Every 8 weeks.Oh wow! That is very expensive. How often do you get it?
:thumbdown:my infusions are $13,000(US currency) per infusion.Not right.
Hello. I am not familiar to umbilical fistulas, but I personally think you should go ahead with the surgery; as long as you are confident in the surgeon and his "abilities". Since yours is located on your abdomen I think it is less risky. The reason anal fistulas are often not operated on is because any cutting or excisions create a risk to damaging sphincter muscles. It is also a bad place to promote healing. I think your chances are favorable getting the procedure done. Hope this helps! Let me know what you think.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 everybody. Back in July, I noticed that my bowel movements were being painful. I thought it was maybe a fissure but the pain got worse and worse. Then one day, after a bowel movement, I noticed lots of blood in the toilet. The relief was immediate but I was draining blood constantly. I went to the ER where they told me that I had a perianal abscess. They said all it could do was let it drain. A month passed by and I was still draining. I found a colorectal surgeon who said that I had a fistula. He laid it open a bit to see of that would help with the drainage but it didn't really solve anything. 2 weeks later, I got fistulotomy surgery. It's been 2 weeks and the wound looks like it's healing. My question is, is it normal to have a lot of blood after a bowel movement? I've been keeping my stool soft from eating lots of fiber but it doesn't seem to be making a difference. Some days it bleeds and others it doesn't. I only have one bowel movement a day but I hope the bleeding of the wound will not affect it's healing.
I do not know if it is necessarily normal, but I bleed 80% of the time I have a BM. The fistula is a tough thing to understand. Sometimes it seams to be healed and not much of a bother, other times it is like hell. Do you notice any clot-type blood that ever comes out?
Sorry to hear what you have to go through to have this properly taken care of.This disease is determined to make nothing simple for us.I saw my colorectal surgeon today and he explained to me the dangers of an untreated abscess.Left untreated fistulas can form from the abscess and go in different directions,damaging the muscles around the rectum.Yes, thank you; I definitely do not want to wait. I waited for the first one and it was a horrible decision. My only problem is my surgeon is over 2 hours away and I have to go through getting referred and everything. Horrible timing too. Last week of classes then finals next week.
Yes. I hate the wait game. I got in to see the surgeon friday afternoon. This is not asap, but I guess I have to deal with it. My GI put me on flagyl and cripro in the mean time. I've never used it before and not sure what it'll do to help. Hopefully I can last until friday.Sorry to hear what you have to go through to have this properly taken care of.This disease is determined to make nothing simple for us.I saw my colorectal surgeon today and he explained to me the dangers of an untreated abscess.Left untreated fistulas can form from the abscess and go in different directions,damaging the muscles around the rectum.
I asked him to show me on a poster in his office where exactly my fistulas/setons are.I wasn't sure how deep they were,etc..
Hopefully your surgeons office will be able to work with your schedule.Especially considering your traveling distance.
We are all here to support one another.I'm really glad there are groups like this! I'm 19 and was just diagnosed with crohns about a month ago so it helps to know I'm not alone.
Friday is not too long to wait.It would be nice if it was sooner,but at least it is this week.Hurry up and wait is something I think we all relate to.Yes. I hate the wait game. I got in to see the surgeon friday afternoon. This is not asap, but I guess I have to deal with it. My GI put me on flagyl and cripro in the mean time. I've never used it before and not sure what it'll do to help. Hopefully I can last until friday.
If it's still open it might drain a bit.Well is drainage 3 mos post surgery normal
do you have setons?Well is drainage 3 mos post surgery normal
Have you had trouble since the abscess? You have had this for twenty years,has it always troubled you? As far as cleaning my fistulas/setons I find a hand held shower head to work well.I have a deep scar from an abscess from twenty two years ago. Would it hide some of my feces and also make it harder for me to clean myself? Thanks.
