abscess with fistula?

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73monte
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   Posted 12/20/2008 11:31 PM (GMT -6)   
I have another post going about my daughter recently being admitted to the Hospital with and abscess on her small intesting, (terminal illium). The abscess has been drained, and has a drain left in for a few days, also on IV antibiotics. The big concern seems to be the fistula, which is attached to the sac. Is there anyone with alot of experience here with this sort of thing, that can outline usual pattern with these. The GI says that it will likely heal, and is trying to be positive about it, but I keep reading that they are a real problem. 
My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Initially, 9 weeks of Prednisone, currently taking 2000mgs of Pentasa.


gachrons
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   Posted 12/21/2008 6:04 AM (GMT -6)   
Hi Monte I have not a lot of experience with fistula's but did get two .If her GI is saying he thinks it will heal on it's own that sounds good. I think it's a wait and see thing with them sometimes. If it doesn't then you may be looking at meds or surgery. A lot of peoplesemm to have a problems with perianal ones .When I had my abscess they said it wasn't attached to the intestine but they did more testing later and of course I got one after I had surgery but I think it was there all along and they had told me of that possibility .Crohn's isn't a quick fix it takes some time to get better and the body to heal. Doctor's can only do what we must do and that's to give the body time to mend or other considerations that might need to be done. Hope this helps some and will be keeping good thoughts going your way. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


73monte
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   Posted 12/21/2008 8:57 AM (GMT -6)   

Thanks Gail,

Having the fistula, is a whole new thing for us, and I feel like I'm starting from scratch again trying to understand this. If it was just inflammation, I'd feel fairly positive about the med's correcting the problem, and maybe get back in remission for hopefully many years. 

My big problem right now, is I can't seem to get a realistic grasp on just how complicated this fistula can get. From the way I understand it, with the fistula there, isn't there a good chance that it can keep filling with waste and create another abscess? This could go on forever. It would be an endless cycle. They haven't mentioned surgery yet, but is that the only way to really deal with these.

The one thing about our GI and the clinic we go to is, they're very cautious when giving a prognosis, have been from day one. That just seems to be part of their approach. It's always wait and see type of answers. Being the analytical type that I am, it drives me absolutely nuts! Even if they gave me some sort of percentage, or some concrete opinion, even if it wasn't good news, at least you know. 


My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Initially, 9 weeks of Prednisone, currently taking 2000mgs of Pentasa.


Nanners
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   Posted 12/21/2008 10:27 AM (GMT -6)   
Monte while I have never had a fistula, many folks on this board have lived with them. They take a while to heal, but they do heal. Like Gachrons said they just take awhile. I don't believe this is going to be forever. Unfortunately you are going to have to learn patience with this disease. It always seems like its a hurry up and wait situation with this disease all the time. We have to see if this treatment works, or someother treatment will work better. Take this test or that test. I know this is hard on you because it is your child, but I believe in time and with the right treatment your child will have better days. The first years of living with this disease are the hardest, they seem to take the longest to get back on the road to recovery. I can tell you though that alot of folks have had great success with healing their fistulas and Crohns with Remicade. Hopefully, the docs will figure out the right treatment and get her started on it soon, and she is feeling right as rain again. Remember "patience".

Hugs,
Gail *Nanners*
Been living with Crohn's Disease for 33 years.  Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium.  Resections in 2002 and 2005.  Also diagnosed with Fibromyalgia and Osteoarthritis. Currently my Crohns is in remission.


gachrons
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   Posted 12/21/2008 10:39 AM (GMT -6)   
Hi Monte for now they will get the infection cleaned up and are trying to heal it. My thoughts are that they will check it to see if it is clearing up. Then do the SBFT to see if there is still the wee fistula. From there they will make some decisions if they need to on what to do next ,That's the way I see there plan.lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


73monte
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Date Joined Mar 2007
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   Posted 12/21/2008 10:41 AM (GMT -6)   

Thank-You Gail (Nanners).

