fistula

[cdogtom]

this is what i think i have now ,doc wants to do a cystagram but i dont want to do just yet due to taking plavax a blood thinner ....cant stop until nov. for any operation.
i think to wait until november for the cystagram and if they do find one should i get it fixed or just live with it ?
( i have a Hartman cuff )
while voiding i am getting discharge from my rectum

anyone with experience ?

[oliveoyl]

Hi cdogtom
I am living with a fistula from small bowel to bladder. My urologist (whom I no longer see) gave me a cystogram and started talking about a urostomy. A surgeon whom I trust said that I am no longer a candidate for surgery and that I could live with the fistula since the small bowel is relatively clean. When I get symptoms of a bladder infection I take antibiotics and they go away. To avoid becoming resistant to antibiotics I can switch back and forth from say, Cipro to Nitrofuratoin. I haven't had a UTI since last March, so about 5 months. I am definitely going to live with it and avoid surgery.

Cystograms are awful, and I would think they would be even more awful to go through if you are a boy.

Olive

[cdogtom]

thank you oliveoyl and as a boy it is ,i learned this after a failed bladder stint and in the hospital for a week and had to have a catheter placed as i was bleeding front an back

[To Dream a Dream]

Crohn's disease is notorious for causing them & I had a bottom full from the second major resection in 1969 to 1977 when they did the first ostomy & ripped out my anus/rectum in two separate surgeries. (Yes, I mean ripped. Something went wrong & I surfaced from the anesthesia & was unable to tell them. I lay there in the dark feeling it all. Like being torn apart & burned. Finally, when I went into shock, that grabbed their attention. Even now I hesitate to remember it lest it bring back the nightmares I had afterwards for over twenty years. I woke up on a vent in PAR where they spent 3 hours trying to wean me off of it. "Breathe! Breathe!" They'd yell as they clicked the machine off & I couldn't for the life of me. I'd start to fade away & Click . . . they would bring me back & it would start all over again.) Oh, well. So far, the fistulae have not returned. Thank God.

[BillGK]

this is what i think i have now ,doc wants to do a cystagram but i dont want to do just yet due to taking plavax a blood thinner ....cant stop until nov. for any operation.
i think to wait until november for the cystagram and if they do find one should i get it fixed or just live with it ?
( i have a Hartman cuff )
while voiding i am getting discharge from my rectum

anyone with experience ?

I have a Hartmann because, at the time of my initial surgery, they thought that they were going to be able to re-connect me. Then I developed a fistula that seems to go from the proximity of the cecum to the top of my stump. I’ve had it for about 10 years. So I have a ton of experience with what sounds to be a situation not unlike yours.

When they discovered the fistula(s?) they told me that if they reconnected my plumbing it would be a complex procedure and, due to where they thought the fistula was, there was a very good chance that in attempting to take care of it when they were putting me back together they might hit the major blood supply to the large bowel. If that happened I would wake up without a large colon and with an ileostomy for life. This was the opinion of a highly regarded colorectal surgeon at Mayo Rochester. So, the surgeon felt that, since I was getting along fine, it might be best to leave well enough alone. Which is what I’ve done.

A few years later I saw a colorectal surgeon at Mayo Arizona. She said that she could find no evidence on the original scan, taken in Rochester, of any fistula. So we had a disagreement among the surgeons. She looked into my rectal stump and colon and found no fistula. So she felt that a reconnect would not be complex.

I know that I have a fistula. I pass air out of my rectum from time to time. You don’t pass air unless there is a source of air, and the only possible source is a fistula. Also, when the fistula is open I get small amounts of clotted blood and the like.

Now, let me discuss two different rectal problems that I live with. First is the fistula. It opens and partially closes. If I sleep on my right side I will always get air coming out of my rectum; sleep on my left side, seldom air. If I take nsaids for an extended period of time - I’m doing this at the moment, actually, to settle down a sore jaw - the anti-inflammatory effect will cause the fistula to be more open and pass more junk than normal. A bit over a year ago I had Synvisc injectons in both knees, and had some pretty bad swelling and pain due to the Synvisc itself. They gave me a steroid shot in each knee, to quiet things down. Before long the fistula became very active, lots of draining. Cortisone is a powerful ant-inflammatory, and even though the injections are local, there is sytemic leakage. So the fistula was very active for a couple of weeks, then quieted down as the cortisone effects decreased. Sometimes the fistula will seem to close, entirely. This isn’t necessarily a good thing, and sometimes I will get a bit feverish, and it may correlate to things going on with the fistula. Then after a bit it seems to open up a bit and things get pretty normal. I have diverticulitis, and any thickness of stool really gets painful - nothing to do with the fistula. When this happens I’ll take plenty of Miralax, making my output very thin, and this willl cause a lot more flow through the fistula. Then, when I let the output get thicker the fistula slows down.

