Recto-Vaginal Fistulas - Part 4

Hi All,
Hope everyone is OK.
Just wanted to report on my appointment which was today (And thanks for all your positive thoughts and good wishes).

The fistual definitely hasn't healed yet (they pumped some air in and I could feel it escaping through). And the rectum is quite inflamed. But they aren't sure exactly what is happening. I was seen by a more junior member of the team and he couldn't see the fistula - but only my consutlant seems to be good at that so I don't take it that it is somehow 90% healed yet! The next step is to get an endo anal ultrasound which will give them a better idea. I'm glad I went back now as something is clearly not right and they need to investigate further. I don't think it means a disaster, just a blip in progress. So watch this space. I feel better for having had it looked at and also that they are doing something.

Penny did you say you were back at work yet? If you are that is amazing.
Anyway - let me know how you are getting, on any news etc.
BEa

Hi All,
Yes, B, I am back to work. I had anticipated a longish hall with time needed to be able to funciton normally rectally again but it happened all pretty quickly. I was back in 3 weeks, including the surgery week and could possibly have gone back sooner but with the infection and sometimes very loose bowels, I thought I'd take the full 3 weeks. The healing of the wound went very well, I took zinc to help also. I'm still not eating raw fruits and vegetables except lettuce and tomatoes in small amounts but hope to gradually include those. I work with children and that can be very physical but I also do a lot of sitting which can be helpful in a way. I haven't had to make any mad dashes to the ladies room during a session which would be really hard to do.
I'm sorry to hear about your 'blip'. But I agree that it's good you're are finding out more about what is going on. NOt knowing what the whole picture is makes it hard to have a game plan to fix it. I hope it doesn't take too long. The not knowing is hard but it sounds like you're on your way.
take care to all,
Penny

Hey!

B I am sorry to hear about your blip as well. I agree with both you and Penny that it's good to know more and to feel like you are on your way to a full recovery. It's such a pain in the butt though that it takes so long! (he he I love to make puns, and this surgery certainly gave me many to make!) Good luck with the progress.

Penny- Thanks for the other blog site! I had my surgery in October, so I feel like the pain should be gone, but it's not! It had completely gone away about three weeks after the surgery, but now it's back full force too. Sometimes I really can't sit down, but it hurts so much all I want to do is get off my feet. It's so hard to be that uncomfortable when I am standing in front of a class of 8th graders! I had an "accident" the other day and had to come home to wash up. It was one of the most embarrassing experiences of my life! Thank god it was my prep period so there were no kids in my room, but still I had to tell my principal and then drive home...ugh! It was really bad. At the end of the day though, there are only two choices; laugh or cry. I choose to laugh, because if I don't, I may just go crazy! Having this issue really puts a lot of things in perspective for me. I think I really pay attention to my body in a different way now than I ever did before, and I am thankful for that.

Keep your heads up girls! Some day we'll all laugh about this! (At least that's what I am told!)
Take care,
Karin

Hi Karin,
I was just thinking about your pain and really can't come up with anything that could be in the category of expected. I would definitely go to your MD and ask her/him what it could be about. My fistula showed up within a week of my s-plasty, then 2 weeks later I had the ostomy. But after that I had terrible pain and it ended up being a severe impaction that the RN told me was 'healing pain'. Right. I think your body is telling you something isn't right.
I do feel badly about your accident. Until things improve, I wonder if you could have a change of clothes and use your RN or female gym teacher to help you in the cleaning up department, maybe making a shower available. I would share minimally or on a need to know basis. But on the other hand things come up for everyone so I wouldn't be too hard on yourself. I remember subbing once and had such a large menstrual flow I had to get to a restroom ASAP and had to ask the neighboring (male) social studies teacher to cover for me. Not fun.
Good luck to you. I hope you find out what's going on soon.
Penny

Karin,

I am a hs teacher...Since I had my ostomy, I keep a change of clothes under my desk...I talked to the nurse, so if I did have an emergency, I could use her office... I carry my appliance and clean up stuff with me....this makes me feel better...I am sorry about your accident. But we are human and so what? It happens, right.

