Peri-anal Crohns

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Hi all,

I am very lucky that my bowels tend not to be too bad as long as I'm careful with what I eat. Though I am on Pentasa and Imuran plus have plenty of pain killers as a stand by. However my Gastro Consultant has decided to put me on Infliximab as soon as I have gotten over my last op.

My problem is the Peri-anal Crohns. I would like to know if anyone has found that having a job where they sit for the majority of the time appears to aggravate this condition for them.

The reason I am asking is that it seems this way for me, as each time I go back to work I have flare ups. Unfortunately I also have arthritis in my coccyx and sacrum so having abcesses in this area is particularly troublesome. I am hoping to go back to work soon, I know this will be a suck it and see period, but would appreciate some feed back as to the experience of other sufferers. I'm beginning to wonder if I should work or not, but I don't want to not work so its very difficult to know what to do.

Thanks for 'listening'.

Ann

Hi Ann,

I've had perianal Crohn's for the last six years. My backside looks like the Surgeons have played noughts and crosses (Tic Tac Toe) on it with a rusty penknife! I can confirm that sitting at a desk most of the day definitely makes things worse for me. I also find that standing on the spot for a long time is also bad in that is seems to make the anus go into spasm. Walking around is ok unless things are really bad when I tend to limp. The only real comfort that I get is lying down, although even that is not guaranteed. These days as I have referred pain in my left thigh that has only got worse with each surgery.

Not working is not an option for me, plus I enjoy my work most of the time. If I'm recovering from Surgery or having a particularly bad day there is often stuff that I can do from home with the laptop while lying on the bed. My employer is quite understanding and has offered to provide alternative office furniture if that would help. I've not taken them up on it as I've not found anything that really helps. Have you talked to your employer about changes to your working arrangements?

Hope you are feeling more comfortable soon.

Mark

Hi Mark,

Thanks for the feed back. I also find standing in one place difficult when bad! But it also affects walking when I have a flare up as it has tended to press on my coccyx, making walking up and down stairs particularly painful. Of course sitting isn't good and getting up from sitting even worse.

I work for the PCT bank Admin in Cornwall. They have tried to ensure I have good seating and I use a coccyx cushion ~ couldn't cope with a ring. But being bank makes my standing a little more tenuous. I have just applied for a six month contracted position with them ~ as you may know PCT's are being disbanded, so jobs aren't going to be available. I'm panicking that I might not be able to work if this problem keeps popping up!

I also have a seaton at the moment and hope you get well soon

kind regards

Ann

Hi Ann,

Yes, I forgot to mention how much psyching-up is required to get from being seated to standing!

Sorry to hear about the employment situation and hope things work out ok in the end. Let us know how you get on.

Mark

Hi Ann and welcome! I don't have any advice for you but just wanted to say welcome and I love your user name!

Hope you find some answers soon and find some relief for your situation.

- Amy

Hi Amy,

Thanks for that :thumright:

Kind regards
Ann

Hi Ann and welcome! Working with Crohn's can be difficult at times. My Crohn's affects my rectum, and it can make a desk job agonizing! On really bad days, I wish I didn't have to work, but I need the pay check. However, I find working best for me mentally. It helps me keep my mind off not feeling well. I am not sure what kind of work you do, but do you think your employer could be accommodating like Mark's to let you work from home when you aren't well?

Hello Anne,

I truly believe that sitting at my computer all day for hours, being over weight, unhealthy eating habits, lack of exercise, and stage 3 hemorrhoids somehow attributed to my peri-anal Crohns. That is the only area I have it. Now I am dealing with a seton also which I wish someone would have told me that it was a possibility I could get one cause I would have done things differently for sure. Anyway, I was working at home and knew I had to just stop. I did and have slowly started working again but very part time and only sheen I feel good. I tell my clients this. So far it's working out for me. I wish I could work more but it's too hard on my bottom. I also have crohn skin tags and some are hemorrhoid related and painful at times. It's all so embarrassing and humiliating. I hate it all but am thankful that it is not worse and grateful I found the SCDiet that has brought me to no flareups at all.