So, relative to the fistula, it’s a thing that has taken me years to piece together the evidence of the various situations, and understand what is going on. In the end, I continue to live with it, and it is no big deal. The constant flow of small amounts of blood, along with some blood clots that form and pass out the rectum, make me get concerned about the possibility that a long term condition like this can lead to a malignancy. The good news is, that according to my doc, long term fistula activity does not create a higher incidence of cancer.

The second rectal problem is diversion proctitis. My stump is at least 6” long and is in a constant state of colitis, which can get very uncomfortable. I manage it by doing daily fecal transfers. I transfer stool from my output into my rectum. Stool contains short chain fatty acids, which is the key nourishment that the bowel needs to not have colitis. I have tried to manage the condition with Canasa and steroidal suppositories, with mixed not real effective results. The fecal transfers are great for keeping things under control and allowing me to feel normal. Everytime I mention what I do to a new doctor, eyes get big and I am told “I’ve never heard of that before, and by all means keep it up because it makes perfect sense.” My technique took time to develop, but it turns out to be simple and quick and clean, and I do it religiously, normally morning and evening.

So I have two very differnt things going on in my rectum. I could do elective surgery. It would be a big surgery. It would eliminate the fistula and shorten the stump. I would never want to be reconnected. I have elected to do nothing. When we start doing repeated abdominal surgery we are likely to be trading problems that we know for problems that we don’t know. Not for me, thank you. I would only do surgery if my condition deteriorates to the point where my home treatments don’t work. As things stand today, the above things I’ve described may suggest that I’m a semi-basket case, physically. But this isn’t the case. I am 77 years old, carry a mid-single digit handicap, and was still walking the golf course until my knees finally wen full bone-on-bone last year. Life it good, I hope to continue to be able to manage my problems conservatively and avoid major belly surgery.

[cdogtom]

thanks to all ,billgk,olive ,and dream , i have agreed to have a crstagram

[To Dream a Dream]

Please know I am keeping you in my prayers for this. May God bless you.

[cdogtom]

Please know I am keeping you in my prayers for this. May God bless you.

Thanks Dream prayers always help

[cdogtom]

my cancer doc ,who i trust more than anyone suggested to do the Cystogram now due to the covid may be bad enough to stop any elective operations...
i think i spelled it right this time ....

[To Dream a Dream]

I agree with your doc, Tom. God speed.

[cdogtom]

i did the cystograf they tried twice to put the catheter in to no avail ,not doing that again ... ill do what BILLGK does ,leave well enough alone thanks Bill....

[oliveoyl]

Hi cdogtom
Sorry you had to go through that, ugh. Hoping everything goes good for you from here on out. I'm living with my fistula, and it has been good and relatively smooth so far. Good luck.

[BillGK]

Tom, are you sure that your rectal discharge is entirely from the fistula? You have a Hartmann. They are long and possibly prone to diversion proctitis. The discharge could be a combination of fistula and diversion proctitis...? I don't know how to tell, for sure, but if you are like me proctitis tends to present with things like abdominal cramping and urge to void the rectum. Basically, proctitis is an inflammation. If they went up your rectum, looking for a fistula, they would have seen inflammation.

The point is, if you have some diversion proctitis there are ways to treat it and hopefully reduce the output.

[cdogtom]

Tom, are you sure that your rectal discharge is entirely from the fistula? You have a Hartmann. They are long and possibly prone to diversion proctitis. The discharge could be a combination of fistula and diversion proctitis...? I don't know how to tell, for sure, but if you are like me proctitis tends to present with things like abdominal cramping and urge to void the rectum. Basically, proctitis is an inflammation. If they went up your rectum, looking for a fistula, they would have seen inflammation.

The point is, if you have some diversion proctitis there are ways to treat it and hopefully reduce the output.

Thanks i ll look into that