Perianal Crohns??????

[Nixie128]

I'm kinda confused. And super frustrated. I was dealing with a colorectal surgeon for months, she's the one who diagnosed crohns after doing a colonoscopy. I have a horrible fistula which wraps around my anus, and drains a lot of pus. It's nasty, so she did a little surgery on it to help it drain. She is amazing. I moved over to my gastroenterologist and he isn't looking at her colonoscopy...he sent me for a small bowel series xray which apparently was all good.. He said in his report "no sign of crohns".... My family doctor is the one that read his report. So she was all excited... Me not so much. Then I asked... So does that mean I don't have crohns!?!? She said no, scoffed at me, and said I only have crohns in my anus. I'm flipping confused.

A colorectal surgeon does colonoscopy, and tells me to she saw active crohns.. Everything showed crohns apparently. I'm told she took polyps and samples and tested them.. Unless I misunderstood her..She's a phenomenonal surgeon and in high demand. But this guy basically says no. I'm just confused. Do I or don't I? Is there such a thing as perianal crohns? Anyone with any ideas or help, that would be so appreciated!!! This new doc is sending me for another colonoscopy in a month (even though I just did one in November) and then I'll meet him again to go over things. But can anyone shine some light on this.
Thanks so much. This is all so new to me.

 

[Tuff]

You have Crohn's and the colonoscopy showed active disease in your large bowel. The small bowel series xray showed no sign of disease, in your small intestine. I don't have active disease in my small intestine either, but that could change in the future.

 

[Nixie128]

Thank you. The way my family doc made it sound was that I didn't have crohns at all, and then I was thinking, well then what the hell is wrong with me!! Lol. This may seem like a dumb question, but, what's the difference between crohns in large bowel and not in small intestine? Any info you can give me?

 

[my little penguin]

No difference just location
Crohns can affect anywhere from mouth to anus .
It can also change location over time .

 

[Fernando1]

I have never heard of Crohns just in the anus. The fact that you have a fistula indicates that the other end started in your colon, fistulas have two ends.

I have Crohns in both the small bowel and colon. I also have Perianal Crohns and itches like crazy. The whole area is inflamed and raw, bleeding sometimes.

That fistula needs to start somewhere besides your anus and your other possibility of disease is ulcerative colitis. Both are clearly seen in colonoscopies.

The difference between small intestine Crohns is that you can get strictures in the small intestines which lead to blockages. In the large bowel the area is much wider where strictures are rare and the most common problem is ulcers and abscesses.

A small bowel Xray may not detect strictures in the small bowel if there is no narrowing there, however once the barium moves to the large intestine for sure you will see "flares of light" showing the beginning of the fistula. Don't understand how they can see the outside part of the fistula but not the inside.

I hope that the doctor that is doing your new colonoscopy is different than the previous doctor. Something does not sound right with the first diagnosis.

 

[buttER]

As I undertand it:

When a doctor performs a procedure then a report is written afterwards. The report only comments on that procedure (in your case the small bowel xray).
If the procedure was done to rule out or confirm a diagnosis (such as Crohns) then there will be a comment to that effect in the report. In your case if Crohns was suspected and that was the reason for the procedure, "no sign of Crohns" was written - based only on the results of that procedure.

But yes, it is very confusing. I also thought I had contradictory reports because 2 doctors said I had IBD and the final doctor said no - but it turns out he was only looking at the biopsy results and nothing else. Unfortunately he also had the say in my treatment.....

If in doubt, ask (and ask the one your trust, not the one you dont).

 

[Nixie128]

Okay, unfortunately the doctor I trust is 2 hours away from where I live and I'm not able to ask her questions. As it stands right now I don't trust my GI but I've only met him once and he's not winning any awards in my book just yet... We will see about him. My family doc was acting like this was the best news in the world that I don't have crohns from that xray of my small bowels but to me, I didn't really feel the joy she felt. I still have a "very complex" fistula which is sucking the life out of me and causing me immense pain... Thats what I care about...i want it fixed. So telling me my small bowel series xray was clear of crohns doesn't change my fistula at all so I didn't feel the same joy. Maybe I'm being whiney and hard to get a long with but I wish these doctors would just hurry the hell up and put me on something to start treating this mess I have going on.

