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I had small perianal fistula drained... A fistulatomy . I ah the strongest urge to pee afterward, for about 6 hours. I would pee but after I was done peeing it felt like I had to go again. I then realized I still had the packing in...after removing it(ouch) I had instant relief.. I was able to sleep a few hours last night but woke up around 5 with pain and having the urge to pee again..I spoke with the doctor twice and he said it was a good sign I could pee and it's prob spasms.... I have take sitz baths and warm baths....
Has this ever happened to anyone? Anyone have suggestions for relief?
 
@harper, I hope your surgery starts your road to feeling better. And yes, that happened to me with two of my surgeries. Is it because you need a catheter? My bladder was unable to function normally after two of my surgeries and I felt the constant urg to pee. Both times they inserted a foley and I needed to keep it in for 3 days and then I was fine when they took it out
 
I've found an image for knotted setons at www.colondoc.ca. It's the website of Dr. Wayne Rosen, GI,Calgary,Alberta. The website offers other diagrams & a very simplified explaination of Perianal Crohn's. I've given the website to a few people who were having difficulty understanding Perianal Crohn's!
 

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When I first had the gauze in it was a little bit coming out.. But now a lot comes out..but the pressure still feels like I need to pee.. I am taking 45 minutes between toilet breaks. I have been drinking a TON of water.. But just wondering what the urge to pee is all the time,,,
Maybe it's part of the heeling?
 
No, I don't think thats part of healing, but thats just my opinion. Anytime I had that, I needed a catheter. The first time I went to the emergency room and they put the catheer in and SO much came out and I had immediate relief and the second time I was still in the hospital so they just put it in there and I had the same immediate relief
 
At first there was some, not a lot. and then it started to be just a little bit at a time and I never felt like I got it all out and i would have the pee sensation right away when I was done
 
You could have some swelling from the surgery that is preventing urine from getting out. Also those are symptoms of bladder infection. But my guess is it's from swelling.
 
This is TMI. But I am peeing about a cup full at a time... It just keeps feeling like I have to go and I go...then wait about 45 and pee a cup again...
It could be swelling... When I talked to the doc he said it's from spasms
 
Has anyone had sepsis from a fistula before? I have a fistula that's giving me problems I'm having surgery Thursday to remove the colon but in the meantime this fistula hurts and is still draining some I've noticed there is a little blood could be from the ulcerated bowel who knows?
 
fresh blood? from the fistula? My fistulas get tender sometimes and sometimes they bleed fresh blood. They never stop draining yucky stuff. You most likely are ok - hot baths are a great help. Unless you have a high fever and then that should be a visit to ER. At least it is for me.
 
Its fresh not a lot and its mixed with yuk I get about 2 table spoons of drainage every 6 to 8 hours maybeva little less I guess when they remove the colon they'll remove the fistustula I can't imagine them not doing that.Ive only had low grade fevers which I get when flairing anyway.
 
Ann Morgan said:
Yeah, I need to experiment with different vegetables and fruits in my smoothies so that I can see what my body can tolerate. I am not following my Nutribullet recipes because I did not think I could tolerate any of the vegetables that they used. I sent the recipe book to my Aunt because she was thinking about buying a juicer. I thought the NutriBullet would be a better option for her. Juicers are expensive and blenders are messy. I can still look up recipes on the Internet. Thanks for your support.
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is it the fiber in the vegetable you are intolerant to? if that is the case, it may be worth investing in a quality juicer ( Omega Juicer about 300$). It takes apart all the pulp and fiber. You get all the vitamines and enzymes in the extracted juices. Dont get the low cost extractors, as they break down lots of vitamins and enzymes in the heated extracting process, they dont have the same mechanism.

have you tried seaweeds? they can be eaten raw or cooked, ideally raw to preserve all the enzymes. Whether cooked, drinking broth or raw, its FULL of minerals such as calcium. Some seaweed are also very rich in B12 vitamin. Not sure if the vitamine is lost in cooked version though.
 
Raw vegetables and fruits give me diarrhea.

I asked my old Gastroenterologist if I should be taking a multivitamin and he said no. Say What ?

I was taking iron pills, but recently my new Primary Care Physician said my iron levels were okay so he said I could quit taking the iron pills. Say What ? ( I told him I had a blood transfusion in 2009 because my iron levels were so low ).

The only vitamins I am taking at this time are B12 ( over the counter from the Pharmacy ) as prescribed by my Primary Care Physician. And D3 ( over the counter ) which was prescribed by my Endocrinologist ( she also takes care of my osteoporosis needs ).

I think I need a big vitamin booster shot once a month ! Is there anything out there like that ! There is no possible way that I am receiving much nutrition from the foods that I now eat. ( I WAS taking B12 shots a few years ago ).
 
Hi there
Sorry to just butt in the conversation but I'm having a urine problem at present...... I had my fistula laid open 3 days ago, it's transsphincteric so I had to sign all the papers regarding a risk to my sphincter muscle - however this has all been fine so far.

But! Last night I had a wee before coming to bed, had been in bed 5 minutes when I realised I was sat in a small puddle, I got up and looked and realised the bed was pretty wet....I did not feel an urge to wee of anything - could this be to pressure swelling post surgery? Nothing was mentioned that this could happen....I'm hoping it's a one off occurrence but who knows?

It's 4am here now, I can't sleep because my minds on overtime.

XX
 
Jay: So you eat no refined sugar, no cow dairy and no gluten ! What kind of food can you eat ? I love dairy. My Aunt has gone Gluten free, but I have never asked her what kind of food she eats on a daily basis. I tried the "Fed Up" challenge in March and it was extremely difficult. The whole idea was to cut out all added sugars for ten days. I read all my labels at the grocery store. I found a package of tortillas that had added sugar in them ! Now why would they have to put sugar in a tortilla ! "Fed Up" is a new documentary that I did not get to see yet. It is all about added sugars in our food and childhood obesity and diabetes. Katie Couric was one of the people that was a part of the documentary. The only food I found without sugar, one day at the store, was cheese, Triscuits and an orange. : - ) I know that organic foods have sugar in them as well and they just say " organic cane sugar". Would you eat organic cane sugar, or no ? Well, I was just wondering. Thanks for listening.
 
