Need help and info

[kiwij64]

Hi,
Had an emergency ileostomy in April of this year. I also have ankylosing spondilitis and am currently crippled from the pain as I'm taking nothing but painkillers until I can get some proper medication from Rheumatology, which is proving to be a huge problem despite the number of requests my GP has put into them, they lost the paperwork so I've been waiting three months longer than I would have had to wait. I think my surgeon went nuts at them last week as they recognised me straight away this morning when I phoned them up!

However, despite being in a huge amount of pain and virtually housebound, I was hoping I could get some help and/or info. When I went to my surgeon last week for a follow up and to discuss the possibility of a reversal, my surgeon said that apart from having Crohns in my mouth, small bowel and rectum, I also had anal fistulaes.

What I want to know is if I had a reversal, if there was a flare up, would the fistulae become inflamed too? Also, has anyone had this reversal done and how did you fare having Crohns in the rectum?

I am totally sick of my medical team giving me conflicting advice and need to be able to work this out for myself before I go back to have any kind of clarity in what I'm facing. I've been asking for Humira(Remicade) and whilst my gastro specialist seems to think I'm a candidate, my surgeon is saying no and because our system here does not look at the person as a whole, I either have to qualify for the meds either through my having Crohns or the Rheumatology option, having ankylosing spondiltis.

I have no energy, yet find that I'm having to use what little energy I have to manage my case and the medical team within it. I am frustrated, angry, very tearful and have the worst pain 24/7 which does not give me a life, let alone a quality of one.

If someone could help, I would be sooooo grateful.
Thanks for listening to my rant.
Kiwij :ysmile:

Any help or info would be greatly appreciated.

 

[Patricia56]

If you have fistulas you are not in remission. Fistulas ARE inflamed tissue - they are tracts that connect parts of your intestines to each other, the skin or other organs. They usually need to be treated surgically and medically. In Crohn's, biologics like Remicade and Humira are most helpful when combined with the use of Seton's or other surgical methods to help keep the fistula open so it can drain and heal.

And if your Crohn's is not in remission I don't understand why the surgeon is talking about reversing the surgery. That sounds like a bad idea to me.

The gastroenterologist should be treating the Crohn's - not the surgeon (if that word means the same thing there as it does here, i.e. someone who does surgery or cuts people open). Why in the world would the surgeon's opinion take precedence over the GI's???

I do not understand why someone hasn't put you on at least prednisone. Holy cow.

I am so sorry to hear you are in that much pain. Is it an option for you to go to the emergency room (or the NZ version of that) to get help? Maybe get seen by Rheumatology on an emergency basis due to need for pain management?

 

[Terriernut]

Kiwij, I cant believe they are not managing your Crohn's. But because they are NOT managing your crohn's, you are not really a candidate for reversal. Most GI's will want at least 6 months with no flare or symtoms. I'm a perfect example. Just because I'm not on anything but Pentasa, the GI doesnt want to reverse me. And I dont have fistulas, or rectum issues. Or any symtoms, I am in remission!

But the issues with the fistulas and rectum, those two things alone should keep them from doing a reversal on you at this time. I'm sorry. If you had a reversal now you would probably only get worse, with the stress of the surgery, etc.

I agree perhaps you should visit your A&E, you need to do something to get seen to, and in a hurry! Why arent the team treating you doing more to get this sorted out!!??
:mad2:

 

[kiwij64]

Hi Terrienut, that's the question I keep on asking myself? Why bother assuring a patient that you will work as a team when you do the complete opposite? All I'm asking for is a quality of care which will give me a quality of life. Like I said at the moment I don't have one, if I drive from here to town which is 14 kilometres, I cannot walk the next day, which is what happened yesterday. And then I get so tired that I can't be bothered eating and then I lose weight and it becomes a vicious circle.

I don't want to think of surgery or have surgery yet, but what I do want is some honest answers about the level of my illness, all they will do is shake their heads and say I'm seriously ill but that's about it and I'm sure you can identify as it seems that you've been through the same kind of trauma that I am. Thanks so much for your support tho, just having people around that are experiencing the same thing is such a luxury as as much as I have an awesome support team around me, they aren't going through it so thanks once again for answering my post :thumleft:

 

[Terriernut]

I'm still having a battle. Last thing I asked the surgeon was if they were 'waiting for a sign from Gawd?' I have the hernia from hell, first surgery failed. I'm not going to shut up till I hit the grave. No, I'm not on meds either. But that is because they overdosed me on the 6MP. It is honestly NOT OK that we all have to fight for care.

And its not because it's nationalized. I've been seeing Dr's privately (the same ones) and its NO better!

No matter how tired you are, you have emails and a telephone, and dont shut up, keep fighting!!!!

 

[kiwij64]

Hi Patricia,
Thanks for the very helpful advice. The surgeon mentioned that I had fistulas but didn't say whether they were inflamed or not. As far as I'm aware and as far as they seem to think that I'm in remission, as you say, fistulas are inflamed tissue, so you can see my confusion here.

I have completely complained about Rheumatology to the extent that they rang me up today and I have an appointment next tuesday at 3:30! So happy that I finally get to sit in front of him, but that as you know, doesn't guarantee anything.

My specialist is somehow in all of this taking a bit of a back seat, when I was admitted to hospital, he admitted me but was off to Australia for a holiday and I never saw him again. He never visited me post op or nothing. I have to fight to see him. It's ridiculous. So I guess that's the next question that I need to ask him re the fistula. It feels like a never ending circle. I need Humira but am not eligible for it, how ridiculous is that?!

 

[kiwij64]

Hi Terrienut, excuse my ignorance but what is 6MP? God, you sound so like me having to fight for everything, and from what you've been through too, it is majorly unfair. How painful is your hernia? Must be damn hard living with it. I thought I had one a couple of weeks ago and was admitted to hospital but got a surgeon who said it was nothing and discharged me, but wouldn't get to the bottom of the pain. My surgeon who did the op said it's scar tissue pain, so whatever!

You'll be pleased to know that I fought so hard for an appointment for Rheumatology that they phoned me today and I have an appointment for Tuesday next week at 3:30pm. So happy, but as you know that's the first step, now I just have to convince him how much pain I'm in and what he can give me to give me a quality of life. My hubby is coming with me and plays 'bad cop' extremely well so he won't take any bullshit - ha ha excuse the language.

So, yes, the message is sad but true. Fight for what you want. Unbelievable how the health system is failing us in a worldwide capacity.