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I &D made things worse-- I think

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Posted 6/20/2019 12:28 PM (GMT 0)
CRS could not find a fistula tract although the MRI and CT were clear as to its location. He unroofed the abscess but there was no drainage at all.

For 2 days following I passed liquid stool/gas from fistula tract. I've never had this before and it's painful and weird.

I'm having solid bm's. I don't *think* there's anything coming from fistula but it feels like there's something in there. It's painful and annoying. It could also be that I'm still recovering from the surgery and the pain is where the abscess was. I'm terrified things are worse. I'm taking Oxy for the pain, sitz baths..yada yada.

Why couldn't he find the fistula when there's cleary one?

I follow up with him next Wed. but I really don't want to go. I'm annoyed with how condescending he was in the OR. Everyone dismisses my horrible experience with setons and I'm the target of surgeons ego.

Could there be stool trapped in the fistula? What do I do about it?

Thanks.
Posted 6/21/2019 5:02 PM (GMT 0)
UB Tough, I feel like at this point I have no idea what to say. Einstein is credited with saying, "The definition of insanity is doing the same thing over and over again and expecting a different result."

It's clear that you need to make some changes, but so many of your posts list all the reasons why you're not able to make those changes. I don't know what more can be said that hasn't been said or suggested already.

I hope the tone of this isn't coming out as rude or pushing you away or anything.

You just are so firm on what you will or won't do (like a seton), so you need to find out what you CAN do, and yet you're also dismissive of any suggestions that are offered. There's really not much more anyone can say other than you need to change things (doctor, location, or what you'll allow), or you're going to be stuck in the same position.
Posted 6/21/2019 10:44 PM (GMT 0)
Sci-fi- exactly! the definition of insanity would be doing setons again, just like your quote suggests.

I’m wondering what changes you’d suggest because I’ve had 4 surgeons & 9-10 I & D’s & failed setons as you know. This is the 3rd time a surgeon wasn’t able to find the fistula opening despite evidence of location. There isn’t anyone in my city & beyond that repairs fistulas. They ALL refute the evidence.

I’m on disability and can not afford to leave the country even though I have referrals to surgeons who repair fistulas.

Health Canada has twice rejected the stem cell study that’s going on in the US.

Yes, I’m burned out, have ZERO Gyne support & am severely depressed. This is the only place for me to vent because no one understands what a fistula is like. Yep. No one understands having 3 butt holes. Yet, as you said there’s nothing more to say. So I won’t bother anymore because venting isn’t welcome nor is asking the question in my original post—-which you did not respond too.

Thank you.

Post Edited (U B Tough) : 6/21/2019 5:53:22 PM (GMT-6)

Posted 6/21/2019 11:50 PM (GMT 0)
What SciFi said was very well stated and was excellent, kind advice. I think we all wish we could help, but you’ve got to try your best to have a positive attitude. Counseling is great if needed to help with that. It’s even available online. Doctors are likely to be turned off by what you’re saying, I think telling them that you hesitate cause of x y and z is important, but tell them you’re willing to try things again. Tell them you are open to their opinions. As far as not finding them, my gyno told me sometimes it’s impossible because they can be the size of a pin. Imaging studies can see it, but not the human eye. Give things some time to calm down in your body and even though the Dr may have seemed annoying, if it were me I’d go to my appointment and be very nice to him and let him know you’re simply frustrated Etc. he may listen, he might not. I do think eventually things will get better but try not to focus on what has failed.
Posted 6/22/2019 12:01 AM (GMT 0)
Actually it quite insulting & mean. Talk about victim blaming. It’s been 4 years of abscessing. I think I’m entitled to be frustrated. i should be allowed to voice my experiences regardless of whether ppl know what to say or not. That's their issue not mine. I won't stiffle my voice about setons either. Patients and doctors should know that they fail and cause serious side effects. I speak my truthful experience to save someone else because I won't be the last person to have such an experience.

I woke from surgery without a penrose and no doc to consult with. No abx, no explanation, nothing. I had to email him to find out what happened days later. I don't think as I patient I should be treated that way but I should be "nice".

They offer nothing except meds & drains. My GI is fantastic and advocating for me but if he can’t find a surgeon to repair them so I’m in a vicious cycle & now have been told to F off here.