 

[buttER]

Maybe I'm being whiney and hard to get a long with but I wish these doctors would just hurry the hell up and put me on something to start treating this mess I have going on.

I agree. I don't know about how to get fistula treatment, have you tried putting something out on the fistula thread?

 

[Nixie128]

The first doctor to do my colonoscopy and ultimately tell. Me I have crohns was a colorectal surgeon who is in high demand where I live. She was absolutely amazing. Now this new doctor, a GI, is telling me my small bowel is good to go, and he wants to do a new colonoscopy on me April 24th. The fistula is very complex, it wraps around my anus and has many branches. I have done 2 MRI to try and find the end of the fistula to no real success. During surgery on the fistula they filled the track with fluid to try and find the other end, which again was not successful. They put in a mushroom catheter in the fistula to try and help it drain so it can start to close a bit, but it fell out eventually. The colorectal surgeon was able to put in about 10 inches of the tubing.... Thats crazy long and it still didn't reach the end of the fistula. It's a mystery to every doctor I've ever seen. I've had surgeons and specialists send me away because it's "beyond their abilities". It's really fun lol. As it stands right now, I'm not sure where my crohns is. All I know is, I have a bad fistula, I had a massive abscess, and my anal region is extremely red, swollen, irritated and my bowel movements are extremely thin, like a pencil, and if feels like glass. Thats what I know and that's what I want treated. Lol

 

[buttER]

By the way, do you have all the test results? You could ask for a copy of all reports, plus pictures from the colonoscopies.

If you have everything together it might be worth seeking out a new GI and presenting the evidence. Although it sounds like the best thing to do would be to travel the 2 hours to the doc you trust and try to develop a treatment strategy - and ask if they can recommend a GI close to where you live.

Good luck!

 

[Nixie128]

I agree. I don't know about how to get fistula treatment, have you tried putting something out on the fistula thread?

Yes, I've posted there, got some good help there. Thanks

 

[Nixie128]

I don't have all the test results. I actually just started telling the doctors I want copies of all tests and everything the wrote about me and my care. My family doctor is going to get copies of everything for me and send them my way. I really want to know what's going on and see it all for myself. I need to be informed.

 

[Robrich]

Hi nixie read your post as I sit in the waiting room for my CRS. I have PA fistula with one seton and may need another. Very strange they can't find the source of your fistula.
The reason your family doctor was happy about the small intestine no sign of CROHNS is that is a very troublesome problem. I have only large bowel and perianal crohns and for many years the colon has been crohns free and the only signs of crohns have been in my rectum and anus. Believe me be relieved you don't have small bowel crohns it is a nightmare compared to the fistula.
If they can't find the source of your fistula maybe you only have an abscess, But unlikely
One of your doctors either the family doc or GI needs to take charge of coordinating your diagnosis and treatment.
Your options include anti biotics to get the infection under control, An EUA with possible seton placement, but sounds like they tried that already.
If it were me I'd ask for Flagyl/cipro and go from there.

 

[Lady Organic]

From what I understand, you dont have crohns in the small bowel, thats one good news. The new GI wants a colonoscopy for next month, that is perfect! A GI having a new patient will most likely want to perform colonoscopy to evaluate themselves their new patient. He cant simply give you a treatment according to what another dr from other hospital saw... 4 months ago. he wants to see for himself and that is ok. He will be able to see if the disease activity the surgeon saw is still present or not and act upon your actual situation of that day. The previous colonoscopy reports you will get will tell exactly how many centimeters the dr saw affected with the disease and this will be good to see the evolution or regression of your disease activity. (Drs must be precise when writing down colonoscopy reports.) As another member posted, and as you expressed it, it is wise to have all reports on hands. This can help understand the disease over the years and it is especially important if we change doctors along the way, which is eventually inevitable. let us know how it goes.