Hi Ron
They do think they may be the cause of mine - I will find out more when I go for my follow up - I have doctors notes galore ( from over 30 years!) reference me seeing the doc about constipation, I've always had to strain....
I've been treated in June 14 for a severe abscess and last week to have my fistula laid open.
They are going to start tests to find the cause, but looking at my medical history it's pointing towards years of straining etc.

XX
 
Ann Morgan said:
Jay: So you eat no refined sugar, no cow dairy and no gluten ! What kind of food can you eat ? I love dairy. My Aunt has gone Gluten free, but I have never asked her what kind of food she eats on a daily basis. .....Would you eat organic cane sugar, or no ? Well, I was just wondering. Thanks for listening.
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Ann, I've been wandering through my food eliminations as best as possible : ) Gluten Free has been easily a 100% commitment, No cow dairy has meant I've switched to goat yogurt & goat cheese - also an easy 100% effort...Now Refined Sugar - that represents my greatest challenge. If I'm dining out & go Gluten Free it often has sugar. When I make my own food I can best control the Refined Sugar Free. Maintaining a lifestyle of Refined Sugar Free represents my most difficult commitment : ) I had my third fistula surgery this week & have spent the last few days online reviewing www.breakingtheviciouscycle.info. I have also joined the SCD-PALEO SUPPORT FORUM & am in the process of now reviewing my current dietary approach. For example, I had switched to Goat Cheese from Cow Cheese thinking this was better...SCD actually forbids Chèvre but allows many Cow Cheeses..I think for many of us diet is an evolving issue. I am not perfect in my diet but I have come such a long way from where I started. I'm currently in the process of thinking how can I do things better : )
 
@AnnMorgan ..Can I recommend you go to Pinterest & search SCD recipes. You have asked what type of foods I have been eating. I have not been 100% SCD so I didn't want to indicate that on my Signature Line but I have been certainly relying on a lot of SCD recipes. I think browsing through a Pinterest - SCD Search will give you an idea of how I have been cooking & baking. They have lots of great suggestions. I have been making SCD muffins with nut flours this past year for easy snacks. I usually make several dozen at a time & freeze them. They are GlutenFree & use nut flours. They are also RefinedSugarFree & the recipes may require honey or dates-pineapple to provide some degree of sweetness. These are a breakfast favourite & I often take a few with me when I'm on the run so I have a handy snack in my purse if I do get stuck.. I hope this is of some help in providing you with recipe ideas that can be both healthy & enjoyable : )
 
Sazzle - Are you going to call the doc about the urinary issue? I have woken up soaked in fistula drainage and even a couple times with horrible d but never urine.

How are you doing now? I don't understand how the fistula could cause that but the swelling thought may be a good one. Farther up in this string I think Harper was having the same issue. Maybe you should touch base with him?
 
Jay: Thanks for all of the good advice. I have not been taking care of myself the way that I should be. I should be more active physically, but I always find an excuse not to be. I always use my physical health issues as excuses not to go for a walk, or to go swimming in the pool at my apartment complex. I need to start experimenting with foods and then write the results down and keep track of everything. I am not eating healthy. I think I am afraid of a lot of the foods that have given me diarrhea in the past. I have had diarrhea for 17 years, but since May 2014 I have been constipated ! ( My recent colonoscopy came back "normal". Say What ? ) Well, now that I am constipated, I should be able to eat foods that I couldn't eat before ? I have to be more disciplined and proactive regarding my health. I am the only one that can help myself feel better. Since May I have lost my appetite for almost anything. I don't prepare or plan meals for myself. This is going to sound weird, but I don't have an oven. And my freezer is the size of one frozen dinner. I live in a one room apartment with a mini-fridge, a two burner hot plate that I rarely use, a toaster oven, and a microwave. So that is what I have to work with. I don't like canned foods at all and I don't buy them any longer. I don't like frozen foods either. And I have not been eating meat. So, all the food that I buy must be fresh and I must buy it more often because I don't have a freezer and my fridge is small. I know that there is a way to manage with what I have, but I am lazy. I should care about myself more, I just need more confidence and motivation. Gosh, twenty years ago I was a vegetarian and I walked every morning before work and I rode my bike on the weekends. I lived in a third floor apartment so I walked stairs every single day. I squeezed my own orange juice. I ate spinach salads. Now I don't ever take the stairs, when I take out my trash I feel like I just ran a marathon, and I don't take any effort in preparing my foods and eating healthy. That girl from 20 years is just not the same girl that is here now. Thanks for listening and thanks for all of the advice. You have so much knowledge to share. : - )
 
Okay, I was diagnosed with Ulcerative Colitis in 2006, but have had symptoms since 1997. I saw the same Gastroenterologist from 2006-2013. I liked him and I trusted him and I thought of him as a good doctor. In all of the years that I have been sick, no doctor ever told me that the anal fistula that I had and the two rectal abscesses I had were related to my Ulcerative Colitis and I never researched it myself either. I never knew about Bile Malabsorption until I signed up on this website. I never heard of this SCD diet that Jay just told me about until today ( and I saw a Nutritionist at the beginning of May 2014 ). I don't have any kind of education about my own disease. No doctor has ever recommended a certain type of diet I could follow, or a website that would help me out, or anything. The doctors just give me a colonoscopy and give me medication. Stupid on my part for not doing my own leg-work and research to improve my own health. I need to start using this computer I own to access all of the wonderful information there is out there. PS: Jay, I did not know what Pinterest or SCD was until today. PSS: I don't own a cell phone, a Kindle, a tablet and I don't do Facebook. I have a landline phone and this 4 1/2 year old computer. I am about as "low-tech" as you can get. : - 0
 