Everyone else, thinking of you...I have been fine...have the flu today, but fine as far as the ostomy...just waiting...Be good all. B

Thanks for all the help! You ladies are awesome! It is soo nice to have people to talk to out there! I now keep a change of clothing under my desk. I have an appointment on Friday this week with a colorectal surgeon. Does anyone know what I should ask him? I suck at going to appointments. I think of all my questions after the fact! I am seeing him because at my last appointment my urogynocologist told me that because I was in so much pain when he was probing for the fistula, he would have to put me under. He then told me that I needed to be able to tell him what I wanted to do after that. If I wanted them to fix it then, or to wait and give me my options after that. He told me that I would have the options of leaving the fistula alone, plugging it with pig tissue, or having the sphincteroplasty again. Then he said that maybe I should see the colorectal guy and I agreed, but I don't really know why. I guess I just wanted to make sure that he was on the right track. So, back to my original question. What do I make sure he does, or tells me? I know I should ask him about the ways to check to see if I have a fistula, and about the pain I have been having (which hasn't gotten any better!), but anything else? Thanks guys!

Karin

Karin,

Here are some ?s:
What repair(s) do you suggest?
How many have you preformed?
What is your success rate?
What are the possible draw backs of these surgeries?

For me the advanced flap was a nightmare because it made mine worse....
The second repair surgery I had was a layered approach (vaginally) just fyi.
I have heard some things about some kind of netting thing...mesh...ask about that.

Don't be afraid to ask...feel comfortable!!!! This is such a long process...

Good Luck, B

Thanks B. I will ask those questions, and I have heard of the mesh as well. I wish I knew more about all of this. I mean when my docs talk, I feel like I understand what they are saying, then I get home and can't answer any questions that my family are asking me. It's really frustrating!

Hope everyone else is feeling ok! I will keep you all updated about my visit Friday!

Karin

Karin,
Maybe one of your family members could go with you? When you're the patient it's always harder to keep your wits about you. If you have someone with you who's not so directly affected they have a greater chance of remembering things and asking follow up questions. I always write all my questions down before I go. I read somewhere where someone copied their questions and gave a copy to their family member and their doctor so everyone would have a copy. I've also called back to my doctor after an appointment to ask questions I thought of later.
I also was put under so the MD could find the fistula and it turned out it had healed but he was planning on repairing it and to redo the sphincteroplasty if needed. I still worry it'll come back post everything but I think time will help me with that. Good luck on your appointment!
Penny

Karin,

I felt the same with all of this fistula stuff, especiually in the begining...Things have settled down now that I have the ostomy and just waiting. It is so stressful...... I can't say this enought: it is all about waiting and for me keeping mentally busy...and not dwelling too much on it... whenever i stop and think about it, I get really sad.

I think Penny is right, if you can bring someone, bring them. My husband went to a few crucial appointments with me and he really centered me.

I also brought a list of questions.

Keep your chin up!!! It gets so much better.

Penny-DO you feel pressure or anything now? just wondering if that is what is making you nervous about it failing now? Hope u r well.

BEA- How are you????? Any more blood? thinking of all of you ladies. Best always, b

So the appointment sucked. I was not ready for what he had in store for me. I thought I was going in to have a regular exam, and then to have my questions answered. Apparently they forgot to tell me that upon arrival I would have to do an enema, and then would be probed with not just one, but two scopes up my backside. Then, as if that weren't enough, he shoved in a speculum and cranked it wide, and poured water into me while blowing air up my bum.

After all of this, he told me that he couldn't find a fistula, so there probably wasn't anything there. Then he told me that even if there were a fistula, he wouldn't fix it. He said that there are many women that live with them everyday.

I asked if there were other ways to see if there were fistulas such as through and MRI or something, but he denounced them as not good tests. This awful approach was the best way to do it. Of course he could put me under and then be more aggressive. MORE AGGRESSIVE? I don't think my little body could take any more aggressiveness thanks! I didn't even bother to ask any more questions as I will never, NEVER, see this man ever again.

I hate when people tell me just to deal with this! It is so frustrating! It just makes me want to take a needle and make a connection from his bum right to his tweeter and see how he likes living with the constant gas that passes through. UGH!

