New to the Forum, but not Crohn's

Hey everybody! I came across this website when I was looking on another forum, so I thought I would check it out. I am currently 21, and have been dealing with crohn's my whole entire life.

I am currently doing pretty well with crohn's, but I've been through it all. Any drug you can think of, I've been on it. Remicade, Humira, Methotrexate (both pill and injections) high doses of prednisone, and a few others. For me, it felt like at first everything would work, but then it was almost like I got immuned to them so it seemed they stopped working (whether that be the case or not)

I have however been living and dealing with a fistula for the last few years, and I'm just trying to gain the courage to get it taken care of. It's pretty big, but for the most part I dont have any problems with it, aside from the drainage, and its presence, but every here and there, it really hurts for a day or two until the pressure can release again. I guess one time when I went to the hospital for it, the doctor wanted to just lay me down, and take a scalpul to it in ER, and it has freaked me out ever since. I wouldn't let him do it.

Anyways, I think this website will help me, and hopefully I can help others too. I'm getting into excercising and working out to bulk up, and try to gain some of my body back, so hopefully other people have some stories with gaining weight/bulking with crohn's. When I was really sick, I went from just under 150lbs, to 118lbs in literally just a few months. I'm currently pretty steady around 158-160lbs, and on no medicine whatsoever.

Anyways, sorry for the really long post! I look forward to reading what people have to say on this forum

Hey K!

There's a couple things you should know before you think about fistula surgery w/crohn's. Most doctors avoid any kind of cutting or laying open of fistulas, because patients with Crohn's have terrible problems healing... down there. You should discuss this with your GI. A lot of patients receive what is called a "seton", which is a thread that loops through your bum hole, the fistula, and out each end. It's tied on the outside of your body, and its meant to keep the fistula from closing/reopening and the pressure from building/releasing. Talk about this with your doc.

Welcome to the forum

I've been looking for a new doctor to talk about this with, but I've moved a good distance from my old doctor I was using. The "doctor" that wanted to just cut it open was a general doctor in the ER one night I ended up there. I am aware that fistulas form from the inside and pertrude out, rather than an abcess that is an external problem

I let a general surgeon I met in an ER cut me. Now my fistula is irreparable and it's been draining 7 years so far. NEVER let a general surgeon operate on Crohn's related issues. Find a colorectal surgery specialist ASAP.

Well I've been dealing with it for a few years already, so I'm not in a HUGE rush to get it taken care of. I want to find the "right person for the job" I don't want just any random doctor helping me deal with it. I want somebody I can trust

muppet is right. General surgeons should not be allowed near bottoms! Bottoms are not general. They are very sensitive. I had a general surgeon look at my abscess before my colorec. Never again, will I allow another person to touch me so insensitively.

"I don't want any doctor helping me deal with it." I hope you mean "I don't just want any random doctor" haha... I think, it's kinda important that it be a doctor to help you with it, and not just "somebody I can trust"... I trust my butcher, but he's not touching my butt. lol

Most colorectal surgeons can empathize and understand the situation.. It's their specialty. Besides, I think most butt-surgeons feel bad for their patients: why else would they have taken such a job? Hope you find someone soon.

Nch.... That's totally what I meant! That came out wrong haha

lololol... "Hi, ummm... I know you're only my mechanic, but I trust you lots, and was wondering if you could fix my extra arse hole?"

lol I only have one...

Sorry I should have explained better: I refer to my fistula as my other hole. I was imagining myself/you talking to different people you trusted about fixing your problem. Sorry for not making sense. hahaha

Lol ohhh I get it. I thought maybe you were referring to a stoma. What part of a fistula makes you think of a second "hole"? Lol. I'd compared mine to either the rocky mountains or the great wall of china lol. From my understanding, a fistula is created internally then makes its way and pertrudes in a tunnel shaped "lump" in the skin. Even if you pop it from the outside, the infection is beneath the skin so surgery is the only cure.