Hi Luna
I mentioned it to the district nurse and she believes it to be a mass of fistula fluid, highly believes so, doubting very much it was urine - I have been given some litmus paper so if it happens again I can test it.......... Her words were " if you've never had a fistula drained before, you will be surprised how much can come out of it!" I feel better knowing that now and hope she is right - xx
 
imo any animal dairy product is pro-inflammatory. The large quantity of proteins, Enzymes and hormones, minerals (including calcium) contained in them is not fit for humans. The problem is really that their amounts is too high and we cant simply digest properly this overload. a veal or goat baby drink their milk and gain extreme amount of weight within just a year. i cant think that these diaries go in and out of human without leaving a print. I developped chronic eczema very early as a toddler. I wish the dermatologist I was seeing was aware of the few pediatric studies just released at that time which indicated that milk elimination allowed remission in the majority of patients. I feel my life could have been a whole lot different, possibly free of eczema and... CD.
 
Sazzle said:
Hi Luna
I mentioned it to the district nurse and she believes it to be a mass of fistula fluid, highly believes so, doubting very much it was urine - I have been given some litmus paper so if it happens again I can test it.......... Her words were " if you've never had a fistula drained before, you will be surprised how much can come out of it!" I feel better knowing that now and hope she is right - xx
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My first day with setons,I was amazed at the drainage.Very heavy.
 
Ann Morgan-I would recommend reading 'Breaking The Vicious Cycle:Intestinal Health Through Diet' by Elaine Gottschall.
 
how can i tell the difference between an external hemorrhoid and a skin tag?? i have a pea sized lump that hurts slightly when i squish it. this is in addition to a fissure - my 4th technically.
 
Hello all! New to posting so forgive me if I do this wrong but I could really use some support & advice right now.
I have had two vaginal abscesses in the same spot over the last year. I have also had foul smelling discharge. The doctor on call at emerg yesterday said he cleaned out the wound and did not see a fistula.
My question is: Could I have a fistula higher up in my vagina causing the abscess on the outside? I swear I can feel bubbles of air coming out of my vagina and the discharge is heavy and has a "death" smell! I go see a G.I sometime this week.
Any feedback?
 
Hi and welcome.

Sorry you're dealing with this . I've had lots of fistulas and they are awful. I can only give you a general answer...yes. I'm sure someone will be along who can give you a more precise answer.

Sending you my support.
 
Hello,
Ok so this is my very first group and very first post!! I was diagnosed in June. This has been a roller coaster for me!! I am not happy at all about my diagnosis as I am sure you all feel the same! I am even more unhappy because I do not feel sick! Minimal cramping, I have the occassional urgency to get to the restroom! I however was very sick with my bowels in December 14. I was just completeing my 3rd degree with a 3 year old and 3 weeks old, my police officer husband was working crazy hours and I am a nurse who was also working at the time! I was EXTREMELY stressed and abused my body for quite a few months! At that time I was having stomach problems. Then I had some swelling by my labia and went to my GYN who said it was a swollen gland. After draining and meds culture came back neg for infection this happened 4 times over a period of about 5 months. Bacterial cultures were always negative. I was finally send to a specialty hospital then ended up in surgery beginning of june where I was suppose to have my gland removed and a colonoscopy! I woke up with a seton placed!!! and a diagnosis of Crohn's!! I am desperate for answers!!!!! I am under the care of GI who knows I am not excited about starting meds with no symptoms which I still do not have! However the surgeon will not remove seton until I am on medication..specifically remicade! My question is do I really need meds and could one bad spout of severe abuse to your body cause a fistula and still not actually have Crohn's? FYI during my colonoscopy my intestines and colon looked "normal" but biopsies came back with some mild inflammation. HELP!!! ( also they did some blood work that came back indicative of Crohn's- sed rate, CRP, CBC, all normal!)
 
Hi and welcome.

That's one of the very diceptive things about crohns. You can feel pretty normal but the inflammation is doing major damage; in your case a fistula.

Sending you my support.
 
newlydx'd said:
Hello,
Ok so this is my very first group and very first post!! I was diagnosed in June. This has been a roller coaster for me!! I am not happy at all about my diagnosis as I am sure you all feel the same! I am even more unhappy because I do not feel sick! Minimal cramping, I have the occassional urgency to get to the restroom! I however was very sick with my bowels in December 14. I was just completeing my 3rd degree with a 3 year old and 3 weeks old, my police officer husband was working crazy hours and I am a nurse who was also working at the time! I was EXTREMELY stressed and abused my body for quite a few months! At that time I was having stomach problems. Then I had some swelling by my labia and went to my GYN who said it was a swollen gland. After draining and meds culture came back neg for infection this happened 4 times over a period of about 5 months. Bacterial cultures were always negative. I was finally send to a specialty hospital then ended up in surgery beginning of june where I was suppose to have my gland removed and a colonoscopy! I woke up with a seton placed!!! and a diagnosis of Crohn's!! I am desperate for answers!!!!! I am under the care of GI who knows I am not excited about starting meds with no symptoms which I still do not have! However the surgeon will not remove seton until I am on medication..specifically remicade! My question is do I really need meds and could one bad spout of severe abuse to your body cause a fistula and still not actually have Crohn's? FYI during my colonoscopy my intestines and colon looked "normal" but biopsies came back with some mild inflammation. HELP!!! ( also they did some blood work that came back indicative of Crohn's- sed rate, CRP, CBC, all normal!)
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Newly diagnosed, I have only had ever had two significant D flares, that each lasted several weeks, one in 2011 & one in 2013. I found both episodes scared me terribly. The D was significant & I thought maybe I had a bad bug...My first & second colonoscopy were perfect! My bloodwork (ie.CRP) perfect! Yet I have developed three perianal fistulas & now have draining setons in place. The setons must remain in place or it is highly likely another abscess will develop. My GI has diagnosed Crohn's & recommended Humira. I have decided to continue without Humira at this current time & will leave the draining setons in place. I have been D-Flare free so far in 2014. I am currently feeling very unsure & uncertain about starting Humira as well. I am hoping the clear Colonoscopy, clear Bloodwork & 2014 clear Clinical State can be maintained...I told my GI I will go on Humira yesterday at the next indicator...I'm just finding this very difficult as well..
 