Not to mention, when you give a lady who has been raped before, and has just gone through a pretty painful surgery which hasn't really stopped being painful yet, you don't shove or force ANYTHING into her! I don't think he even bothered to read my case history. I am terribly afraid of anyone touching me in that area because it might bring my attack back. I have been very vocal about that to the staff at my hospital, and this guy just totally made me have a delayed panic attack. I am so angry right now! I wish I could punch him right in the face!

So, I guess it's on to step two. Seek advise elsewhere. My GP is amazing, and since I am seeing her on Monday, I am going to get her help with a referral to another hospital. She has already said that she would help me, and she knows about my history. I think I will probably complain about this guy to her as well, and see what she thinks I should do. He just made me feel like I was crazy because there was obviously nothing wrong with me. No to mention he created a panic attack that could have been avoided had he just been gentle, and listened to me.

I know that God never gives us more than we can handle, but really this is absurd! Just to make it worse, when I got home the power was out, no one else had issues with their power just me! AAAHHH! Some days are just worse than others! I have also had to deal with the effects of the enema since the appointment, I have had to change undies several times, and I just want to die from the pain that I have now. If it was bad before, it's tons worse right now!

Sorry to vent, but I don't really have anyone else to vent to! Hope everyone else is better than me!

Karin[/list]

Karin,

I am very sorry about your experience. Ask your GP about a barium enima. Ughhhh..... I wish I could give you a hug... this all sucks and most of the probing and surgery has made me feel vulnerable, so I can't imagine what you must have felt...I am very sorry you are going through this. Ughhh... I too have had surprises like you had at your drs. an enema out of nowhere...that was really bad...so I understand that.

Anytime you want to vent here, you should and don't apologize, it's not like you can really talk to people about this issue...and if you can there aren't that many people that can understand.

Karin, I hope you feel a bit better when you read this. I am thinking of you. B

Karin,
I am so sorry for you. I've been reading your posts but not had time to respond recently. I've never had any assault as bad as that. However, your experience reminds me so much of the attitude I first had from the medical profession - which is that they readily don't believe anything is there. But Why would we make up symtoms like we describe?

I can't remember if this was a colorectal person or someone else but is not a bowel expert that will explain some of it. The following couple of links may help:

http://www.geocities.com/dinimerz/rectovaginal_fistula.htm

http://emedicine.medscape.com/article/193277-overview

The first is a personal view and the second geenral info about fistulas. I just rediscovered these links which is why I didn't mention them before.

BTW you weren't ranting - you needed to get it off your chest. I have felt so much anger and frustration with this thing. The first two years it was dealing with the medcial profession and trying to get a confirmed diagnosis and then finding someone who knew what they were doing. The second two years it has been the endless failure of treatments etc. I do though believe that I am with a good medical team now. I feel for you because it has been a horrible process getting this far. We are all thinking of you and please vent away!
Much love to all - Penny and B I hope you are OK.
Bea

Thanks. I am feeling a little better today, but I had an accident last night. I had zero control overnight, due to the exams. I wondered if I should say anything to the hospital about this doctor. No person should have to go through this, ever and if they do, they shouldn't have to deal with a doctor who couldn't be bothered to help.

As for going on, I had a brief moment of not wanting to do anymore, thinking that maybe this was the hand that I was given, but then I decided that I needed to continue on. I was thinking that when that guy poured water inside of me and blew the air, I was tilted with my head down and pelvis up. It was only after the exam that I felt the passage of gas between rectum and vagina. That should be helpful in the next appointment. At least I can tell whoever I see next my observation. The opening must be pretty low. I had often felt that way. It's almost like the gas comes all the way down the right way, and then at the last minute takes a detour.

Thanks for all of the support. I couldn't do this without all of you! Here's to hoping that there are doctors out there for me that will handle this well.

Karin

Hi Karin,
Yes you must report the gas coming thorugh at the next appointment. If the fistual is low then they often can't see it with a telescope. My first colorectal surgeon couldn't see it and put me under general to have a look but the second consultant found it straight away using his finger. The finger is a much gentler tool and I think they can feel a lot with it. It also can find holes more easily if they are lower down.

Bea