Is your fistula healing well? I have no clear answer to how long mine will be there. I am hoping and praying it heals before the 2 year mark. Maybe even the One year mark too will be in august.

Rox

Hi Anne, like Amy, I can't give any advice. My brother who has CD has suffered with many perianal abscesses. He's undergone surgery and has had a lot of discomfort with it. He's not one that complains openly, so I didn't know about it until much later. Other than what I've heard or read, I don't have any experience in this area. I also want to welcome you to the forum.

Hi Annie. Welcome. I don't have all the answers for you, but maybe you'll find something of help. I had an abscess start around the beginning of the year and had a seton placed about a month ago. Like you, I've found sitting to be a challenge, especially at work. Of course, it all depends on what you do at work, and what accommodations can be made for you/by you, but here's a few things I can mention. I hope they help.

At home, I can wince, complain aloud, and fidget without fear of people (who don't already know my details) from noticing. But at work, I'm not exactly excited to telegraph anything that I didn't really want to explain to people. I feel for you and know exactly how painful, sore, and uncomfortable that is. It all adds up throughout the day too, which has made for very, very long days that start better than they end for me.

Both with the abscess and the seton, I found that the most uncomfortable I was, was when I'd first sit down or when I'd stand back up. Not that finding the position of "least pain" was pleasant, but it seems better than sitting down and standing up. If you have a chair with "arms," I found that I was able to push my forearms between my elbows and wrists on the arms and use my stomach muscles to position myself with the least amount of pain. It's hard to explain, but I kind of lift my lower body and legs under the weight I put on the arms of the chair.

Also, in certain chairs, I find that if I'm able to lean back, it helps me to "sit" with more weight distributed between my lower back and the back of my legs closer to my knees, rather than directly on my bum. I was able to get relatively comfortable this way in chairs that leaned back by design, like a swivel desk chair, or even a fixed leg chair that I leaned the whole chair back - be careful not to fall backwards! I even rest the front legs of the chair on the tops of my shoes, which isn't exactly comfortable either, but I know that I'm not leaning back too far this way. A small pillow jammed between your lower back and the chair back sometimes helped distribute my weight properly, but sometimes made me grumpier.

The thing that has helped me the most, however, is that I made myself take a sitz bath during the workday. The first couple of days I had my seton at work, I didn't want to go home in the middle of the day because it would be a pain, but it's what I look forward to all morning now. I have to work an extra half an hour or so and eat my lunch in the car, but this has made my afternoons so much more tolerable. Combine the comfort of the bath with the fact that I have a bit of time to walk around and "deal" by myself, rather than try to hide it in front of others, and it does seem to make a difference.

EDIT: Many people have assumed that my ginger movements are from back pain. I don't really fib around their assumption, and I do have to listen to people recommend a chiropractor, heating pad, etc, but I don't have to tell them either. From a certain point of view, it is "back pain," just not what your coworkers might think of first.

Hi welcome

I cannot give advice either just wanted to say welcome and that I hope that your situation becomes more comfortable for you.

Sawdust,

I agree with all you say about finding comfort in chairs. I thought it was just me, but it seem to have found a similar way to deal with this discomfort. Lowering my self into position using my arms also works well for getting into a car seat.

One place I have to differ with you, and it's just a personal thing, is over sharing what my problem is with work colleagues. I'm completely open with them. I've never been embarrassed about my condition and I would not have been able to hold a cover story over the last 6 years. Unfortunately, for those of you who are new to "the fistula club", I hate to break it to you, but perianal fistulas can be very difficult to treat.

Let's hope we can all find more comfort soon.

Mark

Hi all,

Thanks for the warm welcome and kind wishes. Andi; Your brother is very brave its not something that is easy to hide! Jill; my employer lets some people work from home if they are full time and permanent, I work on an as and when basis (bank) so it wouldn't be a possibility for me. This is why I would like a more permanent role so that I might actually be more productive. I just need that job now, which is the dificult part! Rox; My first op didn't ever seem to heal and just got worse, so 2 years later I have had another op, about two weeks ago. Both times I had a seton but the first time it didn't work so had to have the area laid open. Just hope it works this time. I hope your fistula heals soon.

