Guess I'm joining the fistula club

[Sybil Vane]

Just saw the surgeon and my abscess is actually a fistula and I have to have a seton placed. Is this an out-patient procedure? I forgot to ask her and just assumed that it was.

Also, can you develop a fistula if you're in remission or is it a sign your Crohn's is active?

 

[exit4]

Yes, seton placement is out-patient procedure, not a big deal at all, for me it was a very little discomfort and kept my abscess draining well. The goal is to keep it draining so the outside opening stays open and not closes and traps all that infected stuff inside.
With Crohn’s, it may mean that there is an inflammation present and Crohn’s is active with just that symptom.
BTW. You can have a fistula and not have Crohn’s.

 

[Sybil Vane]

Thanks, Exit! I've felt like my disease has been active and my GI has told me it's not even though I have inflamed joints, anemia, fatigue, awful D, etc. Lately, the pain has moved down south and I developed the abscess and fistula a few months after the rectal pain started. My surgeon is saying that I have a fistula because my disease is not being controlled, so I was curious to hear what others said since both doctors have differing opinions.

She said she would have to remove some tissue and infection so there will be some cutting involved. I'm not really nervous about the surgery, just more depressed that Crohn's has given me one more thing to worry about.

 

[aloe]

I just had a seton placed in a fistula too. It was outpatient, and not that bad (though there wasn't any cutting involved with mine).

The doctors did tell me it meant I was in flare-up, though it was pretty obvious by my symptoms and some narrowing occurring again in my ileum. It certainly sounds that way for you. It was also explained to me that it was evidence I have "perianal Crohn's" now, and that it had become more of a serious case of Crohn's with the fistula because now it's considered "penetrating" Crohn's.

You may want to get a second opinion. I was getting lots of misinformation from my local GI doctors, and they seemed very intimidated and mystified by the disease, so I asked to be referred to a Crohn's specialist. I am now seeing a super knowledgable doctor at Stanford who only sees Crohn's patients. It's made a world of difference.

ETA: I see now you have gotten two opinions, but I would still say get one from a Crohn's specialist if possible. I was seeing the several GI doctors and the best surgeon in my area, and they were still all giving wrong information I later found out.

 

[AlliRuns]

Thanks, Exit! I've felt like my disease has been active and my GI has told me it's not even though I have inflamed joints, anemia, fatigue, awful D, etc. Lately, the pain has moved down south and I developed the abscess and fistula a few months after the rectal pain started. My surgeon is saying that I have a fistula because my disease is not being controlled, so I was curious to hear what others said since both doctors have differing opinions.

She said she would have to remove some tissue and infection so there will be some cutting involved. I'm not really nervous about the surgery, just more depressed that Crohn's has given me one more thing to worry about.

The cutting can make it more painful depending on how much and where. I had hardly any pain after my first surgery, but my second, I was in so much pain that rolling in bed was an endeavour.

 

[Catherine]

My daughter developed a small bowel to small bowel fistula while appearing to be clinical remission. GI believes the fistula means she has active disease. She had no symptoms a part from two weeks of slight stomach aches are beginning to have milk again even this symptoms when away after removing milk again.

 

[annawato]

Hi Christina, sorry to hear that the abscess has turned into a fistula. You did suspect the crohn's was active again so I'd go with your gut feeling and not your gI's. I think its entirely possible to have normal bloods and still have active disease. Though of course I don't NO this. ( ) Has your disease been in the rectum/anus before or is this new for you? my disease has always been in the TI although I have had anal and throat abscesses so I was wondering if you can develop there later or is it generally localised to one area. Even with everything crohn's has thrown at me the thought of anal fistulas etc fils me with dread. Altough I suppose if I keep this ileostomy its not likely to happen. There my silver lining.

 

[Sybil Vane]

My disease has always been in my small bowel throughout my jejunum and in my ileum. I've never had any symptoms of it being any further down, but beginning in December when I called my GI before Christmas, desperate, I had throbbing rectal pain. No bleeding with the D, though, so when he said I wasn't in a flare even though I had this pain, fatigue, constant D, and red, swollen joints, I didn't press it. Now I wonder if the rectal pain that's plagued me since December was this fistula or more forming or evidence of disease.

Thanks, Aloe, for the advice to see a Crohn's specialist. I saw one in 2011 and had an IBD surgeon. They are 4 hours away from me and not fully covered by insurance so I had to pay over 10 thousand dollars for the experience before insurance kicked in. Now that I'm not working, I can't afford it.