Sidenote: its kind of relaxing and nice to see other people be able to make jokes about this. I was always too embarrassed to talk about it with anybody. Besides my fiance, I probably only have 5 people in my life that know about it. When I would miss days from work and that because of crohns, I would make up other excuses.

I'm going to school to get my MA in pschyology so I can hopefully help other people, not specifically with crohn's, but in general being able to open up and be able to enjoy life better. I always just try to think to myself, Somewhere out there somebodys life is much worse than mine, and somewhere somebody is dealing with some pretty bad stuff.

Hmm... Maybe we have different definitions. As far as I know, for something to be considered a fistula, it has to have two openings. One, at the beginning of wherever it started, like the intestines. Then it tunnels its way through to the outside of the skin, making the lumpy bleeding thing.

Wait, is yours an abscess that only opens at the outside of your skin? Like a pimple?

And yeah, it is quite nice to talk about these kinds of things/make jokes about them, isn't it?

Well that's what I thought at first, but then after a few doctors telling me other words, and continously popping it, and it doing nothing, I'm left in the dark as to what it is. If I could describe it, its a tunnel-looking growth on the skin, next to the anus. The (growth we'll call it) feels hard, but is constantly discharging puss, at the most random times. I can't find where this leak is coming from either, and it can go a week or so with nothing, then other times its so embarrassing it looks like I made a mess in my shorts so I have to change. Its a puss like texture too. Its sticky, and not liquidy. Not very often (but sometimes) it starts to really hard badly, and seems to grow a blister-like thing ON TOP of the already big (whatever it is) lol. I can pop that and it relieves a lot of pressure, let's out a lot of puss, and gets rid of the pain, but like I said above, this tunnel shaped lump is not pop-able by myself.

OMG. Please don't pop it. That is just the most disturbing thing I've heard of...

It sounds like a fistula. But generally, a fistula has two openings. One, on the inside of the bowels, which eats its way to the outside of the skin. Like a tunnel. But, maybe yours closed on the inside? I'm not sure. It does sound like a fistula. It should feel hard, because it's really irritated. The leak is just bodily fluid... You've got a tunnel inside you with raw skin, so your body is trying (and failing) at fixing it.

When it covers up, and grows a head, I think it's technically an abscess. Because it doesn't have anywhere to drain. Either way, go see your GI. Ask him about a seton. It'll stop the regrowth of skin, so it doesn't build up pressure. They're uncomfortable at first, but your butt gets used to having a loop inside of it, and it helps alot.

But yeah, that's why I call mine my second butthole. It tunnels from inside my rectum to outside my anus. haha tmi. I know.

Interesting. I could never pop the fistula itself, but it seems like sometimes it grows a blister like thing on top of the fistula, which becomes extremely painful, and needs to be popped so I can sit down. It's really easy to pop, and doesnt hurt to pop, but needs to be done. The instant difference in comfort is amazing! In fact, one time it was so bad, and this was the first time its ever happened so I wasnt sure what it was, I had to have somebody drive me to the hospital because it hurt so bad. In the time it took to get from my house to the hospital, it popped just from the weight of me sitting on the seat, and suddenly there was no pain anymore.

How long have you had yours for? and do you have the seaton you talk about? Is that permanent? I know it sounds grosse, but I guess thats what this forum is for, but what do you use (if anything) to avoid having it look like you had an accident in your pants after sitting down?

The other day I was in Tim Hortons (go Canada!) and after sitting on the metal chairs for like 15 mins, I got up and had some marks on my shorts as if I farted, and more than just air came out. I know what it is, but others dont. It was really embarrassing. Sometimes I have to use girl products (pads) to stick in my underwear to absorb it to avoid embarrassment while out, and at college. I hate it.

Try a hot compress. Popping just sounds so.. disturbing. Just hot water + face cloth (except, not for your face ) on the area. But not too hot. Don't burn the skin.