 

[Nixie128]

I took flagyl for 3 months straight with no help at all for the infection I have constantly draining from my open fistula. It constantly drains nasty stuff and nothing has helped it yet. Guess I'll wait and see what happens with this new colonoscopy. Hoping to get some relief. It's a mental mind F having pus drain from an open wound between my butt cheeks 24/7 since July 7 2014

 

[buttER]

...he sent me for a small bowel series xray which apparently was all good.. He said in his report "no sign of crohns".... /QUOTE]

Does anyone know if a small bowel series xray is sufficient to rule out Crohns in the small intestine?

 

[Tuff]

Nixie I know what you're going through. I had the same thing. Mine turned into a horseshoe abscess around my rectum, and the pain went on for about six weeks until it burst. So if you're draining, that is a good thing. You don't want that to turn into an abscess. I was on all the drugs, Cipro, Flagyl. Azathioprine, Pentasa, nothing worked until I got on Remicade. Perianal Crohn's is hard to treat. I currently don't have any fistulas, when I started Remicade I had at least six. I hope you can find a med that works for you. In the meantime, wear pads, and sitz baths can help. Use moist wipes and try to keep it clean.
:ghug:

 

[Nixie128]

Yea with this Fistula which has completely wrecked my skin on my butt crack (I know.. Such a technical term lol sorry) I only use wet wipes... The thought of using regular toilet paper makes me cringe. Lol!!! I'm hoping someone will put me on something to treat this. The fistula once was a massive abscess. I had that drained in the hospital twice and it was packed by a home nurse for 4 months to let it drain. Then in December I had surgery on it to put the mushroom catheter In it to keep it draining. The catheter fell out now so now I'm just left with a hole in the fistula which pus drains from. Hoping that hole stays open or else I'm in bugger trouble. I meet with my GI April 30th for results of colonoscopy and what not and I imagine I'll have a lot more information then. I hope.

 

[Lady Organic]

I use a shower-bidet since a couple of months. its WONDEFUL! No more waist and no more $ spent on toilet paper. And I think this would be a great tool for people with fistulas. I dry with small pieces of towel I put in the washing machine afterwards.
I bought this one : http://www.homedepot.ca/produit/bidet-cleanspa-luxe-de-poche/825570
its the best and these bidets are very easy to install! Anyone with minimal plumbing knowledge can fix it.

 

[24601]

Does anyone know if a small bowel series xray is sufficient to rule out Crohns in the small intestine?

I would say no. The small bowel xray series will tell you if there is any narrowing caused by scar tissue or inflammation (and also I suppose any obvious fistulas although I don't think this test is the best at detecting fistulas) but it won't tell you if there are ulcers or other signs of inflammation without narrowing in the small bowel. Your best bet for that information would probably be a camera pill - and at least it looks like that should be possible since there were no narrowings seen in the small bowel series, so it is useful information just not quite as exciting as your family doctor seems to think.

An MRI could also provide useful and complementary information about fistulas around the small bowel and extent of inflammation through the bowel wall. Hopefully your small bowel is Crohn's free but I don't think they can be certain of that from the small bowel x-ray series alone.

 

[Nixie128]

I've had two MRIs for the fistula. They just can't seem to figure out where this thing goes to. They say it's complex, worst they've ever seen (4 surgeons and a colorectal surgeon). I'm glad the small bowel series shows that my small bowel is good, I'm glad to hear that, but what I'd rather hear is them telling me what's wrong and how they plan on treating it rather than just what it's not. Lol I know they will get to telling me what's wrong etc but I'm impatient because I'm in a lot of pain.

I totally want to buy the little bidet thing, that would do my bum wonders!

 

[Lady Organic]

Go for it! You can adjust water pressure to your liking. For royal treatment you can buy an adaptor to plug on warm water and have it the temperature you prefer. on sale too on the website. (I didnt buy this part and use cold water only)