I think it's very common to not display the usual Crohn's symptoms. My first symptom was severe joint pain years before my diagnosis. When I am my sickest I seem to have terrible constipation instead of diarrhea. My latest flare, which has been ongoing for 2 years now, my only symptom was peri anal abscess and the fistula that formed. I was badly anemic without knowing it but inflammatory marker labs normal. I drug my feet and didn't start remi for a year. Eventually my CRP was elevated and even with plugging fistula didn't close. Even after start of remi I formed abscess and fistula #2. My best advice is if the GI thinks it's time to treat aggressively do it sooner instead of later.
 
hi everyone - any anyone suggest preventive ways to not get an abscess again? I am 4 weeks post fistulatomy - in the itching stage ;/.. I am taking benefiber.. I drink loads of water and fruits and veggies. Just want this to heal properly and not have it happen again!
 
Hi All. Well I've had fissures for so long now. I first had one @ about 6yrs old that required surgical intervention, then again when I was 24.
I now have multiple fissures, fistula & hemorrhoids. I've been sitz bathing for ages with a degree of success but lately things have become very problematic, with flattened stools & bleeding.
I get very depressed about this as having a stoma fitted has been mentioned to me more than once.
I saw my specialist on Monday & he put me on Ciprofloxacin, its making feel low & affecting my stomach & worse of all I'm passing bloody stools & clots(one with a diameter of about 2 1/2").
After reading the pamphlet before I started on the course I see that rectal bleeding is a problem & I should stop taking it.
So I'm not doing my next two doses & contacting the hospital tomorrow.
Rgds
Grant
 
i have multiple fissures right now also. i am recently diagnosed, its been about 6 months now. the diarrhea from the flare is preventing healing i think, nitro and baths help a bit, uceris healed one for me a few months back
 
Recently diagnosed with bilateral perianal fistula's, no crohns or anything that I know of going to see a surgeon in a few hours, very nervous about where this journey will take me and in awe of everyone who takes the time to share their experiences and knowledge! So thankyou all, you're tough people. Wishing luck to you all and thankyou for the opportunity to talk to people in a similar circumstance <3
 
i had a violent/large bm about a week ago. since then there has been a bad pain on the opposite side of my fissure, where the first fissure was. there is also a small lump just on the inside. is this an abscess? can someone describe what an abscess feels like? ill be calling my doctor tomorrow the pain is too much.
 
Sounds like an abscess to me. The best way I can describe the pain would be to say unbearable. Walking, sitting, almost any movement makes it worse. And it does feel like a lump or bump under the skin. Definitely get to the dr. Draining it will give you relief. Good luck!
 
I stopped taking Ciprofloxacin last week, I felt pretty rough & the bleeding was bad.
Anyhow I spoke to my Specialist Nurse & she had a chat with the Gastro specialist & they've put me on Flagyl Suppositories & Pentasa Suppositories. I did use the Pentasa ones before with little joy, hoping the Flagyl ones will help but major problem is its so sore down there. Both have to be administered @ night so not looking forward to that tbh.
The things we do eh.
Oh & looks like I'm going back on Azathioprine in the not too distant future.
Grant
 
I have had my setons for three months now.I see my colorectal surgeon next week.Except for occasional bleeding they seem to be doing o.k..It is still quite uncomfortable to sit for lengths of time and get in and out of vehicles.Other than that,I guess I'm getting use to them.

I know hoping to hear how long they will be in at our next meeting is ambitious,but I'll ask.They are still draining.The three setons are knotted together.I have a notebook full of questions written down to ask him.

I have five fistula but he only put setons in three of them.The other two haven't gotten worse.I think I'm starting to feel better since starting Remicade.My next infusion is my first one at the eight week maintenance mark.I still get very fatigued at times but my good days are more frequent.I thank the SCD for a good part of that.

I'm prescribed Canasa each evening,is that common with fistulas/setons? How do I know it is helping me?
 
Dave sounds like you've had some improvement. I started with 2 setons and had one removed a month ago. For the most part I'm comfortable now. No drainage at all. If your still draining I doubt surgeon will want to remove the drains. I've got a few Remicadee infusions on you so maybe with more you will see a greater improvement. Just keep taking it one day at a time.
 
fissure2 said:
i had a violent/large bm about a week ago. since then there has been a bad pain on the opposite side of my fissure, where the first fissure was. there is also a small lump just on the inside. is this an abscess? can someone describe what an abscess feels like? ill be calling my doctor tomorrow the pain is too much.
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The first rectal abscess I had was in 2002. At first I just thought I had a painful hemorrhoid. I waited three days. By then my pain was excruciating. I walked into my Primary Care Physicians office ( without an appointment) sobbing. I saw him immediately. He prescribed me some pain medicationsfor one day. The next day I had an appointment with a General Surgeon. There I was in her waiting room in terrible pain, sitting on a "donut" pillow I had purchased at a local drugstore. I had driven my own vehicle to the appointment ( sitting on the "donut pillow" ! ). After examining me, the General Surgeon sent me right to the hospital. I was admitted to the hospital and had the abscess surgery early the next morning. The nurses gave me Demerol shots about once an hour until I went into surgery. I had not yet been diagnosed with Ulcerative Colitis. The next day I drove myself home ( I had no one to pick me up ). I had some aftercare at home and then returned to work in two weeks.

The second abscess I had was in 2009. Since I now knew what a rectal abscess felt like ( after the 2002 abscess ), I drove myself to the hospital emergency room ( knowing that I did, indeed, have a rectal abscess ). I was right about having the abscess and they admitted me to the hospital and I had the surgery the next day. The second time around I did not have the pain like the first time, because I recognized the symptoms and took action immediately.
 