I had an abscess in November. Took about five months before they put a seton in. It isn't permanent, unless I want it to be. There's medications and surguries to take care of the fistula, once it's stopped becoming inflamed and such. I use pantiliners! I'm a guy too, so it's kinda weird. But, big ones, with good absorption. Sometimes, the goo smells funny XD Another thing you could do, is stick a gauze pad up in your crack. It'll be like, a secondary method of protection. Also, there's these things called "Tucks"... You can get them at Shoppers. They're witch hazel gauze pads. I put them in my bum crack, and they take care of any goo. They also keep it fresh feeling.

Do you have CVS up there? Their store brand gauze sponges are VERY soft and non irritating and absorb a LOT. I just wedge one in my butt crack all day. A little less personally humiliating than menstrual pads. Still, too much pride and this disease don't mix and will cause you mote stress. It's best to let to and learn to laugh at yourself a bit you'll feel better mentally and physically.

Maybe I should try to explain it better.. When I "pop" it, it's like picking skin after a sunburn. Thats how easy you can take it off. It's almost like a build up of puss, then somehow a thin layer of skin builds over it, and holds it in. Thats why it pops so easily when I sit sometimes. When it comes out though, it's like squeezing one of those little bath balls that carry soap in them. It sounds like you've had yours for awhile. Will it ever stop draining? My concern is that I don't want to go through the surgery and all that if it will still drain, and from what I read, it's not uncommon for it to come back.

Mine doesnt smell, or so I don't think so, and I wouldnt say it drains alot, but its like oil on a concrete floor. It could be very little, but it seems to spread and look way bigger then there really is.

By the way, Thanks for all your help you've given!

muppet said:

Do you have CVS up there? Their store brand gauze sponges are VERY soft and non irritating and absorb a LOT. I just wedge one in my butt crack all day. A little less personally humiliating than menstrual pads. Still, too much pride and this disease don't mix and will cause you mote stress. It's best to let to and learn to laugh at yourself a bit you'll feel better mentally and physically.

Click to expand...

No, we've got no CVS in canada I looked for something akin to what you showed me the other day at Shoppers (which is like CVS)... So much more expensive. It's like, twenty bucks for 50 gauze pads. WTF?

I'd offer to ship but from experience I know it's very expensive to send stuff up there. If you can think of a way to do it where it wouldn't be prohibitive, I could try and help you out. They don't weigh much and I could probably compress a lot of them into a small box.

The reason I recommend the specific brand (or non brand) is that most gauze sponges are NOT woven the same way as theirs. The threadcount is higher and the fibers are softer. I don't know who manufactures them or what other generic equivalents might be.

Muppet, I really dont mind the pads, as I dont feel them, and I can leave them in all day and not have to worry, where as I'd have to replace the gauze every time I went to the bathroom, but you're right, You do have to laugh it off sometimes. My fiance knows about it all because she's helped with me with it, but sometimes when it happens, I just think to myself, atleast I don't have a bright green or purple mohawk walking through the mall with my pants hanging down to my knees lol. I'm usually pretty good with playing it off as if I sat in water too, and it doesnt happen too often, it just sucks when it does

Well thanks for the offer muppet But I don't live very far from the border, and there's a CVS right across it. I'm heading over to the US within two weeks, so I'm gonna stockpile. But again, that's very kind of you

Well, I don't mean to be gross, but to save money I don't replace the gauze every time I go to the bathroom. It depends on how active my fistula is. If the pad is fairly clean, I just.. err.. leave it in my pants while I take care of business, then replace the pad. I figure it doesn't really matter much how clean my hands are right at that moment because the pad is going "in there" anyway.

