I start my prep for my colonoscopy tomorrow. I have had this fistula since mid September. I have tried every method to heal it without Sx and nothing has helped so I am going through the steps as far as tests so that my colorectal surgeon will have a better idea of what is going on.
I have found that the fistula drainage increases and decreses for no apparent reason some days while even on TPN it would be like a volcano...it is how the nurse got my stool sample for the mandatory VRE and C Diff tests they do....it is how they got the sample the time before as well. The TPN just changed the viscosity of the feces coming out. In the past few weeks I have been back on Fentanyl the 50mcg patch and dilaudid every 4 hours as needed. I have noticed that this combo has caused difficulty in passing stool. I have been on this combo before post op and there was no C issue although I did feel that way 1 day while recovering from my reversal Sx and in the hospital so they had me take colace...later that night after walking I had no problem going.
These past few weeks with me also going back on my iron I had noticed more C issues so I would take colace and some days even take the colace with the laxative in it. As of Saturday I stopped my daily vitamin and iron as instructed in my scope prep paperwork. It is strange I have days where I have accidents in my pants where it just comes out with out even pushing then I have a day or 2 when I dont go.
I had to use a suppository Sunday night I was having severe cramping in the area where I know I am flaring and it appears as theough that is the general location of my fistula. The fistulagram showed that it is approx 10cm long and extremely narrow about the width of a pin head. I find that in the past couple of weeks when the feces coming out of the fistula is low to non existant at least because there is pus and blood that comes out of it too and at times there is more of that than anything else. It has come close to closing b4 and I get the blood and pus out and nothing else then bam it is like a volcano again.
I used the suppository on Sunday I did have a BM within an hour after using it. I later went to bed and was watching TV then had the urge for D and ran down the stairs in just enough time. I have been sleeping with a heating pad recently from the pain and using a hot water bottle during the day since it is more portable. I did not have a BM yesterday but had the morning nausea then proceeded to vomit at approx 10am. I had taken my meds with water at about 9 about 10 minutes before I vomited I had a little piece of graham cracker and a sip or 2 of gatorade. I still had not had a BM by 3 this afternoon. I was typing on here to some post and passed what I thought was just gas but made it to the bathroom before it got on my underwear.
I then used a supository since I couldnt push but knew it was there I went a small amount. My fistula I can tell has started becoming more active since I had not had a BM in over a day. I find that is what occurs is that it drains more when I do not have a BM whether it be a BM I urge on with suppositories or one that comes as a natural urge. I am unsure if stool is coming out at this point since the gauze I use costs quite a bit if it doesnt leak through I try to only change it 2 times a day. It has been passing gas though it practically knocks me out with the foul odor. I can at least leave the room to pass gas but this thing has its own mind.
Do you think it sounds like I may have another stricture so soon after my surgeries and being that it is in my colon rather than my small intestine as shown by my fistulagram. I had never had CD in my colon before just my ileum. The pain set in back in July I had been on Pentasa as a preventative and when my joints flared my GI scripted 3 months worth of entocort and told me hold off as long as I could on it. I was still having D post op at that point being that my sx was in june. In August was when the joints became so bad I could barely walk and my nana passed away so I had my pcp call in the medrol pack for my joints so I would at least be able to walk etc for the ceremonies at the wake and funeral. I did not feel any change in my abdominal pain or D so I made the assumption it was just that my insides were still adjusting and were not ready for salad which I had been able to eat with no issues in the past.
I started the entocort and I started tapering under my GIs advice and 3 days later when I had now been on 6mg of entocort was when the fistula popped through. I tapered off of it completely he said it wasnt doing anything and this was while we were waiting for my Humira to get approval after my docs authorization.
I am just so confused and lost can a stricture happen so fast? The radiologist showed me the pics he took from the fistulagram he did tell me that the pics I was looking at were magnified. That was when he told me the approx length and location it appeared to come from. I said my doc thinks it is colon not small bowel so he injected more and found it is in fact the colon looks like it may be right where the small bowel got connected to my transverse colon after my surgery.
I am scared, confused, frustrated, aggrivated and probably more
Dx with Crohn's 1987, symptoms as early as 1984.
Temp iliostomy February 2007, reversed June 2007, Ovarian cysts, migraines, allergies (incl food allergies) , oral allergy syndrome (diff than true food allergies), Asthma, Gall Bladder removed 1999, Inguenal hernia 1987