Maxwelljax said:
Dave sounds like you've had some improvement. I started with 2 setons and had one removed a month ago. For the most part I'm comfortable now. No drainage at all. If your still draining I doubt surgeon will want to remove the drains. I've got a few Remicadee infusions on you so maybe with more you will see a greater improvement. Just keep taking it one day at a time.
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Yeah,I'm still draining.Not nearly as much,but still draining.I think back to the fistulotomy three months ago,the drainage was so heavy.I understand I will have them for awhile,as long I am moving in the right direction.

Hopefully I will continue to benefit from the infusions.I have more energy for longer periods of time.I still have my times when I have the hit the wall feeling,but I am having more better days than bad days.I know that can change but this is the best I've felt since my resection almost a year ago.

Hopefully you will be able to have the other seton removed soon.
 
i dont think mine is an abscess, but i will get it checked out. its a swollen soreness feeling after i have a bm that goes away in 20 min or less. i leak mucous from inflammation, it does not smell terrible like an infection.
 
I met with my colorectal surgeon yesterday,a three month post fistulotomy visit. I had a notebook of questions that he patiently answered and was happy to see me have.He encourages his patients to write down questions between appointments and be proactive in our treatment.

There is no sign of infection and he is happy with how 'everything looks'.I asked about clips and he says he does not use them because he feels they come loose easier.His words,not mine.I asked about Entyvio,he advised me to talk with my GI because the GI knows more about it than he does,being a new drug.

He says I'll have the setons for at least a year,possibly longer.Usually he removes one seton and than six months later,another,etc..H,m,m,m. I have three setons.

There was no sign of new fistula forming,woo hoo! I've gained seven pounds since my last visit.Maybe I'm absorbing the nutrition in my food better now.

I feel I am benefiting from the Remicade,I just don't want to be on it for so long.My doc said after the setons are removed I will continue infusions for a while.What are others experiences with this? The time frame we are talking about is years. I'd hate to regress,but I am apprehensive about such a lengthy treatment of Remicade.

Remicare is helping now.If I think about the $$$ in the future and no assistance...I want to roll up into a ball and cry.One moment,one day at a time.

Doc said I don't have to use Canasa after this prescription runs out.Very nice.I still have three weeks worth though,damn.That will help reduce monthly expenses some.Once I stop Canasa I will see him in two months.I'm already paranoid about NOT using Canasa.I'm so freaking wishy washy at times.I worry as soon as I stop a med the reason for needing it will come back with a vengeance.The specter of doubt always behind any promising news.

All in all the appointment went well and was encouraging.I see my GI in December.My PCP seems to be someone I seldom see now a days,I don't see him until next March.My other doctors keep him in the loop.
 
Wow Dave - A whole year! Do the setons stop you from doing things?

I had two lumps show up in both of my bumcheeks - currently on Flagyl and Augmentin Duo which has stopped the 'fluid collections' from painfully swelling but it's still uncomfortable to sit. I was sitting on a computer chair at my uni the other day and had some sort of clear fluid come from somewhere - quite a bit of it, didn't even feel it and the lump on one side feels alot smaller now - i think i may be able to feel a skin opening on that side but not being able to see a thing down there makes it hard to tell - but I havent had any fluid come out since.

I've had an ultrasound and an MRI whose results both say 'fistula'. My general surgeon doesn't believe it connects to my rectum so he wanted to try to aspirate the bilateral fluid collections that I have with ultrasound guidance but he also gave me a referral for the colorectal unit at my local hospital upon my request. I find it strange that he disagrees with the mri findings (which diagnosed me with a transphincteric fistula) and I'm very confused but I do think he is trying to avoid doing any damage. He said he does not want to create openings into my rectum if they are not already there. I think he is hoping if he aspirates enough of the infection that it will heal itself. I have another appointment with him in a month incase I don't get to see anyone at the hospital by then.

I have some anxiety over maybe needing setons as I am already finding the inability to sit down with ease extremely frustrating and I imagine they would not be comfortable. I was planning on going to see family for christmas but the 9 hour car trip would be impossible at this stage :/

Glad to hear some positive news about your treatment though! I hope it continues to swiftly improve for you :)
 
Finally, made a decision to move on to Remicade with a start date & first infusion appointment made. I've been dealing with my first perianal abscess since 2012 & unfortunately, subsequent abscesses, fistulas & setons...After much uncertainty, serious deliberation, significant dietary changes, supplements & helpful Forum insight, I've finally reached a decision point.
 
Maxwelljax said:
Good for you! It's a tough decision. I too put it off for more than a year. But I don't regret it.
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I guess it was important for me to work up to my decision at my own pace : ) My GI wanted me to start right away but was very patient with me about my slow deliberation!
 
I understand completely. Just remember it's a slow process especially with fistulas. Some have gotten immediate relief from symptoms but the fistulas respond much slower. So don't get discouraged.
 
Hi Sparkx,welcome to the forum.My setons don't stop me from doing things.I have to rethink how I do some things.I even ride my motorcycle.I'm not saying they don't cause discomfort,they do.Yes,sitting for extended periods can be a challenge.

I recently took my first long car trip to visit family,four hours.I was very nervous.I drove the entire way and stopped periodically to give my butt a break.It went pretty smooth.I was very careful with what I ate or drank a day or so before the trip so there wouldn't be any bathroom issues from any traveling stress.It worked for me.I always carry an 'emergency bag' with me-clean underwear,sterile pads,etc. for any just in case situations.

The setons are far less painful than the fistulas before the fistulotomy.The fistulas made it painful to sit and even walk at times.In my opinion,from what you describe,you would be more comfortable as well.My fistulas would swell and eventually break the skin and ooze because they were infected.It was gross and quite painful.If I knew then what I know now,right?

