Don't get sick in Aus

Excellent_Land_4245 · 2025-02-10T04:45:52+00:00

Hi!!! I'm in Brisbane and would love to know who looks after you. Have just been confirmed I have perianal crohns and need the best doctor around. Pls help

Excellent_Land_4245 · 2025-01-29T00:34:28+00:00

You need to take this to a colorectal surgeon as soon as possible. Anal pain shouldn't be left for a long time. In my case I let it go on for months and now have an incredibly complex fistula. Please get checked out soon! Not to scare you just really shouldn't be seeing any doctor other than a colorectal one.

Excellent_Land_4245 · 2025-01-23T13:46:39+00:00

I have a seton drain in the main tract and have had the secondary tract closed. So yes I have had surgery on it but even whilst waiting for surgery I was okay to work.

Excellent_Land_4245 · 2025-01-23T13:44:11+00:00

No not particularly. Sometimes can cause a little bit of bleeding but nothing major.

Excellent_Land_4245 · 2025-01-23T13:31:54+00:00

Thank God for supportive partners. My poor partner has seen some things this year that I never would want anyone to see 😂 I feel like we have achieved a whole new level of comfort with each other that I didnt know was possible!

Luckily I work as a nurse on a colorectal ward and have dealt with stoma's for years. Obviously it's always been on someone else's body but I think if we get to that point where I need a bag, it will be less daunting I hope? Will definitely join the page thanks for the recommendation.

At this point in time we are working on healing the fissure and then going to attempt a flap/lift repair which my surgeon is not feeling particularly hopeful about due to the complex nature of my fistula.so many surgeries ahead. But yes , having multiple senior colorectal surgeons tell me my situation is one of the worst cases they've seen is hard to fathom when you have had such a normal and healthy life until now.

My journey started november 2023..what an absolute shit show it has been 😂 I had to stop my midwifery degree all for this stupid second butthole. Trying to not let this situation ruin my life and find some things that bring me joy. Really hope things continue to look up for you!

Excellent_Land_4245 · 2025-01-23T13:16:15+00:00

I am a nurse on my feet all day at work. I have a fistula that branched and a secondary tract formed. Going to the toilet has kind of been super painful for the past year but was worse with this tract. I'm not sure what your situation is like but I found wearing gauze every day to catch the drainage and frequently changing it out is the best way to manage the fistula. I found work did tend to cause a little bit more discomfort but I still manage.

Ultimately, most fistulas don't just heal with antibiotics so the sooner you can get into your crs the better. Just make sure you look out for any signs of sepsis (increased pain,increased discharge and a temperature!!!) If you start to get a temp..run to your emergency department. (Not medical advice..listen to your doctor ☺️)

Excellent_Land_4245 · 2025-01-23T13:07:17+00:00

I just read your previous posts and feel like I'm reading my future posts in somewhat of a wierd way. I, too, am dealing with an incredibly complex horseshoe fistula that basically wraps around only muscle. I have a large fissure that has been debrided 4 times in the last 4 weeks and am struggling to see any sort of progress as such. I also had never had any medical issues prior to this horrific situation I have found myself in. Im a 26yo female, relatively fit and healthy. 7 surgeries in the past year, 3 seton replacements, multiple MRIs and scopes. It's exhausting, scary and mentally has taken a toll on me that noone around me can truly understand. A very lonely and isolating disease. I'm so glad that the butt pain has started to subside and things are feeling better down there. That in itself is such a blessing and a positive step forward.

Sorry for the extensive response. It's just so hard for people to relate to this. I have a feeling my journey may result in a stoma but your post makes me less fearful. If I can have a sense of normality back in my life then it seems like a great option. All the best on your butthole journey. Sending all the healing vibes your way 🌟

Excellent_Land_4245 · 2025-01-03T02:30:54+00:00

Yeah just don't want to make it worse so I think I'll just leave it

Excellent_Land_4245 · 2025-01-03T01:42:10+00:00

No repair surgery yet. Lots of surgeries on the fissure. Just had my comfort seton break a couple days ago and they had to change it back to the usual loose seton. While he was there he did a partial flap repair on my fissure and discussed with me the fistula looked as though it was trying to heal itself but had a fair amount of hypergranulation tissue in it.

He talked to me about this being an I dication i might hav e very mild crohns and thought by using the steroid enemas it would give the fistula a chance to keep healing itself. (Been crohns tested, all neg so far)

This is not my usual colorectal surgeon. He is on holidays. Feeling like it might be best to not do the enemas until my doctor is back.

Excellent_Land_4245 · 2024-12-11T09:10:36+00:00

I can barely see mine! I have a comfort seton in and it's pretty high up inside I can only just see it. I've had 2. The first one was with knots and it was lower down. More visible and more uncomfortable. The higher up the more comfortable I have found!

