Scared and confused

[travis613]

I am brand new to this forum and could not be happier that I found it today. After reading so many of your stories I realized how little I actually know about what I am dealing with and I am definitely going to ask my doctor many many more questions when I go back in tomorrow. In the meantime I thought I would go ahead and join this wonderful community and share my story to see if I could gain some much needed guidance and information.


I am a forty year old male who has had stomach issues my whole life. I was diagnosed with IBS as a young child. As an adult up until June the 26th of this year I have had to have two hemorrhoid surgeries and one anal fissure surgery along with having one minor abscess lanced and drained. On the 25th of June I went back to my Colo Rectal Surgeon thinking I had another minor abscess and he would just lance and drain as he did before. Within just a few moments of my examination he asked me what I was doing tomorrow and proceeded to tell me that I had a fistula that would require immediate surgery to fix. He stated that it was fairly large and told me he would perform a Fistulotomy with advancement flap. I have been going to this Dr for more than a decade and have never questioned him due to how good he has treated me in the past. So less than 24 hours later I was in surgery.

Now to why I am so scared and confused. First off the recovery from this surgery has been the hardest thing I have ever dealt with. My Dr did not prepare myself or my wife for what we were about to be thrown in to and to say the least it has been challenging. It was an outpatient procedure and I was sent home with this gaping wound, a catheter, pain meds only and zero anti biotics. I never asked my dr why he did not put me on anti biotics because I trust him. After draining blood and infection non stop for over four weeks things were starting to look better until last week. Six weeks in I started to drain and swell out of nowhere. I went back to the dr and he cut me again to drain the infection and still did not place me on any anti biotics. Yesterday I was so swollen I could not believe it and during my wound care it felt like a volcanic eruption happened. I have never seen so much blood and infection in my life. To say the least it has really scared me so I got on line and found this web-site.

After reading so many stories on here I realized just how little I know about what I am dealing with. I don't even know exactly what type of fistula I have and I am starting to really question why I was never placed on anti biotics and why my Dr jumped straight to the Fistulotomy with advancement flap before possibly trying a seton or some of the other procedures I have read about on this forum. I am very worried and scared that I just might be at the beginning of this nightmare instead of the end. I definitely do not want to have another surgery and I'm starting to think I may need to find another dr. I have trusted my dr without question for a long time but for whatever reason he has been extremely vague with me through this whole process. I would love to hear from some of you as to what I should ask him tomorrow and possibly as to why I was never given anti biotics to help fight the infection. Thank any and all who reply an I apologize for the wordiness of my first post.

 

[Sailorluna]

Travis, welcome to the forum. Am I correct in assuming that you do not have Crohns? People without it are more likely to skip the seton because they should be able to heal better. Are you taking sitz baths or regular hot ( but not burning) baths to help it drain? Not everyone is on antibiotics after surgery, I generally have not been.

 

[Sailorluna]

why do you have a catheter?

 

[travis613]

Thanks so much for responding. No I am not currently diagnosed with Crohns. I have displayed symptoms since being a teenager and every Dr. I have seen has at one time or another thought I might have it and tested me for it included my current Colo Rectal Surgeon that I am seeing now. After last weeks flare up he sent me for blood work and that is all. I believe he wants to see what my white blood cell count is due to the significance of infection I had last week 6 weeks after the procedure.

They sent me home from the hospital with the catheter and told me to keep it in for 72 hrs and then to take it out. And yes my sitz bath has become my best friend over the past several weeks. In the beginning I was doing for 15-20 minutes 4-5 times a day and for the past few weeks at least 2-3 times a day. The drainage and blood I had yesterday during my wound care is really what has me so worried. It was quite large and for lack of a better word, violent. It actually burst.

 

[travis613]

just got home from the surgeon. I have to have another surgery this Thursday. I am just sick at the thought of having to go through this again. Scared does not even begin to describe what I am feeling right now. Dr is certain I have Crohn's as well and is going to do a bunch more testing to try and finally once and for all diagnose me with it. I not crohn's he said his second guess was diabetes.

 

[Sailorluna]

I would guess he either missed something or did not clean it out well enough the first time. Sorry about the endless surgery. does he anticipate a seton placement?

 

[travis613]

Possibly. He said he would not know until he got back in there. He told me that he could not do another advancement flap.

 

[travis613]

He told me that this one could possibly be older than the first one and it was just masked by the sheer size of the first one.

