Fistula(s) possible crohns

[Cdaisydoo]

Hey everyone I hope your day is good wherever you are.

I’ll just start by saying that I avoid drs. I’ll do everything possible to not go. I rarely get sick and really try to keep a somewhat healthy lifestyle. I hate the process I’m currently in because I feel like a bit of a pest when I just want answers. I’m quickly learning that I know my body best and to push when I know something isn’t right.

For the last few months I’ve been having a pretty rubbish time. I developed a perianal abscess that in itself developed a tract or tracts and turned into a fistula. The abscess or fistula never broke the skin.

(Probably weird pointless information but for months I developed lots of spots on my chest that basically went immediately after the op)

At the end of October after weeks of pain and being sent away by doctors with antibiotics, I got pretty sick and needed emergency surgery for the abscess when they discovered the fistula and partially laid it open.

The treatment from staff whilst in the hospital was excellent. Despite long waiting time in a&e as they’re so under pressure. I was constantly reassured and made to feel at ease.

It was when I left the hospital I felt as if I wasn’t given enough information. I really had no idea about all of this. Even after asking questions. They just told me I’d see a consultant in a couple of months. I still have a bit of a lump about an inch away from the op site which makes me believe there’s still a fistula present?

I have been having some tummy trouble, my stools are never ‘firm’ haha sorry for all the gory details. I have pain and noises after eating and quickly need to use the bathroom. I have zero appetite. I’m really hoping it isn’t crohns and it’s just me being stressed and paranoid.

Anyway... I meet my consultant on Christmas Eve to discuss the results of my mri.

I’m just looking some advice on what to expect?

Thanks for reading X

[SORRELHIPPO]

I have had a quite few drainage abcsesses and fistulas?(fistulii?) The former I dealt with myself, not somethig I would recommend, (I had worked in the Health Service and sort of knew what I was doing) both the fistula required admission, surgery and District Nurse follow up at home, until I could do the dressing changes myself. I was lucky?? in that I had just had the diagnosis of Crohn's Disease, so was not worrying about what it could be, and to start with my damage was in the lower bowel, so mainly affected what I sat on!! interesting!! All can say is you need to get to know how your body is now, what is a normal temperature, because sometimes a raise in this can be the first sign you are brewing something. I do not mean getting paranoid, but if you start getting fatigued and a raise in temp. for no apparent reason, you can start to keep an eye out. The thing I find the most irritating, is that what we are supposed to eat, because it is good for us, are on the list of things that make my Crohn's flare, so take VitD all the B's (this has VitC and Zinc in also) have B12 injections as my system no longer absorbs this. I keep Dioralyte in the kitchen, so the minute I have a day of the runs I can re-hydrate, anything to keep the fatigue at bay. I managed 15 years at work (part time) and only lost 2 lots of 2 months with the surgery in this time. The meds do help with control and you need to work out what your system can cope with, overdoing things and ignoring fatigue is not helpful, neither is stress. High stress levels throws my Crohn's as badly as eating an orange would, (much easier said than done!!), if you do have this or a similar condition, learn relaxation, yoga, mindfullness, go into the woods for a primal scream (I was the hippy generation) or as a friend of mine suggested, there are days out when you can learn how to throw a Viking Axe at a target!! I very much fancy the last one. All the best and I hope Christmas is good.

[Cdaisydoo]

I can find this process very hard mentally to get my head around it and to handle it. I know stress plays a big part on my own system as I’m currently quite run down, But I’m doing it.

I’m just hoping when I meet my crs the news is good from the mri.

I’ve gone from being a very private person to having to talk and be examined and that can be quite hard.

You seem to come across many drs/professionals who know absolutely nothing about Fistulas and it can be very frustrating.

[SORRELHIPPO in reply to Cdaisydoo]

I found a lot of Drs etc were quite unclued about the basics of Crohn's itself let alone the complications, I had to learn a lot quickly to tell them about what I needed. I do wish something like this site had been around 30 odd years ago!!

[Cdaisydoo in reply to SORRELHIPPO]

Oh absolutely I don’t know how you coped!

I’m in the UK and I don’t visit the drs/hospital at all really. This whole thing has been an eye opener to me. How much the system is overused and the lengths people will go to for a bit of attention. I sat the emergency room for over 12 hours just watching a stream of sore fingers, coughs and colds. Someone with itchy eyes because they touched a dog. Junkies, arguing because they can’t get a fix. People quite obviously there for the Facebook status.

Really shocked me. This generation is full of princesses. And whilst it might appease them for a short while, there’s real people with real problems suffering. I don’t in anyway mean me because, really.. I’m ok. But I witnessed some poor poor elderly people, alone, scared.. severely ill, really suffering.

I really hope something changes. I know this has absolutely nothing to do with this thread I just went off on a little rant.

It’s inspiring that you found the information yourself and had the confidence to push for what you know is best. I’m learning that, that is so important. We know our bodies better than anyone, we know when something is wrong. It was so humiliating at the start for me, I was uneducated and thought this was a ‘dirty’ thing. I was so embarrassed and disgusted at the thought of physical exams to the point of panic when it was the opposite sex. I was mortified having to go through this process and being sent away twice with antibiotics that I knew wouldn’t work. It took all my strength to admit something was wrong and seek medical treatment and I felt like it was underplayed and passed off because I wasn’t screaming with pain.

I hope you’re feeling good today!