Going to a specialist is key.A GP is not for this situation.You need to have the fistulas tended to.The longer they are untreated the greater the chance for damage.My surgeon explained the procedure and the importance of opening the fistula enough to clean it,but not to the point to affect continence.A fine line,he seems to have done well in my case.

After three months getting in and out of a vehicle is the one thing I have difficulty with.The motion tugs at the setons every time.I consider that a minor inconvenience.Yeah,they are a bit inconvenient to keep clean.Considering they will hopefully help me avoid a colostomy,I'll grumble away as I do what I have to do.Honestly,unless I'm getting out of a vehicle,you wouldn't know I had setons.I go for walks,hike,swim...if they get sore,I scale back.

My rambling answer for 'No,they don't stop me from doing things.' I bet if you had setons you could make that nine hour ride with a bit of planning.Feel free to ask me any questions.
 
Hi sparksout
I second everything Dave 13said,
I had a seton put in about 6weeks ago I was very apprehensive like you.
It was way easier than I had feared and I am so much better now that I regret having put it off
I take augmentin. there is virtually no pain or drainage now and I feel way better.
my WBC had spiked with the constant abscessing etc. and am planning a thanksgiving car trip
 
I'll tell you what...Fistulas suck!! "That's all I have to say about that"
I've had a fistula for over a year now. How long have you all had one? do you know how long they are supposed to last? Remicade has helped a lot with pain a but I haven't had many changes in a long time. I'd love some feedback. Thanks
 
Jay Woodman said:
Finally, made a decision to move on to Remicade with a start date & first infusion appointment made. I've been dealing with my first perianal abscess since 2012 & unfortunately, subsequent abscesses, fistulas & setons...After much uncertainty, serious deliberation, significant dietary changes, supplements & helpful Forum insight, I've finally reached a decision point.
Click to expand...

Good luck Jay. As tough as it may be, it is one of those benefit outweighs the risk type decisions. I sincerely hope Remicade works for you and that you get and feel much better.
 
Finished the course of Flagyl Suppositories, nearly gave up because I was feeling so rough. Having very loose BM's still. Here's hoping its done some good.
Azathiprine put on the back burner due to me having 2x Squamous Cell Carcinomas in the last 15yrs.
Rgds
Grant
 
acrohn42 said:
I'll tell you what...Fistulas suck!! "That's all I have to say about that"
I've had a fistula for over a year now. How long have you all had one? do you know how long they are supposed to last? Remicade has helped a lot with pain a but I haven't had many changes in a long time. I'd love some feedback. Thanks
Click to expand...

Two years for me but only discovered this year, but I know something was amiss for quite awhile. No idea ref longevity. Hope you get some relief.
Rgds
Grant
 
acrohn42 said:
I'll tell you what...Fistulas suck!! "That's all I have to say about that"
I've had a fistula for over a year now. How long have you all had one? do you know how long they are supposed to last? Remicade has helped a lot with pain a but I haven't had many changes in a long time. I'd love some feedback. Thanks
Click to expand...

I went undiagnosed for close to ten years.I even had a colonoscopy and that GI didn't say anything about them.I assumed since he didn't say anything they were just really bad hemorrhoids.I almost lost my rectum.
 
hey everyone, I have my second temporary ileostomy because of a fistula and active disease in the rectum I had a total colectomy in 2011 with a J pouch when they thought I had ulcerative colitis it has since been proven that in fact I have Crohn's disease and now I've had to have another hopefully temporary ileostomy put on but I'm being plagued by an abscess the first time I had one was a couple weeks after the ostomy was put on they did a JP drain and put me on antibiotics and it went away however they took the drain out two weeks later when I still had quite a bit of infected looking fluid coming out, and then 10 days after they took the drain out I was back in the hospital with another abscess this time they said it was too small to put a drain in but they gave me IV antibiotics and then sent me home with more antibiotics. It went away again and then 5 days after I stopped my antibiotic course it came back it's now back for the third time I've been on antibiotics for 2 days and it's getting worse pretty quickly, it hurts, if I can bear to press it hard enough I can express pus that comes out underneath my stoma has anyone had any experience with this?
 
Today is one week exactly post anal fistula surgery, honestly I feel like I am worse than before my surgery.. First off my surgeon cut in a completely different place than where my fistula was and left a bruise and open cut and I can still feel the lump where the fistula I went in for is so I am not sure if there was more than one or what happened.. But the issue I went in for is still there, I tried to get ahold of the surgeon and found out he isnt even from the area so to get a follow up to make sure things are okay is not possible
It hurts for me to sit, basically I lay with a pillow under my knees to help ease the pain, and when I stand or walk it feels like so much pressure is being put on the wound area
Often when passing gas the area fills with air (most painful ever) and it is still draining fluids
Does anyone have advice on how long the pain will last, average healing time, if this much pain is normal,
I am also a full time student in college and so I am stressing about healing time as I am scared about getting so far behind that I end up getting kicked out
Apparently for student loans as well, Crohn's is NOT a permanent disability.. I honestly dont get that at all! Because I look fine on the outside doesnt mean I am fine.. I feel like I am being slowly tortured and dying from the inside out
 
I'm sorry to hear you're feeling worse. How long have you been dealing with this?
Has the doctor tried you on biologics.

Sending you my support.
 
Hi Red
I don't want to upset you anymore than you are - but I want to be honest too - but I'm 7 weeks post fistula op and still having the wound packed daily at the doctors, still draining and still in pain.
From what info I have gathered, every person and every fistula is different.
However, I was able to sit normally ( well with a cushion ) after 2 weeks and carry on my life as normal as you possibly can with a draining fistula.