Thanks again and I hope your days are happy and relatively pain free

I just believe mine will heal and I won't have the fistula indefinitely. Ann, u have perianal Crohns and they laid out ur fistula? isn't it harder to heal if the Crohns is in the area of the fistula? Are u still getting flareups there? Is it true that if we have no flareups that healing will be quicker? That is my hope because as of now as long as I eat the foods that cause me no D I get no flareups. I just believe this will all be history fog me oneday.

Hi Rox,

Yes I did think it odd having it laid open but my surgeon, Gastro consultant and GP all said it was the best way as I was on Infliximab at the time ~ obscurely I haven't suffered from long bouts of D since I first started the Infliximab. Being daft I thought that I didn't need it any more so stopped it and I think think that this could be the reason for the flare up. This Crohns thing is totally odd.

Hi Anne! Yes anytime I sit for long stretches my anal fissures open, bleed, and bowel seepage as well (sorry to be gross). Especially when I sit all day, like at work or on a long driving trip, which is the worst. It doesn't seem like it's a flare, just like it aggravates it.

I keep a little "Crohn's first aid kit" in my purse at all times-a baggy with Tucks pads in the travel size, Bactrim, and Calmoseptine. Also, antibacterial liquid soap and those things that cover your finger for application. Then if I'm somewhere and it starts acting up, I just treat as I would at home (in the restroom of course). If I ever spill my purse, people will be horrified lol.

If it's really too much to handle, your GI can prescribe Cortifoam-that usually calms everything down. Hope this helps! :thumright:

My colo-rectal surgeon has never told me that it wouldn't heal. She never told me that I would need any surgery in the future to repair it either. So I was just assuming it would heal on it's own. I can't imagine having it laid open. I am not even 100% positive if it goes through the muscle or not. The doc just said that she did not want to that that surgery because of possible fecal incontinance. She said the seton would be a better way to deal with it.

I have had setons in since Oct and I started Remicade in Nov. My surgeon said the setons may stay in forever but my GI says they should heal with the Remicade. Mine don't hurt as bad as they once did and I can sit on soft chairs fine. I hope they heal up I don't like having extra holes in me. One back there was enough.

My colo-rectal surgeon wanted me to go on Remicade but I said "NO" because i believe my special diet will do the trick. I want to see her again to take a look at my progress but so far I haven't been able to due to her being out of my ins. network. I filed an appeal and am waiting. But seriously it seemed like when I told her "no" she acted like she would not remove it unless it was healing right and in her opinion she trusts only the Remicade. I have to talk to her again about all this because if it is healing properly (which I feel it is) then I should just continue this route until it's time to remove it. My problem now is that somehow it is causing hemorrhoid/skin tag pain/throbbing issues from time to time. I am not sure why, but I know the opening of the fistula on the outside is right next to an inflamed hemmoroid. This happened when the opening of the fistula was getting infected. Once the infection when away the swollen hemrrhoid did not go away. So that is my problem now. At least that is the thing causing me more pain than the fistula. Fistula doesn't hurt. the hemrrhoid does. Like someone is stabbing it. Ouch!!

Hi there and welcome!

I haven't officially been diagnosed but my doctor is thinking peri-anal crohn's which she said is just plain nasty. I am prescribed an intense pain killer - Percocet - for daily use but I don't want to live on pain killers. However I find that the anal pain is just unbearable. I have chronic fissures and massive Painful hemmorhoids. I'm looking for pain relief but just not finding it!

I hope that you find some answers and that I do to so we can all share that. Support is the best treatment I have found so far and this is the place for it!!!!

Hi and thanks again to everyone.

All I can say is thank goodness I live in the UK and have no worries about costs! I have every empathy for those of you who have to face the mine fields of medical insurance ~ please God don't let us lose the NHS!

Hi Ann,

Cost is still an issue in the UK due to a post code lottery. My PCT has been very reluctant to approve treatment with Infliximab and more recently with Humira. They even lied to my Consultant and GP when the most recent challenge was made about their failure to approve funding for the Humira. I would not want to be without the NHs, but it's not perfect either. I really feel for our friends overseas who perhaps have to make the call about eating or their mortgage vs going to the Hospital/Doctor.

