-

 

[shamrock15]

I have used something called proctofoam to help with my fistulas - steroid in a foam that adheres to mucous tissue. It helped me out a fair bit. Remicade didn't completely take care of them, but the foam finished the job. Are you able to change your GI? That is what I had to do with my previous quack. He thought my fistulas and crohn's were enough to warrant remicade, but wouldn't offer any other assistance over the half year until I was able to start it. That should have been my first clue. I think you have one, and unless you have had very other good experiences with him, think maybe you should be looking to change. If he can't sympathize or empathize with your current condition, you won't get the treatment you need.

 

[guest78]

Hi guys. Thanks so much for your support. I was eventually given an out patients appointment. I think it shocked my consultant to see me. And how un well I have gotten. I couldn't walk un aided to which she said was " abit dramatic". But once she took my symptoms and saw my joints I have been admitted to hospital. Have been here now 6 days. I am on IV steroids, seen a rheumatologist nada physio for my joints which are on their way togetting better. They have donea CT which only showed active crohns and I am waiting on my MRI results. I am still considering swapping my GI. I feel so let down that it has gotten to this point

 

[exit4]

I am glad you getting the help you need and feeling better. It maybe a time to find another GI - It took me years to find a good GI that is treating my whole Crohn’s and not just one symptom. I do also have joint pain that is mainly affecting my buttock/hips.
All the best 2 u!

 

[guest78]

I think you may be right. Once I am out of here I will look to how I can go about changing and finding someone who works well with me and my disease.
Thank you xxx