Yeah I guess that could work. I don't know if I'm in the wrong or not, but because I'm trying to gain weight/weight train, I've been waiting until I absolutely have to go to the bathroom, so some times I find myself doing a little more than just walking to get there. I'm very picky as to going in public bathrooms as well due to privacy with crohn's' lovely firework display it often sounds like lol. Although I hate hearing anyone else has to deal with it, I'm glad I'm not the only one who has methods of hiding the drainage. I make my fiance get the pads though, as I just feel awkward going into Shoppers doing that, but for now like I said, they dont seem to irritate me, and nobody can see them so I don't mind them. I think I would be too afraid of the gauze up the "butt crack" would fall out, or I'd find myself walking around with my knees touching as if I have to pee lol

I don't know about weight training/gaining, but I do know that with Crohn's, waiting to use the bathroom when you know you've got to void is a HUGE no no. It's very irritating to your inflamed colon and can cause you more problems like infection if your flora is messed up (many of us have this issue). To try to offset this a bit, I drink a lot of water, although that's no help with the reduced absorption of other nutrients. I don't think much of that goes on in the colon anyhow, if any at all.

Okay, maybe I'll try. Is there a list somewhere that will show me foods we can absorb and foods we eat that just go in and out? Also, I tried searching but couldnt find much, but is it odd that I haven't had a "formed" bathroom visit in years? Am I alone on that one?

Somewhere on the forum someone started a survey about safe and non-safe foods and collated the results with the frequency they seem to appear in various people's lists. I'm not sure where that is though... and that list related to irritation not necessarily nutrient absorption but I'd be willing to bet there's at least a correlation there.

I don't really mean safe and unsafe as I seem to be fine eating anything. I just mean, I know with gaining weight (bulking) you need a lot of carbs, protein, stuff like that, but from my understanding, people with crohn's don't get nearly as much out of what we eat, as people with crohn's. I've been eating approx 4-5000 calories a day, but if I'm eating things my body won't allow to absorb, its defeating the purpose isn't it?

There's a lot of theories about this and it's tough to get a straight answer.

My daughter and I are going to be starting a modified keto diet next week after reading "Breaking the Vicious Cycle" which posits that carbs are actually responsible for a great deal of the inflammation and irritation with Crohn's disease because of how they interact with gut flora.

You should probably talk to a licensed nutritionist with IBD experience. My parents did that 28 years ago and it probably saved my life.

Also, I don't doubt your personal experience and observations but sometimes telling whether or not X food actually bothers your Crohn's can be very difficult because of the time delay involved. Usually by the time something bothers you you're not thinking about what you ate 6 hours ago, although sometimes the interval is shorter it isn't always.

I only say this because I find it hard to believe that somebody with fistulizing Crohn's hasn't got SOME sort of food sensitivity or another. If that's true you should probably be in a museum.. or a research lab. LOL

Hmm, okay thanks! I've been waiting for my benefits to kick in from school so I can go talk to the proper nutritionists, and get some other tests done so I can hopefully get some proper supplements for my body for weight gaining

Wow Muppet, I totally missed your last comment. I guess I could have some things that affect me but I don't realize it because of the time delay. I don't recall having any foods that make me go to the bathroom immediately after eating. I don't really like the taste of any spicy foods either so I wouldn't really know if that affects me. I can go out to chinese buffet and stuff my face and be fine though. The only known thing I know affects me is beer, but I rarely ever drink, and when I do its not a whole lot so it isn't the end of the world for me. I currently keep logs of what I eat during the day to keep track of weight gain and what's working, and for the most part I do eat pretty healthy for somebody my age that lives on his/her own lol.

I do go to the bathroom approx 4-6 times a day, sometimes less, but I never feel any different about eating or what is causing it. Maybe ill try to pay more attention to it as well. Thanks

I was in the same boat as you a while back, K. I felt like crap no matter what I ate. For some reason, I later started noticing that certain foods would make me sick and such.. I have no idea why.

The point is, you might NOT find that anything bothers you specifically right now, and later develop a specific set of intolerances.

Yeah, like I said, I keep a log of what I eat and the times so if I have a bad day I can look back and see what went on. I don't really have too many days where I don't feel normal. Sometimes I completely forget I have crohn's...until I go to the bathroom of course lol. I seem to notice my biggest trigger is stress, and that's what usually sets me off "down there" I strongly believe stress is the biggest cause/factor with crohn's