Let's hope that effective treatment for this disease is available to us all very soon.

Mark

Hi Ann!
I also have peri-anal crohns, and my bum is in pretty bad shape. I had an ostomy for six months partially because of the state of things down there, and my surgeon believes that a permanent one will be in my future someday, although I am hopeful that there will be some advances in medical science before then. I’m not ready to give up on my guts or my bum just yet. I have also had two fistulas in the past, skin tags and hemmies. Blah. Sitting doesn’t seem to be a problem for me though, unless I currently have a fistula. I’m sorry it is a problem for you. I do have a desk job (which I blame for all of my weight gain this year), but I am aloud to work from home when I am not well. I also work from home every Wednesday.
Like Mark, I am pretty open about my disease, as in everyone knows I have it, knows when I have gone in for surgeries, but I don’t feel the need to tell them every little detail.
Mountaingem, your Crohns kit reminds me of when I had my ostomy. I always had to bring so much stuff with me (just in case) wherever I went.
I know it is not the case for everyone, but my fistulas both healed up well after I had them drained (blah), or whatever it is they did in surgery. They were both on the outside of my body though, near my rectum. My last one was several years ago, so forgive me for not remembering details. I do remember the packing they put in the wound though. When I pulled it out, I couldn’t believe how much was crammed in there! It was sort of horrifying and amazing at the same time. I just have a little hole there now that will never close, but isn’t a problem for me.
Good luck to you, and I hope you get the answers you seek soon. Welcome to the forum!
PS-Isn’t it cool to have a place to talk about all of our gross problems with people who have similar gross problems?

Mark63 said:

Sawdust,

I agree with all you say about finding comfort in chairs. I thought it was just me, but it seem to have found a similar way to deal with this discomfort. Lowering my self into position using my arms also works well for getting into a car seat.

One place I have to differ with you, and it's just a personal thing, is over sharing what my problem is with work colleagues. I'm completely open with them. I've never been embarrassed about my condition and I would not have been able to hold a cover story over the last 6 years. Unfortunately, for those of you who are new to "the fistula club", I hate to break it to you, but perianal fistulas can be very difficult to treat.

Let's hope we can all find more comfort soon.

Mark

Click to expand...

Maybe I'm being naive about telling people, but yes, so far I've treated it on a need-to-know kind of basis. While I'd prefer that causal acquaintances didn't think about my broken bum, I'll probably find it unavoidable over time. I'm not lying to people... just not giving thorough explanations with diagrams and sound effects if they don't directly ask me.

Also, some of the family I told thought the seton process seemed to be some archaic surgery, that's just unlike we're used to hearing about today. Joking, they wanted to know if leeches were prescribed and whether they could visit the alchemist on my behalf. If I hadn't joined here and started reading up on this stuff again, I'm sure that would have been my reaction to the doctor as well.

sawdust said:

Also, some of the family I told thought the seton process seemed to be some archaic surgery, that's just unlike we're used to hearing about today. Joking, they wanted to know if leeches were prescribed and whether they could visit the alchemist on my behalf. If I hadn't joined here and started reading up on this stuff again, I'm sure that would have been my reaction to the doctor as well.

Click to expand...

Funny you say that. I am surprised by the number of people on here who have setons. I have seen two different surgeons for fistulas (although they were rectovaginal, so maybe that's why the difference), but neither one of them ever mentioned a seton. The both took the same approach...Cipro and Flagyl to drain the surrounding abscess and then did a flap advancement surgery, where a healthy piece of tissue was sewn over the internal opening to close it off. First one was unsuccessful (either that or another one cropped up in its place). The second surgeon reinforced it with aloe and so far so good. That was 18 months ago. I do still have some rectal issues, but nothing like before. As far as I know, very few people on this forum have had this surgery and I am not sure why. I know that there is a lower success rate for people with Crohn's so I may end up back where I started eventually, but it has been worth it for the relief, even if temporary.

Has any one discussed this option with their surgeon and decided against it? What were the drawbacks? Just wondering...