 

[Sailorluna]

I have had them miss one before. It sucks but it happens. I imagine it is hard for them to find the ones that have not made it to the skin yet. Did they do a CT or MRI at all?

 

[justbreathe8]

Omg you are going through so much, I'm sorry you have to deal with this!! For me, he thought I had one fistula, then it never got better after the surgery and then he found another fistula. Then, he found a third that he said he missed because the other one was so inflamed. So it could be possible that you Had more then one and now it's showing up. As for antibiotics, I wasn't give antibiotics for 3 of my 5 surgeries. So that part could be "normal" maybe he thought he had cleaned out all of the infection. I hope this next surgery helps you! Hopefully he puts a seton in so that everything can drain out of there and calm down

 

[travis613]

Sailorluna-Yes he did. The way he explained it me is that this one is right below and to the left of where the first one was and could actually have been masked or covered by the first one due to its size.

 

[travis613]

Justbreathe8-Thank you so much for your kind words and encouragement. He told me that he probably will put a seton in but as it was before he would have to wait until he gets in there to decide the route to take. He told me that he absolutely could not do another advancement flap, which I was honestly relieved to hear. I thought the hemorrhoid surgeries I had were bad, the advancement flap surgery was just brutal. In the beginning he told me to expect to be off work for 2 wks it will be 7 wks this Thursday the day of my next surgery.

I almost feel embarrassed getting on here complaining about a second surgery when so many people like yourself have had to have many many more. When was your last surgery? Did it work?

 

[justbreathe8]

My last surgery was july 1st (6 weeks ago) and it was actually the advancement flap surgery. ANd yes, thankfully , my doctor confirmed on friday that it worked. The recovery for it was about 4 weeks. But I will say, that when you have a surgery that "works" the recovery is MUCH shorter then if you have a surgery and there is still something wrong. For example, my first 3 surgeries, there was still something wrong that the surgeon didn't know about so I never fully recovered. After the 4th surgery, he found the last fistula and the recovery was about half the time because my body could actually heal since all of the problems were taken care of. The last surgery, the flap, was done because my body had calmed down and the 3 setons were ready to be removed because the infection was FINALLY gone

 

[travis613]

I'm so glad that it has finally worked for you. I couldn't imaging the stress involved with what you have gone through. My surgery was the week before yours and I was still in absolute agony 5 weeks in. I kind of knew a few weeks ago that things just weren't going how they should. Before this I thought I knew pain and could handle it. Now after going through this, I know I have never really known pain before and I'm not nearly as tough as I thought I was that is for sure. Finally finding this web-site has been a god send. More than the pain the humiliation, worry, stress and anxiety involved with this has been what has really beat me down. Thank god I have such a strong and wonderful wife. She has gone above and beyond that is for sure. But she has to work and I have had far to much time alone to worry and feel sorry for myself. Finding this web-site and being able to talk with people such as yourself and gain a real perspective on things has made the last few days so much easier. As soon as I got home today I posted and I cannot thank you enough for responding and sharing your experiences with me. It is truly and greatly appreciated.

 

[justbreathe8]

Yah I agree, you never really know pain until you have to deal with all of this mess. And my husband has also been AMAZING. He has picked up the slack and encouraged me and was there for me telling me that even if this doesn't work, we will get through it. I think without him I would have given up. And yes, my husband went to work and I was left alone to worry and cry and read this forum. It has helped me a TON as well. I hope you get everything figured out. Just keep hanging in there. It can't last forever, right? Even though each day seems like forever I know

 

[travis613]

Thank god for great spouses!!! I keep thinking exactly what you stated above-This has to end at some point. This site is a god send that is for sure. Before june of this year I don't think I had ever even heard the word fistula much less known anyone to reach out to that has dealt with it. Finding this forum and being able to gain some real perspective is truly a blessing. Thank you again for responding and sharing your experiences with me, it has eased my mind quite a bit and at this stage in my journey through this nightmare that is priceless.

 

[Sailorluna]

Have you tried a heating pad? When the pain is bad if I can't get to a bath the heating pad is the best. Feels funny sitting on it but it really can help. Also - if the surgery leaves you swollen don't be shy about pulling out the frozen peas or other veggies - just be sure you wrap em so you don't hurt yourself with too strong of cold.

The other thing is calmoseptine or other barrier creams. When you get to the point where the majority of the pain is from drainage bothering your skin you may want to explore those options.

 

[travis613]

Thank you for the advice