 

[annawato]

I'd say that rectum pain was definitely that fistula forming. I'm curious though why your GI said you weren't flaring? Was it purely cos you didn't have any bleeding? Cos I have never had bleeding and definitely have had flares. It seems odd for him to say that given the symptoms you were having.

 

[Sybil Vane]

It's because my sed rate wasn't elevated. I was anemic, but based upon the blood work he had me come in for, he said it was my IBS that was bothering me. I had swollen joints, fatigue, and mucus. I've given up on doctors at this point. It happens to me all of the time. If my sed rate isn't high, they say I'm in remission.

 

[Ihurt]

Oh I hear ya there. I am not even diagnosed, but I will say that my gastro doc and a few others that are in his department also say that a person with a normal sed-rate or C-reactive protein level does not have crohns or would not be in a flare! He also said C-reactive protein is a better test than the sed rate when checking for inflammation. But yet on this board it seems there are lots who have normal blood work and still have crohns!!! WTH is wrong with these doctors??? I mean shouldn't they know this??? Another reason I dont like to go to the doctor. They just never seem to know much and a lot of times the end up making a person worse off than they were before they went to the doctor!!!








Sybil Vane;605857]It's because my sed rate wasn't elevated. I was anemic, but based upon the blood work he had me come in for, he said it was my IBS that was bothering me. I had swollen joints, fatigue, and mucus. I've given up on doctors at this point. It happens to me all of the time. If my sed rate isn't high, they say I'm in remission.[/QUOTE]

 

[AlliRuns]

Oh I hear ya there. I am not even diagnosed, but I will say that my gastro doc and a few others that are in his department also say that a person with a normal sed-rate or C-reactive protein level does not have crohns or would not be in a flare! He also said C-reactive protein is a better test than the sed rate when checking for inflammation. But yet on this board it seems there are lots who have normal blood work and still have crohns!!! WTH is wrong with these doctors??? I mean shouldn't they know this??? Another reason I dont like to go to the doctor. They just never seem to know much and a lot of times the end up making a person worse off than they were before they went to the doctor!!!







Sybil Vane;605857]It's because my sed rate wasn't elevated. I was anemic, but based upon the blood work he had me come in for, he said it was my IBS that was bothering me. I had swollen joints, fatigue, and mucus. I've given up on doctors at this point. It happens to me all of the time. If my sed rate isn't high, they say I'm in remission.

[/QUOTE]

It really depends on the doctor in how much they know. Not all docs are the same. I have had bad experiences which have led to a delay in my diagnosis because they were docs who had been around forever, probably were not that current in their research, didn't think outside the box, or just had way more patients than they could handle (really common in some areas of rural Atlantic Canada). My current GI is in a teaching hospital and he thinks outside the box and was committed to figuring me out so I could get treated properly.

Having appointments at a teaching hospital can be a pain, but if it has taken a long time to get a diagnosis, it's worth the extra time.

 

[Sybil Vane]

I saw my GI today and I was pleasantly surprised by how serious he is taking this new evidence of active Crohn's. He apologized for Christmas and said he should have brought me in to examine me instead of relying on what the nurse passed on. He's adding Imuran to my Humira and insisting I go back to weekly shots. He's very in touch with the research and it's why I chose him when I switched so I was surprised with his non-reaction to my flare over Christmas. I feel like he's completely behind me and going to help me through this. I'm now experiencing blockage pain that comes and goes so I'm afraid I'm flared throughout the entire length of my intestine even though this is the first time I've had perianal disease. I'm painfully swollen in that area and it's hard to sit down. I almost passed out during the rectal exam I had, yesterday with the surgeon and she had to stop. My GI examined me today and was super, super sympathetic which almost made me laugh because the look on his face was so funny. Yeah, it's not fun having a butt problem!

 

[annawato]

Well I'm glad your faith in your GI has been restored but sorry it is at the expense of your health. It will be such a relief for you to at least get this abscess seen to.
p.s. loved your latest blog as usual - I could particularly relate to waking up choking on the contents of your stomach!

 

[myriahdawn]

Just saw the surgeon and my abscess is actually a fistula and I have to have a seton placed. Is this an out-patient procedure? I forgot to ask her and just assumed that it was.

Also, can you develop a fistula if you're in remission or is it a sign your Crohn's is active?

We really are so close to the same situation... Mine was out pt, but it took me a while to heal. And, I can't seem to get a straight answer from a doc about the remission vs. active thing. I really thought I was in remission, meaning no crohns symptoms and then WHAM a fistula. He basically said, "even if not active, a fistula usually means more". GREAT!!! He now has me on Humira and it is helping a lot.