Post Edited (U B Tough) : 6/21/2019 7:20:48 PM (GMT-6)

Posted 6/22/2019 8:12 PM (GMT 0)
I have no idea what you're going through nor do I have answers to your questions but I completely understand that you're frustrated and need to vent. Please don't stop yourself from doing so. I hope your next appointment on Wednesday goes better than expected and I really wish that you find a solution. Please keep posting!
Posted 6/23/2019 9:55 PM (GMT 0)
UB Tough, your attitude is a huge part of the problem. Believe it or not, you are NOT the first person to ever have a fistula, or even a RV fistula. If you look at studies, etc., setons actually ARE useful and effective. I've had multiple ones. One was painful, but that was due to how the surgeon inserted it and tied it.

You go on and on about PTSD, but refuse to try counseling. You're even considering doctor-assisted suicide as opposed to being willing to give one more try to something that multiple people on this forum have had success with. Here's just one thread on it:
https://www.healingwell.com/community/default.aspx?f=17&m=1768158

Have you tried SCD, which closed NY-Sooner's fistulae? Have you seen if a different surgeon has a different way of putting in a seton? There are multiple materials and multiple types of setons. You are just adamant that it's awful, horrible, etc. That goes back to if you have PTSD, you need therapy.

I'm not trying to be rude, but very blunt. You have mentioned wanting death over this multiple times, yet there are avenues that could be open if you would be willing. However, you've put up walls and refuse to accept anything that your fears have shut down.

You are welcome to come here and vent - that is just fine. However, you keep asking for questions and advice, but then sit and argue with anything and everything.
Posted 6/24/2019 2:47 AM (GMT 0)
Sci-fi—

Please STOP dismissing MY experience with setons!!! YES I’ve had 2 types of setons including the penrose drain inserted by 2 different surgeons. I’ll repeat that because you seem to have a hard time with this. 2 seton attempts , 2 surgeons 2 different hospitals. Got it??

Let me further educate you.

1) successful & pain free setons do NOT land a person in hospital for 6 weeks on 60mg of combined opioids. 6 WEEKS. Once they were removed the pain went away but then I had the pleasure of withdrawal.

2) a person does NOT continue to abscess with setons requiring 3 separate surgeries.

3). I’ve tried SEVERAL treatments to heal my fistulas with 3 types of biologics, imuran & hyperbaric oxygen.

4) YES I’ve been on SCD for years.

5). I’m experimenting with oregano oil & tea tree oil.

6) MY chiro published an article about how chiropractic helped me with the pain of a RVF. Shall I send it to you as proof?

7). Tried twice to get into stem cell study. TWICE.

AND MOST Important :


8) . This last surgery i consented to the penrose drain; A TYPE of Seton but the surgeon couldn’t find the fistula. Is that my fault too? That the surgeon couldn’t find the hole to insert it?



The only treatment that hasn’t been done is the REPAIR. It makes sense huh? If nothing else works let’s try what’s left. Right?? Why is advocating for surgery difficult for YOU? Do you believe I should wait for cancer of the fistula? Do you think I should accept pooping through the tract ? I’m not passive.

You quote the Bible & Einstein (!) but I’m wondering why you don’t support the repair nor RESPECT my right to be surgically healed? Do you not believe that of your fellow human ? If MY GI believes surgery is warranted then why don’t you? I’m wondering if you’re the type who doesn’t believe rape victims too! Just some food for thought because this speaks more about you than me at this point.

Advocating for assisted suicide is important to me for crohns, Alzheimer’s, in case I get hit by a bus etc. This makes me strong to have control of my ending, to donate my organs etc. GOod for me! Hope you’re an organ donor too!

Yes, I’m extremely depressed. In addition to crohns I have other losses So sorry it annoys you.

Please DO NOT mock me for PTSD. Shame on you. I’m not whining about it simply stating a fact. Obviously I’m not the only 1 with fistulas or PG (which literally almost killed me) but I dare say you wouldn’t want to experience what I have. I’ve had my share of therapy up the wazzooo. If you’d like to contribute my therapy funding I’ll send you my address. Otherwise I’m going to ask that you kindly not respond or even read my posts. They are simply affecting you too much and filling your head with falsehoods.
Posted 6/27/2019 6:43 PM (GMT 0)
Hello

Your experience sounds beyond hideous. The only thought I had was I read a paper by Borody a while ago where he treated previously untreatable fistulas with an anti-map/ infliximab/ hyperbaric oxygen combo and got excellent results even when the patients had tried those things individually without success. He’s an Australian GI but I was able to read the whole paper for free - not sure how to add links as I’m new but if you google it comes up.

Sorry if this is stuff you’ve already tried/ know about, it’s all I could think of.
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