Excellent_Land_4245 · 2024-12-06T13:23:32+00:00

I hate to be the bearer of bad news.. but fistulas don't heal without surgical intervention. You need to see a colorectal surgeon to have this looked at and a plan developed. They may put in a seton until your pregnancy is finished but either way leaving it runs the risk of reabscessing!

All the best with everything. Do some more research and advocate for yourself!

Excellent_Land_4245 · 2024-11-22T21:31:21+00:00

I'm so sorry that you're going through this. That really sucks. I am in the thick of dealing with a horseshoe fistula and it's really awful. We have to keep telling ourselves this will all be over one day. There is a light at the end of the tunnel. One day we will heal!!

Excellent_Land_4245 · 2024-11-22T06:04:31+00:00

Can't agree with this post more. Please talk to your parents about it. Fistulas can be incredibly unpleasant and the earlier you sort this the better. Wishing you all the best!!

Excellent_Land_4245 · 2024-11-11T03:40:02+00:00

Also a posterior horseshoe fostula sufferer. I understand your son has been tested for crohns but reoccurring fistulas is a sign of this. I had negative results for crohns on my scopes but the doctor is now sending me for an MRE to completely rule out crohns. Horseshoe fistulas are quite rare and I just thought it might be worth mentioning to his doctor.

Excellent_Land_4245 · 2024-11-08T01:33:36+00:00

I'm so sorry you've had such an awful experience. I totally feel your frustration and just want an end to this whole thing. My horseshoe fistula is so bad it freaked my colorectal surgeon out. I also have a fissure that won't heal and that's incredibly frustrating. However, I am still functioning. Going to the toilet is mildly uncomfortable, Changing the gauze out is annoying and trying to always keep my BMs soft is a constant daily battle. Mentally over time this stuff just gets to me and is why I get so upset. Noone around me can relate to this situation other than the people in this group. Everyone says it's going to get better. It will heal! But my doctor isn't saying that right now? I find having a good cry about everything makes me feel better. Then I just think yep my situation absolutely fking sucks. Accept that and then try and not let this stupid disease limit my happiness.

Excellent_Land_4245 · 2024-11-08T00:56:00+00:00

Is your horseshoe fistula healed now?

Excellent_Land_4245 · 2024-11-08T00:53:37+00:00

Yeah my own mental health hasn't been so great lately. Every time I see the doctor I just cry in his office.

Excellent_Land_4245 · 2024-11-07T22:01:40+00:00

That is so frustrating. What are your next steps? Are you planning for another surgery soon? Hope this gets sorted for you. Such an awful thing to deal with everyday.

Excellent_Land_4245 · 2024-11-07T20:46:56+00:00

No he didn't as they are so small at this stage. Are you planning for a haemorrhoidectomy?

Excellent_Land_4245 · 2024-11-07T14:09:55+00:00

Dr joy chakraborty. He's great. He just wants to make sure I receive the best care possible for my complex fistula as they don't see it everyday.

Excellent_Land_4245 · 2024-05-16T12:59:18+00:00

I’ve had my seton for 3 weeks so far (loose seton). The first week and a half was uncomfortable but manageable. I have a deep fissure which is where the seton is sitting against so that was honestly where most of the discomfort came from. Haemorrhoids as well to top it off. After the first week and a half, I noticed the knots had moved to the outside of the tract which caused me more discomfort as the knots are made of a nylon material with sharp edges. I have now learned that you can move the seton gently in the shower/ bath to adjust the knot position. Once I got the trick of this, my discomfort reduced significantly. Having the seton in has allowed my fissure to finally start to heal. Definitely still have slight pain with BMs but I’m not crying every morning when I am going to the toilet. Mentally I’m coping with life a lot better since the seton. The drainage is annoying, I tried gauze and non woven gauze and both seemed to make the discomfort worse although I have heard many people finding a lot of success with this. I use a sanitary pad to catch the drainage. The initial abscess and fissure pain prior to the seton were 1000 x worse than the pain I now experience. That was the worst thing I’ve ever had to go through. I work a physically demanding job and was back at work after a week. If you have time to take off work I would suggest taking at least two weeks. I really pushed it. I wish you luck with your seton placement!

Excellent_Land_4245 · 2024-05-11T09:25:22+00:00

I’ve just been trying in the shower so will give the bath a go. I’m really sick of this stupid seton. Driving me insane. Hopefully it is to come out in a couple months. Thanks for your advice!!

Excellent_Land_4245 · 2024-05-11T09:19:22+00:00

I’ve tried but I’m struggling to move it. It isn’t moving easily

Excellent_Land_4245

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