I appreciate your imput very much. I know your also quite correct. One does have to be patient with this disease, and hopeful. The unknown is tough. I really try not to let my fear show around Holly. In fact I asked her yesterday how she feels about the outlook of this, and she said she trusts the Doctors. On the way home with my 12yr. old son, I said, it's just so unfair, and that we should be out in the malls, getting ready for Christmas like everyone else. He said, "not everyone else Dad, there's alot of people in that Hospital that aren't getting ready for Christmas, and are way worse off than Holly"....Kids these days.   


My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Initially, 9 weeks of Prednisone, currently taking 2000mgs of Pentasa.


Celey
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   Posted 12/22/2008 7:10 PM (GMT -6)   
Heh... I remember, my first year with Crohn's, I was doing pretty bad... pain constantly... and I just put up with it because I didn't want to be in the hospital on Christmas... so, I went into the hospital the day AFTER Christmas.... Ended up staying there for a couple of weeks... Good thing was I got taken very good care of... There wasn't hardly any patients there, so I never had to wait very long for anything...
 
Anyway, I can echo your sentiment about it being unfair... This disease is really unfair... :(
I think I am being picked on by life, sometimes. But's that okay. Life and I are good buddies... I know life doesn't mean no harm. It just is the way it is. I can accept that.


lostsoul36
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Date Joined Dec 2008
Total Posts : 14
   Posted 12/31/2008 1:02 PM (GMT -6)   
Hello all........i am new here. I am currently in a flare-up that has lasted over 4 months. first it was 3 pockets of inflamation in the left side of my colon, then a stricture blockage in my colon, and then the pockets of inflammation turned into multiple abscesses with a fistula. i have had one of those abdominal pump catheters hanging off of me for over a month ...draining the abscesses. they got the first one to drain, and then moved the catheter to the other one...in the meantime the first one filled back up and swelled my abdomen to the size of an orange...very painful.  now the catheter is back in the original spot. i have had antibiotics,prednisone, and 2 remicade IV treatments and the stupid fistula just wont close. the abscesses seem to go down, but as long as the fistula is open i have to keep this bag on. it is very frustrating, but we are continuing with the remicade treatments and antibiotics for awhile and hope this catheter will continue to do its job. i hate this thing.it is inconvenient and gross. if this doesnt get better, they will have to do the surgery.  I have really great doctors, but they are honest about how abscesses/fistulas can be tricky and some people just cant get rid of them or they keep coming back. if anyone has a similar story or any advice...please tell me. i am getting frustrated and i never know which drug is giving me which side effect. the remicade gave me some knee and back pain, but i am hopeful continued treatments will close that fistula. thanks for listening....best wishes and good health to all of you.  

73monte
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   Posted 12/31/2008 2:08 PM (GMT -6)   

First of all, I'm very sorry for what you're going through right now, and I wish you all the luck for recovery. As you can see from my post, my daughter is in the middle of this right now as well. I was hoping to hear from some that have had success with treatment of this sort of thing. This doesn't sound too promising. How do the Dr.'s feel about the liklihood of the fistula closing? Did each abscess have a fistula, or was there only one?

Once again, good luck with this, and Thank-You for sharing you experience. 


My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Initially, 9 weeks of Prednisone, currently taking 2000mgs of Pentasa.


gachrons
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   Posted 12/31/2008 10:37 PM (GMT -6)   
Hi Lostsoul36 I know you are frustrated right now and rightfully so it is hard to deal with, I guess not quite understanding it was a bit hard for me. When I had my abcess they operated and that healed. Then small fistula apeared after the abcess surgery in the incision area.It took at least 3 or 4 treatments of Remicade to heal it up .I did not have the abcess when I started Remicade but I also was on alot of B-12 which I felt really helped me heal. Now over a year later when I had my resection they mentioned that, that fistula had remained healed but I did have that removed when I had my resection and my other one to small to large bowel that was large. Hang in there things get better beleave me. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


lostsoul36
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Date Joined Dec 2008
Total Posts : 14
   Posted 1/1/2009 1:51 PM (GMT -6)   