Cookie said:

Has any one discussed this option with their surgeon and decided against it? What were the drawbacks? Just wondering...

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I've discussed it with the Surgeons, but they didn't want to consider it due to the Crohn's. They said that the flap tends not to take and fall off. I guess they can only do it a couple of times else they'll make a bigger problem than they were trying to solve in the first place. It was a similar story with a fistula plug, but they would consider trying that as there is a low risk of damaging the sphincter muscle and ending up incontinent.

Just out of curiosity, what does the Aloe reinforcement involve? In the course of trying to fix these fistulas I've had all sorts of things shoved-up my A***, but a flowering plant would be a new one!

Mark

Mark63 said:

Just out of curiosity, what does the Aloe reinforcement involve? In the course of trying to fix these fistulas I've had all sorts of things shoved-up my A***, but a flowering plant would be a new one!

Mark

Click to expand...

LOL...Hey, whatever it takes, right? At least it might smell nice. Honestly, I'm not 100% about the aloe, but it is a fibrous tissue sheet that adds strength. I think they use aloe because it is a natural tissue and your body will accept it. As far as what you said about the sphincter muscle, I have had a slight amount of incontinence since the surgery, but it is more like leakage and it is nothing compared to the fistula drainage I was getting. In fact, I am not for sure if it is from the sphincter muscle or a new fistula, but either way I am way better off than before. I realize that this might not be a permanent fix due to the Crohn's, but even if it would fall apart tomorrow, it was worth the 18 months of relief!

The seton was to help give the fistula time to heal. I am hoping they can just remove it but then I see that the hole inside the rectum can still seep fecal matter into the fistula, right? I read about a guy who had two fistulas and they both healed up nicely so they removed his setons and that was it. So I was just assuming that could happen for me. He was symptom free of Crohns just like me, only thing was that I did show some (very little inflammation) in my rectum on my last colonoscopy but that could have been because of the prep procedure, right? I mean come on, that is hard on a persons bowels. But maybe I am wrong. Other than that I usually have no symptoms now except gas . Or if I eat the wrong thing (which I don't normally do).

Welcome Ann, I too have been battling with peri-anal crohn's for 6 years now. It has mainly been chronic fissures until last year things got worse. I have had two peri-anal fistula's - 1 layed open and the last one treated with a seton since it involved half my sphincter muscle. I have had the seton in since Sept '10.

I work a job that I sit all day in front of a computer. For me the biggest thing is to be very gentle when sitting down. Slowly lowering myself. This is also very important when getting in and out of the car - like Mark mentioned. When things are bad I tend to lean to one side in my office chair. Probably not the best posture but it takes the pressure off.

I have found the discussion interesting in regards to seton's. I am still a little baffled about how you tell if a fistula is "healing". I started Azathioprine(Imuran) mainly because of the fistula. Mine isn't as painful now but it is still draining - which gets really old. But I would think having a zip tie in the rear would make the body always treat it as a foreign object. The last time I saw my CRS he said he would be comfortable pulling it at anytime. But the GI wants to wait to see if the Azathioprine works. My CRS has also told me that he would not treat the fistula surgically because I have Crohn's.

Cookie said:

Funny you say that. I am surprised by the number of people on here who have setons. I have seen two different surgeons for fistulas (although they were rectovaginal, so maybe that's why the difference), but neither one of them ever mentioned a seton. The both took the same approach...Cipro and Flagyl to drain the surrounding abscess and then did a flap advancement surgery, where a healthy piece of tissue was sewn over the internal opening to close it off. First one was unsuccessful (either that or another one cropped up in its place). The second surgeon reinforced it with aloe and so far so good. That was 18 months ago. I do still have some rectal issues, but nothing like before. As far as I know, very few people on this forum have had this surgery and I am not sure why. I know that there is a lower success rate for people with Crohn's so I may end up back where I started eventually, but it has been worth it for the relief, even if temporary.

Has any one discussed this option with their surgeon and decided against it? What were the drawbacks? Just wondering...

Click to expand...