I just had my 19th surgery at Mayo clinic & happy to be alive. I had an abscess with sepsis & developed 2 fistulas after surgery & Dr's were debating if another surgery was needed. I ended going back on Cimzia & within 2 weeks the fistulas were gone. I had a draintube in for 92 days & when radiology would scan me, you could see the 2 fistula connections to my abscess that was being drained. They ended up finding cancer tumor too. I had my 1st 1 year remission in 15 years, went med free for that year & that was my biggest mistake ever cause my flare was the worst! Dr's say I'll never be able to be off my meds. My eye problems should've been my 1st clue, but had no idea that was possible. Uveitis, inflammation of the eye. I'm so thankful to be alive, I usually bounce back from surgery, but not this time! Think it was the sepsis, had to scrape my insides & bones.
Jano,The permanent ilieostomy is actually a relief. It is an awful to get your head around both physically and emotionally, but once I got to the point of having everything fail. I had seasons and fistulas splayed open, been on remicade that nearly killed me. The reaction saw me helicopter retrieved to a capital city and being in a coma - not a good thing for m kids and husband to go through!
Basically my rear end had sprouted so many fistulas it was more like a watering can (CRS description). I also had rectovaginal fistulas that were just down right depressing, and had started developing a labial abscess. As you can imagine both painful and embarrassing.
I had the surgery in August last year, and whilst the rear wound is being a little problematic, the Stoma itself has actually given me freedom and my life back. It may be somewhat different than before but it is much better. Everyday I accept the Stoma more. I am back at work, can actually go swimming, have an alcoholic beverage if I desire. I know longer scan for the toilet as soon as I enter a building. The only things I am yet to do is cycle as me rear wound is still being packed and draining.
So from here on in it is onwards and upwards. I now share my life with my new friend, my Stoma. She is lovingly revered to as Miss Piggy in our house.
Remember though, this is a worst case scenario and even so it is actually a huge relief.
Cheers
Jano
This sounds like me, but I have an ileostomy & had an allergic reaction to Remicade. It has made my life so much betterHearing you all loud and clear. My fistulas and abscesses got so bad that I have recently had my rectum and anus removed and have a permanent colostomy. So far all ok except for one abscess in my psoas region that keeps returning and is stopping the healing of my butt wound.
None of the medications worked and I had an anaphylactic reaction to infliximab( supposed to be best for fistulas) so I had no option as my CRS put it ' that is one wrecked rectum'. Have to say I don't miss being in tears with every BM and having up to 30 BM's a day.
I hate fistulising Crohns!!!
It is very depressing, and depression should not be ignored, I have had 7 surgeries in 5 years to close the same fistula, I'm now taking a break, got an ileostomy in jan of 2014 and it has improved my lifestyle - i eat and drink whatever I want now, no embarrassing odors leaks or noise from the vaginal area - I think a trade up. I like you was/am feeling pretty upset - the rollercoaster ride is long - but there are success stories here and I keep searching for them hoping to find my answer.Hi everyone, I'm new to this forum & group. I joined today after having unsuccessful surgery for a rectovaginal fistula a week ago & feeling pretty upset with the whole damn Crohns misery. I have reading alot of posts since joining & realise I'm not alone in this world. Would luv to talk to other women in my situation. X
Remicade/Humira are often good for fistulas. I actually travel up to Rochester to see a surgeon at Strong. His name is Rabih Salloum- he is good and I suggest him if you have any questions about surgery. Or see Bastian Domajnko- hes another Colorectal surgeon. Both good guys. Best of luck.Dave, thanks for answering! I just am confused and trying to understand what's going on in my gut. What can they do for fistulas? I am on Pentasa only right now and my stomach is feeling more pain now.
Perhaps if you start a thread with Biolift operation in the title it may get more hits versus being in the support group section. Just a suggestion.Hi all
I am relatively new here and would like to hear your views.
I am due to have the Biolift op to hopefully repair my anal fistula! Has anyone had this procedure done? I have had 13 fistula and abscess surgeries in the last 22 months and i currently have a draining seton in.
Welcome.:rosette1::rosette1:Hi all
I am relatively new here and would like to hear your views.
I am due to have the Biolift op to hopefully repair my anal fistula! Has anyone had this procedure done? I have had 13 fistula and abscess surgeries in the last 22 months and i currently have a draining seton in.