Sometimes we really have to convince ourselves of "mind over matter" and not let these things take over our lives, because they damn well try to!
Good luck and stay positive xx
 
Hi all I am 7 weeks post fistulatomy. I had an abscesses that turned into a fistula. So, after BM and if I sweat during workouts i still itch in that area. Is that normal 7 weeks post surgery?
Does anyone if baby wipes are good to use for the area?
 
i use baby wiped for mine. Sometime I itch from the drainage. Calmoseptine or other barrier creams are helpful for protecting your skin
 
Hi red:
I had an anal fistulectomy in 1992. My recovery was not long or complicated. I had to use the sitz bath regularly at home. I do have a lot of scarring according to any doctors that happen to see that area down there. 1992 was a long time ago, so that is all I can remember. I DO remember that I disliked the doctor that did the surgery and wish I was smarter at the time. I could of had a second opinion or chosen a different colon rectal surgeon. I feel, that sometimes for me doctors tend to go to the operating room too fast. I currently have no issues with the area from that old surgery. But I have had two rectal abscess surgeries since then. I remember after the first abscess surgery I missed two weeks of work. Believe it or not, a nurse came to my apartment once a day for two weeks to clean and repack the abscess area. I think my first abscess was the most painful thing ever before I had the surgery on it. Please take it easy and get plenty of rest. We all care about you.
 
Need tips suggestions please. I will have a colonoscopy next week, but I currently have 2 setons in place. Is this going to be a problem? What if the seton tears or got dislodged? I am also worried that the diarhea due to the prep will hurt the fisutla. Anyone had this experience? Thanks
 
Red89 said:
Today is one week exactly post anal fistula surgery, honestly I feel like I am worse than before my surgery.. First off my surgeon cut in a completely different place than where my fistula was and left a bruise and open cut and I can still feel the lump where the fistula I went in for is so I am not sure if there was more than one or what happened.. But the issue I went in for is still there, I tried to get ahold of the surgeon and found out he isnt even from the area so to get a follow up to make sure things are okay is not possible
It hurts for me to sit, basically I lay with a pillow under my knees to help ease the pain, and when I stand or walk it feels like so much pressure is being put on the wound area
Often when passing gas the area fills with air (most painful ever) and it is still draining fluids
Does anyone have advice on how long the pain will last, average healing time, if this much pain is normal,
I am also a full time student in college and so I am stressing about healing time as I am scared about getting so far behind that I end up getting kicked out
Apparently for student loans as well, Crohn's is NOT a permanent disability.. I honestly dont get that at all! Because I look fine on the outside doesnt mean I am fine.. I feel like I am being slowly tortured and dying from the inside out
Click to expand...

I am sorry to hear that! I had an abscess which a doctor cut twice (since he did it wrong the first time) and it turned into a fistula. I later had surgery on that and I hear ya, it does not seem much better. My pain and everything did not get any better after the surgery until several months later I went on Remicade. Are you on any meds? And I too am a college student. It puts a huge burden on everything and it is definitely not the thing you want happening in college! I've had a draining fistula for over a year now.
 
Harper05 said:
Hi all I am 7 weeks post fistulatomy. I had an abscesses that turned into a fistula. So, after BM and if I sweat during workouts i still itch in that area. Is that normal 7 weeks post surgery?
Does anyone if baby wipes are good to use for the area?
Click to expand...

YES! I have that problem. After working out it gets terrible. Its hard to get exercise when that happens. I would say try a barrier cream. My doc had be try over the counter Calmoseptine ointment. It works very well! I would give that a try. You can use it after BMs too
 
Polar bear said:
Need tips suggestions please. I will have a colonoscopy next week, but I currently have 2 setons in place. Is this going to be a problem? What if the seton tears or got dislodged? I am also worried that the diarhea due to the prep will hurt the fisutla. Anyone had this experience? Thanks
Click to expand...

I had a fistula during that process and it was a bit rough the prep day. The actual going to the bathroom part is not too awful, but with the fistula it was difficult. It became painful and I just didnt want to go anymore. I wish I had suggestions, but I just want you to be prepared.
 
Red89-I had a fistulotomy about 4 months ago.That first week I had to use menstrual pads my drainage was so heavy.I stiil use 4x4 sterile pads.

I still have discomfort at times.When I get in and out of vehicles,sitting for extended periods,etc.,but not too painful.I know we get use to certain levels of pain,but this is more discomfort than pain.

Easy for me to say don't stress about college while you are healing,isn't it? Perhaps coming to the forum and having a rant can be a pressure release valve for you.Help you move forward with healing.
 
Thankyou everyone for your support and understanding, currently I am not on any meds.. I had a major bowel resection in 2005, stayed on meds for a short while and then I decided that all the risks were not worth the somewhat containment of my Crohn's disease.. Honestly I hate even taking advil for a headache! Today feels like a good day for me and I was able to do some homework at home, laying on my bed of course.. But I have been re booked for another surgery appointment with a different surgeon now, apparently the last surgeon did not leave good enough notes for my doctor to even know exactly what he did.. My doctor mentioned getting a ct scan so they can try to see how many there are and find a best option to getting it done right this time.. As for college it looks lime I may hav to drop out until I am healed up
 
Glad things are looking somewhat brighter, Red. Talk to student services at your college - they should be able to help. I was diagnosed when I was in my 2nd year of university and had to get some major extensions and exemptions, but I was able to save the credits.

I had a fistulotomy and 2 setons placed in December. It took 2 weeks to feel somewhat human again, and sad to say, they still drain. I did have the setons removed in July, but they are not fully healed.

For the person who asked about drainage and exercise - I echo the barrier cream suggestion. I usually use Penaten. I also use large gauze pads (from Target) folded in half and shoved in my butt crack to catch the drainage.
 
One of the comments on here reminds me of 1992 when I had to have an abscess drained twice. The second time they had to give me IV drugs.

2
 
I am 43 and have had Crohn's for 30 years. Had my first surgery when I was 18. Doctor just told me that I have Fistulas which are attaching to my abdominal wall and appear to be abscessing. Just put me on antibiotics and wants me to meet with a surgeon. Anyone been through this before? This is a first for me and I am a little bit overwhelmed...I was feeling pretty good and they had me do an MRI yesterday and now this info comes back.
 