I had this surgery done back in 1986 - I was undiagnosed, and my GI now tells me that the fistula should have clued my doctor in that I had Crohn's. Anyhow, The surgery went fine, the only complication was that it tried to form another abscess (on the inside), but antibiotics stopped the infection and it healed up completely. No incontinence at all. A little tight actually. I've never had another incidence of a fissure or a fistula - so far knock on wood.

Paulspain, I have had my draining seton since August 2010 and agree " it's getting old" in response to one of your docs willing to pull out? I wonder if it is because it is healing well? Or is it not through the muscle? Or that would have it heal completely? Do you have the seton through the rectum too? Cai it reinfect since there is a whole in the rectum if they pulled it out? Has your doc answered any of these questions? Also in regards to your quote "But I would think having a zip tie in the rear would make the body always treat it as a foreign object" I totally also see this as common sense too!

Nicole, all my issues are on my bum too. Skin tags, some with hemmies. I wonder did any of your setons cause more hemmie pain, and did it make your hemmies worse? It's seems like my Skin tags are getting larger on the side right near the opening of the seton. Anyway, how did your fistulas heal? How long did it take? What kind of surgery did u have? Were your fistulas through the muscle? I am so wanting all this to be in my past. So far i have had this draining fistula for 7 months. I feel a little stinging pain on the outside when I clean that area. I wish my bum was normal again.

hope4 said:

Paulspain, I have had my draining seton since August 2010 and agree " it's getting old" in response to one of your docs willing to pull out? I wonder if it is because it is healing well? Or is it not through the muscle? Or that would have it heal completely? Do you have the seton through the rectum too? Cai it reinfect since there is a whole in the rectum if they pulled it out? Has your doc answered any of these questions? Also in regards to your quote "But I would think having a zip tie in the rear would make the body always treat it as a foreign object" I totally also see this as common sense too!

Click to expand...

I was told my fistula involves 1/2 my sphincter muscle. So one side of the seton enters the incision from draining the abscess and comes out my anus. So I assume the other end of the fistula must be in my anal canal. I think my CRS was willing to pull it since he thinks the tissue looked really healthy. He said my rear usually looks very inflamed.... But at my last GI appointment they made it seem that all drainage should stop. So I am completely confused :yrolleyes: on what to expect.

I would rather have a seton than risk an abscess forming in that area again though. So I want the doctor's to be confident that things are healed before pulling the thing. The abscess and surgery was a very unpleasant experience I would rather not repeat. I had a bleed a day after the surgery that sent me to the ER.

PaulsPain,

Yes, I have crohns in the peri-anal region too and no where else. I am not on any drugs though. Trying to do things naturally. But seriously I don't know how to heal a fistula naturally except take my supplements. Have you heard about the oil of oregano approach? I have but I am too scared right now to try it. Using a syphon to squirt this Oil of Oregano (mixed with olive oil) into the fistula. I am a chicken.

*Bum Glum*

Peri-Annie,

My spouse has had a peri-rectal ulcer from Crohn's, and the pain was definitely increased by having a desk job. Her pain was abated with a hemorrhoid cream/steroid cream mix. I would also recommend sitting on an inflatable ring, the kind they give post-op hemorrhoidal patients.

Dr. S

Setons.... I had my second surgery yesterday to insert yet more (first one was Sept 2010 - it took me about two months to begin to forget the pain caused by the seton, then another abscess started making my life miserable).

After yesterday's surgery, at the moment I don't yet have the courage to look down there, but I have felt it lightly and it feels like a freakin' forest :-(

My bowels haven't started functioning yet, I guess due to the recent physical trauma, but I am absolutely dreading what will happen. It feels like I have a bunch of entangled strings. Thankfully I'm seeing the doctor Tuesday, hope to get some tips on how to handle this.

Also dreading going to the gym - these setons feel so big I think they will be standing out when changing in the locker room, when swimming, showering... I know it sounds silly, but I do feel embarrassed at the thought. Not that I'll be engaging in heavy-duty exercise anytime soon, but a gentle swim has done wonders for my spirits in the past - and even that feels sort of compromised at the moment. Oh well, let them look if they have to, I guess.