Hello, to 73monte, i believe they said it was just one fistula. i had one very large abscess bulging out of my abdomen that had the fistula attached to it. the abscess drained in 3 weeks and looked good, so they put it in the smaller abscess, which is a little lower and then the big one came back with a vengeance.

i think because the fistula wasnt healed all the way , it filled the abscess back up...but that was a chance they had to take i guess. not everyone gets multiple abscesses. he even suggested putting two catheters on me....and i replyed something not very nice.LOL

i just have to keep this catheter on, and do more remicade...i only did two so far and others have had success with the remicade closing off fistulas. since this was my first real full blown flare-up, i probably waited to long to go in(also because i have no insurance)......i didnt know how bad it really was. i guess we all just hope and pray for each other....and thanks for sharing your stories.

gachrons- i think i will probably have to have that surgery soon if the next remicade treatment doesnt work. they are trying to avoid it because they know i already have a mountain of bills i cant pay, but i may have no choice. the antibiotics are giving me bad side effects, the prednisone sucks and as i said, i only had two remicade treatments so far....i just have to be patient. i just hate this stupid catheter. i want to burn it. it has been over a month and i want to go out, and i want to take a real shower and be able to sleep in whatever position i want.  anyhow, enough whining. thanks for your reply and i hope all goes well for you.  oh, by the way, what kind of B-12 do you take? do you mean pills or injections? 

   


Joie1
Regular Member


Date Joined Oct 2008
Total Posts : 350
   Posted 1/1/2009 1:54 PM (GMT -6)   
Well...had a bunch at once. They did the wait game for about a month in the hospital where they kept me off food and monitored my situation really well. Then they went in and did surgery 'cause of how many there were. Surgery wasn't so awful. It hurts like a bleepity bleeper but its survivable and I was better afterward.
27/f/CD. 4 CD related surgeries: 2 resections, 2 JP drains, 3 NG tubes, many absesses (including the one my most recent surgery scraped off my ovary) and fistulas.
Currently trying to figure out hip and knee joint pain.
Have lost in these surgeries: appendix, 8 in. intestine, R fallopian tube, gallbladder, 10 in. intestine
Crohns Dx'd: February 2008.
Pentasa (and much mental screaming)

Trying to hang in there until January so I'll have some insurance and can visit a rheumy, neuro, GI, primary, pain control, and possibly a shrink so I could stop crying and living in my own lil pity party. :-P


lostsoul36
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Date Joined Dec 2008
Total Posts : 14
   Posted 1/1/2009 2:02 PM (GMT -6)   
Hello again. i just wanted to say to 73monte that i didnt mean to freak you out or anything. please
dont let my frustration make you think there is no hope. it can be scary and i just have been under alot of pressure, but the patience thing is important. i have heard great things about remicade, and i am now just learning that these abscesses/fistulas are very tricky, but they do get better in time. i need to be more positive....and i wish your daughter a very fast recovery. i will let you all know how my next treatment goes and if anything is working to get this catheter off of me. i wish we could all meet because i have no support group and could really use one. i am glad we have this outlet, but it would be nice to meet face to face with people. i live in western wisconsin, just over the border from minnesota....small town, so we dont have alot of support groups. i have been trying to talk to people at my clinic, but noone seems to know how i can really start one.. i will keep trying. in the meantime, it is comforting to have others sharing their struggles and fears...thanks and hang in there.

lostsoul36
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Date Joined Dec 2008
Total Posts : 14
   Posted 1/1/2009 2:11 PM (GMT -6)   
Hello Joie1, you had multiple abscesses to? is that common, or do most people only get one i wonder. it sounds like you have had alot of trouble. how long havee you had crohns? i am scared to have the surgery. can you tell me more about it. i to have to stop with the pity party, but its hard. i just started seeing a therapist, but its a long road. i am tired of seeming like a whiner all the time, but we all need to vent our frustrations to someone. i just cant seem to find anyone around here that understands. my mother listens, but i think she really is worried about me and cant understand. mothers always want to cure and comfort, and it hurts her that she cant. sometimes we have to have a pity party, i just wish someone would come to the party once in a while. it can get lonely and frustrating, but that it why i came to this site. we all need support and people who wont mind if we vent a little. anyhow, if you can, please tell me more about your situation. thanks.