Chicago12 said:
I am 43 and have had Crohn's for 30 years. Had my first surgery when I was 18. Doctor just told me that I have Fistulas which are attaching to my abdominal wall and appear to be abscessing. Just put me on antibiotics and wants me to meet with a surgeon. Anyone been through this before? This is a first for me and I am a little bit overwhelmed...I was feeling pretty good and they had me do an MRI yesterday and now this info comes back.
Click to expand...

I also have a fistula along with an abscess and am being booked for an MRI, the surgeon refused to do surgery so now I am on two different antibiotics, pentasa, and prednisone a total of 28 pills a day.. Hoping the MRI doesnt say things are worse than expected.. I feel for you! And wish the best comfort for you
 
So that is the part that I don't understand. What are our options? Just keep taking pills or how does that work? I assume they want the infection to go down before doing surgey right?
 
Hi I'm new to this forum but not new to the rectovaginal Fistula. I have been suffering for 6 years now. I have had 3 previous surgeries to try to close it but all 3 times failed. I recently had a 4th surgery and I am 4 weeks into recovery. I am still not able to sit down without being in pain and unable to have bowel movements without pain afterwards. The puzzling thing is that i don't have Crohns or any other diagnosed diseases that usually cause this. Is there any one else that has had the same experience?
 
I have not had that experience (male), but I am sorry to hear the discomfort you are going through. I am sure everyone on here can relate to your troubles.
 
This has been a pretty rough road, diagnosed 40 years ago. 18 years ago had all but 8" of large colon removed. Regular dealing with Crohn's for the next years. Sept. 21, 2013 had a large abscess (near belly button) burst, still draining, had 2 hernia repairs previously which involved placing mesh which has broken and still have a large hernia caused by the original surgery. With the abscess still leaking, even more lately, I believe my surgeon has no idea how to fix this, they are not sure if it is a Fistula or Abscess. Started Remicade just after Christmas, amount was doubled in September, but not much improvement so far, better BM's at least only 2-3 per day, lots of aching and not much of a life, can't lift or do anything too strenuous and very tired, also on Imuran and taking a couple of probiotics daily. For all the years, have been very careful with diet and since original surgery have avoided prednisone. Lots of my join pain I'm sure has resulted from all the steroids.
 
Hi everyone, I have written on here a few times... I don't have crohns, I had perianal abscess then a fistualtomy on sept 12.... I am still itchy in that area when I sweat... I finally worked up the courage to look at it, and it looks like it's still open... Normal to still be open 2 months post surgery? It's very tiny, but I can see it...and feel it when I sweat!
 
@harper05 i've had my fistula open and draining for a year and a half after surgery...and yes you definitely notice it more during exercise!
 
Harper05 said:
Hi everyone, I have written on here a few times... I don't have crohns, I had perianal abscess then a fistualtomy on sept 12.... I am still itchy in that area when I sweat... I finally worked up the courage to look at it, and it looks like it's still open... Normal to still be open 2 months post surgery? It's very tiny, but I can see it...and feel it when I sweat!
Click to expand...

Do you have setons?
 
Hi guys, I was wondering if you could help me. I have been diagnosed with an umbilical fistula that I have been showing symptons for, for about a month now. I had a CAT scan and fistulagram done (where they put catheter into my belly button). I do NOT have Crohn's or any other conditions and none of the doctors I've spoke to know what caused it.

What's been the most frustrating for me is I have found very little information online on umbilical fistulas specifically and am not sure what the best course of action is. It's also been very difficult to find any doctor that is actually familiar with umbilical fistulas (as opposed to anal) and many doctors I have called have never in their career operated on one. In fact, several have doubted I even had it until I explained the procedures I've had done. The doctor I found specializes in colon and rectal but he is the most experiecned I could find on umbilical fistulas.

It's approximatly 2.5 centimeters wide and is deep in my soft stomach tissue. Fortunately it's not communicating to other bowels or organs. My doctor is recommending I get surgery to completely remove it as soon as possible. He says even though surgery is commonly known as a last resort, there's no point in waiting long because it's not going to go away on its own. I have December off from work so it would give me a long recovery time to do it now.

I had a REALLY bad infection from it and actually passed a very large buildup of hardended discharge through my belly button, which was the most pain I've ever experienced. The doctors I've seen have never heard of that happening before. My infection is cleared up but I still have abdominal pain, my belly button is still painful and I can't run or bend without some pain.

I'm very confused on what should I do. Should I get the procedure right away? (I have a tentative date for next Monday, Dec 1 but I can cancel it) or should I just wait? My fear is getting another bad infection. The doctor said the worst case scenerio is another build up developing in my body but getting stuck or clogged and not being able to pass through my belly button. I've seen a regular doctor from a clinic and a general surgeon and both have said the only option is surgery.

However, I've seen on this board people waiting months and even years before surgery so I am very lost on what to do. Any advice would be helpful! I feel so helpless because this came out of nowhere, no one knows why it happened, and I can't really find any in depth info on this specific type of fistula to feel really educated to make an informed decision.

It seems like my choices are to get surgery to get it removed completely, or wait to see if the infection (which was excruciating pain) comes back and possibly worse?
 
Hi Mark and welcome.

I'm at a loss. Is their a down side to just getting it done?
Hopefully someone will be along who can help.
 
Thank you for your response! I guess the downside for me is just surgery in general and having to be cut open and go through my stomach muscles to get the fistula out.

My fear is what if the infection never comes back again and I'm cutting myself open for no reason. I'm also not sure if I should wait longer because I've read some of these do close up or go away on their own? Also, am I just not talking to the right doctors and IS there some sort of medication for umbilical fistuals to prescribe that could help it go away? Is a month of symptoms too soon? I don't want to feel like I'm rushing into the most extreme option.

I guess I always have felt like surgery is the last resort, but so far all I've heard is just cut it open now and I am not hearing alternatives. Basically, my doctor said, "do it now, do it six months from now, either way the only option is surgery." It could very well ve true, I'm just curious if there's anyone who has had luck with something else.
 

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