One year on, no further forward! Advice please!

[Sazzle]

I can't find my original posts, so will start afresh...

History in brief ...
One year ago this month I had an op to drain a huge perennial abscess...a fistula appeared, I had this laid open twice...then another ( or possibly a branch off of the original fistula) appeared..... This time ( 2 weeks ago ) they placed a Seton.
The fistula is transphincteric so they aren't sure what route they will take in the future, but have told me it's an ongoing process.

I'm so frustrated and down, not just because of the itching, stinging etc, but the fact they have not carried out any tests as yet to see the cause.

I've always suffered terrible constipation, but since the fistulas developed its worse than ever.
I now can only go to the toilet by using an enema.

Because of this, I very much doubt its anything like Crohns, but I still want answers.

The other upset is that I've now had a year off work, due to the ops and recovery ( and embarrassment )
I'm self employed, therefore I really need to get back to work.
But I'm so itchy and sore ( and feel I smell ) that I don't want to as it takes me 30 minutes to an hour in the bathroom, plus lots of screams! Because I will be at other people's houses , I can't do that! Let alone a sitz bath!!

I was told to try for "temporary disability" but I don't feel it's fair if I claim for this ..... Or is it?

The whole situation has made me so low.
Any advice appreciated, thanks xx

 

[DustyKat]

:ghug::ghug::ghug:

I am so sorry to hear of all you are going through!

I am also sorry if I am going over old territory and all the questions I will ask! But when did you last have bloods done? And did they include inflammatory markers?

Have you had a Faecal Calprotectin done? It is a stool sample.

Have you the ASCA blood test done? It is a marker for IBD.

Have you ever had scopes done?

It is not uncommon to have constipation with Crohn’s disease.

From what you have said here I don’t see that it is unreasonable to claim for temporary disability. You have enough to deal with health wise, the last thing you need is to be burdened down with the thought of how you are going to manage with no money coming in. :hug:

In regards to your old posts: If you go to your profile page, click on your name next to your post above and in the drop down box you will see view public profile. Click on that option and it will take you to your page. There you will see six tabs, one of which is Statistics, click on it. The first text box that appears is titled Total Posts and contained within that is Find all threads started by Sazzle. Click on that and Voila! All your threads will be displayed.

Dusty. xxx

 

[Sazzle]

Thanks Dusty,
It's the friendliness on here that made me return.

I last had bloods carried out about 6 weeks ago ( at a different hospital for a different op - life! ) but at the hospital I visit for the Abscess/Fistula issues, I last had bloods in January.

No stool sample, scopes and as far as I know no ASCA blood tests........ They always say "80% of people who get Fistulas, we never know why" which may be true, but I would like other things ruled out.

Every time I see the surgeon, I'm drowsy from the operation, but I've asked to see him in-office so I can have a proper chat.
I just feel it's pointless treating it without finding, or at least trying to find, the cause.

Sazzle xx

 

[DustyKat]

:ghug:

I agree wholeheartedly. Whilst it may well be true that X amount of people that develop fistulas have no known cause I too would like to have things ruled out before they reach that conclusion. And I don’t think it is at all unreasonable to have other scenarios explored.

Could you go to your GP and have them do a request for Faecal Calprotectin and ASCA? They are tests that can be ordered by the GP in Australia so I imagine it is the same there since we have very similar health systems?, and you have enough medical history to support them being done. If either one is positive it is good grounds to move onto scoping. But heck, even if they aren’t with your history I still think it is grounds to have a decent look at the bowel.

Do you have any family history of IBD or other bowel disorders?

Dusty. xxx

 

[Sazzle]

No one in the family suffers ( I have a cousin who does, but no immediate family )
I have an appointment with my own doctor on Thursday, so I will definitely ask him for the tests, thanks so much for your advice.
XX

 

[justbreathe8]

I remember your posts from when I was on here all the time about a year ago with my last surgery. Im sorry to see that you are still having surgeries! Hopefully the seton will help repair things and get you back on track to normal. I had fistulas too and the doctors (and my mom) were sure I had Crohn's. But after tests, it turns out I did not have it. Have you tried doing things to "combat" the constipation? Im actually pregnant now so Im back to doing things to be sure to avoid constipation and having to relive my nightmare all over again… I take probiotics and try to eat things daily like prunes, or split pea soup, or beans. Lol I know that sounds kind of stupid but it definitely works for me so I thought I'd suggest it. As for working, Im sorry, I had to take alot of time off last year too. Have you looked into any of the companies where you work from home? I started that with my surgeries last year and it helped keep my mind off things when I couldn't get off the couch as well as a little bit of money so I didnt feel like I was totally worthless to my husband lol. I hope you find the answers you are looking for at your doctor tomorrow!

 

[Sazzle]

Hi again justbreath
First of all congratulations on your pregnancy!!

I never thought about companies that offer work from home, that's something I definitely need to look into! Thankyou!

Sadly I've tried everything I can think of/been recommended for constipation - its something I've always suffered with, but is definitely worse since the abscess/fistulas started..... It gets to the stage where I just keep giving up on asking the doctors to look into it.

XX

 

[justbreathe8]

Your welcome!! Ugh, yah I know how frustrating this whole situation is. Im sorry you are dealing with this!!!

 

[Muppetgirl]

I'm sorry you are stuck Sazzle. I started out being treated by a CRS (for a different set of problems), but colonscopies were still carried out as a matter of course.I also saw my CRS in regular outpatient clinics as well as pre and post op. I was quite shocked to read that he only spoke to you after surgeries. I personally think you have a right to request more of this surgeon. I also think it might be worth asking for a referral to a GI, I think your history is enough of a reason and you might find you have more luck getting a diagnostic work up with a GI (though many CRS will do this, but I think you have been unlucky). Also I think fecal calprotectin can only be requested by specialists in the UK. I hope you get some answers. Keep us posted.