73monte
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Date Joined Mar 2007
Total Posts : 1112
   Posted 1/1/2009 9:57 PM (GMT -6)   

Hi Lostsoul36

Thanks very much for posting. You didn't freak me out, but I appreciate the concern over that. I have been looking for some imput from people like yourself that have gone through similar experiences with this and what the success rate is. I'm very glad you were able to share yours. You've come to the right place for support. You'll find many compassionate individuals here. We all sometimes lose our perspective and rant a little, but usually some of the veteran members here will give you a good dose of common sense to help you get your thinking straight again. Good Luck.

Tom.


My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Initially, 9 weeks of Prednisone, currently taking 2000mgs of Pentasa.


chroniemomx2
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   Posted 1/2/2009 10:07 AM (GMT -6)   
lostsoul36....the only way to get rid of the abscess completely is to have it surgically drained. I have had the ct guided drainage done and it does not work, and cannot work. You need to have a surgeon go in and drain the abscess, clean the cavity, and then leave it open to heal from the inside out. This is the way that I have gotten rid of my abscesses.

73monte
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Date Joined Mar 2007
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   Posted 1/2/2009 11:33 AM (GMT -6)   
.<<<<< I have had the ct guided drainage done and it does not work, and cannot work>>>>>
 
Just wondering if you could expand on this a little, particularly, why this cannot work. It obviously didn't work for you. Does it make a difference in the type of abscess, location or not? I quite worried right now about a recurrence and being back to square one. Don't really want a repeat of what we just went through. 
My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Initially, 9 weeks of Prednisone, currently taking 2000mgs of Pentasa.


lostsoul36
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Date Joined Dec 2008
Total Posts : 14
   Posted 1/2/2009 12:01 PM (GMT -6)   
I would like to know to why this doesnt work either. you are talking about the drainage catheter right? I have had it in for over a month and i am starting to believe it is a waste of time. my doctor is trying to avoid the surgery, but i dont want to waste time with this catheter if they dont work. i will be getting my 3rd remicade treatment on jan. 12th, and we are hoping that will close the fistula so that the abscesses can heal. yes, please expand on your experience with this. i am getting frustrated and want this stupid bag off of me. doc says even with the surgery, the abscesses sometimes come back...not sure what my options are at this point.
 
mad  

chroniemomx2
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   Posted 1/2/2009 1:21 PM (GMT -6)   
sure...here is my experience with that in detail...I had a rectal abscess the size of my surgeon's fist. He stood at the end of my hospital bed and told me that he wouldn't operate that this is how they drain them now (by ct guided cath.). So, we went ahead with it. I had the ifrst one in a week. They did another ct and the abscess was "gone". A few weeks later it was back. So we did it again and this time I went home with it and it was left in for a month. Another ct...yep it's gone, so they pulled the drain. For the next 8 months, I would get periodic drainage out of where the drain went in, and quite a bit of drainage when it would happen. I questioned everyone on this, and no one could give me an answer. Then I woke up one morning and was so sick and in abscess pain again. It was a Sun, so I went to the er. My surgeon wasn't on call, so I was assigned a different one (which was trained at the Cleveland Clinic), and that was a total blessing in disguise. He admitted me to the hopsital, and explained that when they drain an abscess with the ct cath there is absolutely no way to get all the infection out. Once you pull the drain, they there is still infection in there...all it takes is one little bacteria to start the process all over again. He explained to me that when he takes me into the operating room, he locates the abscess, drains it, cleans out the abscess cavity, injects a dye in it, and then looks around on the inside of the rectum to see if he can see a connection to the inside that would indicate a fistula. If he does see a fistula at that time, he puts in a seton, if not, he leaves the abscess open, so it heals from the inside out.

Instead of when you have the ct cath in, it gets pulled and immediately seals over, sealing in any infection.

I have never had the same abscess come back when they have been surgically drained.

Does this make sense? I hope that helps.

73monte
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Date Joined Mar 2007
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   Posted 1/2/2009 1:50 PM (GMT -6)   
It does help, although a bit different in location. My daughters is attatched to the small intestine, and not draining to the outside. How was the surgery done exactly? Was a scope used?  The issue does seem to be that the empty abscess can just keep refilling. That is a big concern. 
My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Initially, 9 weeks of Prednisone, currently taking 2000mgs of Pentasa.


chroniemomx2
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Date Joined Apr 2005
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   Posted 1/2/2009 2:08 PM (GMT -6)   
Yes, I understand that the location is different....but I still believe that she needs to have surgery....that is the whole issue with the ct cath...there is no possible way to get all of the infeciton out, so it keeps refilling once the drain is pulled. It is very simple surgery. It is outpatient....I'm in and home in a few hours. The first couple of times they used general anesthetic but I don't like the breathing tube so now they use a drug combo like for a scope...per my request. He knows the general location by me telling him where the pain is. He inserts a needle to locate it, and then makes the insicion....

To clarify, my abscesses were all very deep, and never could be seen on the outside. The one that drained periodically was because of the ct cath....the surgeon to fix that one, had to clean up quite a big area. Sometimes he has packed the abscess and other times, I have had a mushroom drain (nothing at all like the ct cath) left in for 10 days after, then he removes that in his office. It depends on the location and how deep the abscess is.

To answer the scope ?, he uses an anoscope during surgery to look around on the ised to see if a fistula is connected to the abscess.

I didn't have to prep for this....just npo after midnight.

Has she had a surgeon consult? If not, that would be my next step. Whenever I get an abscess, I always call my surgeon. My gi usually only finds out from his notes. She is totally fine with this as there is nothing she can do for me....she is the one who told me just to call the surgeon. Also, make sure it is a colorectal surgeon. If you don't know of any, I would ask the nurses in the hospital who they recommend. They work with these guys and see the outcome of what they do.

gachrons
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Date Joined Mar 2007
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   Posted 1/2/2009 4:09 PM (GMT -6)   
Hi Chroniemomx2 I beleave Tom is talking about a abdominal abscess unless I'am mistaken here. It is a big operation if you are talking abdominal abscess surgery or at least mine was .lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


sparkles254
Regular Member


Date Joined Jan 2008
Total Posts : 28
   Posted 1/2/2009 5:34 PM (GMT -6)   
I have perianal crohns so I have had quite a few fistuals that made abcesses on the inside of my buttocks. The ONLY thing that healed them up was remicade! For about a year the remicade was the best thing ever until I started getting arthritus from it. EVERY joint in my body HURT and swelled to the point that I could BARELY walk. Now I am on humira and the abcesses are coming back again.

chroniemomx2
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Date Joined Apr 2005
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   Posted 1/2/2009 6:58 PM (GMT -6)   
gacrohns...yes, I understand that it is an abdominal abscess. lostsoul36 asked me to expand on my experience and so I did.

73monte
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Date Joined Mar 2007
Total Posts : 1112
   Posted 1/2/2009 7:41 PM (GMT -6)   
Yes, in our case it is in the lower abdomen. This is giving me a whole new spin on this. It's understandable and all, but very confusing in the sense that our GI hasn't touched on the liklihood or possibility of surgery. She seems quite confident in the treatment and healing of it. Is she just hoping and not wanting to alarm us right now?  I think that another reason that she wants Holly on Imuran, is for the additional healing benefit of the fistula. And on we go.
My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Initially, 9 weeks of Prednisone, currently taking 2000mgs of Pentasa.

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