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05-08-2016, 07:18 AM   #1501
Starnett
 
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Thanks so much for the replies!

I've not been diagnosed with either UC or Crohns, just waiting for my hospital appointment to see if I can finally get some answers. I've been having digestive issues which have gotten progressively worse over the last 18 years. As they have diagnosed my with IBS then everything that ever happens now is always related to that, according to the doctors. This is despite them never sending me for any tests. Only test I've had was sigmoidoscopy which was clear at the time (I had this procedure before the development of the abscess).

I might call the hospital appointment line and see if they can get me in sooner, I will try that this week. Also, thanks for the info about Professor Carlson. I will definitely look into that.

Andy
05-08-2016, 10:39 PM   #1502
mellie
 
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Hearing 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!!!
Hi, everyone! I wanted to share a bit of hope and guidance. I have been diagnosed with Crohns (although I have just recently started feeling the typical Crohns symptoms and had to date only dealt with anal abscesses and the weird nose sores, mouth sores and eye issues for the most part). My anal abscesses started in 2008 and I truly thought I would have to live with them for the rest of my life. They were miserable. In February of this year, I had a blood clot in my leg (I may have lupus as this will be my third blood clot) and during my hospital stay, I was introduced to an Infectious Disease Specialist. She actually swabbed the abscesses during my stay and found one particular strain of bacteria within the abscesses and prescribed an antibiotic specifically for that strain of bacteria. Since taking that antibiotic, the abscesses are completely cleared up and no longer weeping like they were for the last 8 years. The colorectal surgeons (nor my gastroenterologist) ever thought to do this and it is certainly worth exploring if you haven't already. It is different than simply taking cipro or flagyl. I've been to alternative doctors and explored every route I could think to take. I didn't want to take an antibiotic because I didn't want to kill my good gut flora but this totally did the trick! I've had the abscesses drained a million times and had surgery but they never placed setons because they couldn't find openings (the surgeons did think they were fistula). I do continue to take Humira. If you can, please seek an Infectious Disease Specialist. I never thought to do it and wouldn't have but she showed up and took control and I'm forever grateful! Best wishes to you all!
05-09-2016, 07:45 AM   #1503
MeLee38
 
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She actually swabbed the abscesses during my stay and found one particular strain of bacteria within the abscesses and prescribed an antibiotic specifically for that strain of bacteria. Since taking that antibiotic, the abscesses are completely cleared up and no longer weeping like they were for the last 8 years. The colorectal surgeons (nor my gastroenterologist) ever thought to do this and it is certainly worth exploring if you haven't already. It is different than simply taking cipro or flagyl.
Hi Mellie, I am curious, my abscesses have been internal in my rectum (they actually cut through my sphincter muscle to remove one of them). How were they able to swab your abscesses, were they external?
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Surgeries/History:
- Bartholin Cysts, Acid Reflux, Hemoirrhoids&Bowel issues, skin rashes, fatigue, joint pain
- Anal Abscess Removed (cut through sphincter muscle) Dec 2014
- Formation of Recto-Vaginal Fistula Jan2015
- Hemorroidectomy & Advanced Flap Repair Dec 2015
- Removal of peri-anal cyst Sept 2016
- MRI July 2017
- Colonoscopy October 2017
- Peri-anal cyst #2 removed Dec 2017
05-13-2016, 06:13 PM   #1504
Lizette
 
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Hi mellie,
My son is Being de akin with anal abscesses as well for the past 10 years, and even though we had the GI do a colonoscopy and ask to swap the abscesses they have not done it.
Did they tell you what kind of bacteria they discover you had and what antibiotics did you take.
After reading your post I'm going to look for a infectious disease specialist.
Lizette
05-13-2016, 07:10 PM   #1505
mish2575
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Abby, the shots hurt way less in my stomach. ive heard that from others as well.


Everyone,
I recently read about a newer procedure PERFACT. Looks promising.


http://www.ncbi.nlm.nih.gov/pmc/arti.../#!po=0.537634
05-13-2016, 09:31 PM   #1506
mellie
 
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My apologies for not responding sooner! Normally I get an email if there are any new messages on this thread and I might have missed them when they came in! The surgeon thought I had fistula that closed up but I had two abscesses that were constantly draining near my anus. Honestly, they hurt worse than the blood clot that ran from my groin to my ankle when I was in the hospital and that is what prompted my request to call in the surgeon to drain them. So, if yours are internal and you can get into the surgeon, see if you can have that surgeon partner with an infectious disease specialist to swab the internal abscess. The infectious disease specialist ordered the swabbing and the surgeon swabbed (to my knowledge, I was thankfully out like a light). THOUGH, I will say that I was on a hospice floor (didn't know it at the time, thankfully) and didn't have the highest quality nursing staff. So, when the nurse came in with 10 long cotton swabs, I was souped up on morphine and went willingly into the bathroom and swabbed myself 10 times. By the look on the Infectious Disease Doctor's face, I know that nurse got an earful. HA!!!! The thing is, I never thought to seek out an infectious disease specialist and I don't think most of us have. They have a different skill set than our GI's or Surgeons and are definitely worth speaking with and getting different answers from!
05-14-2016, 11:22 AM   #1507
Starnett
 
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Just been to the docs after a pretty bad week with my abscess that isn't healing. I've now been referred to the hospital to see a surgeon for review to see what to do next. I have to phone and choose the hospital to go to. The thing is, I'm still awaiting my GI appointment for further investigation into my bleeding, pain, stomach issues etc so I am wondering if I need to go to the same hospital and department rather than being under different GI specialists at two different hospitals? I asked to go to the regional specialist to my GI issues so should I ask for this regarding the abscess or would I see a different area of specialism for a perianal abscess? Based in uk.

Thanks
05-14-2016, 12:01 PM   #1508
mellie
 
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Just been to the docs after a pretty bad week with my abscess that isn't healing. I've now been referred to the hospital to see a surgeon for review to see what to do next. I have to phone and choose the hospital to go to. The thing is, I'm still awaiting my GI appointment for further investigation into my bleeding, pain, stomach issues etc so I am wondering if I need to go to the same hospital and department rather than being under different GI specialists at two different hospitals? I asked to go to the regional specialist to my GI issues so should I ask for this regarding the abscess or would I see a different area of specialism for a perianal abscess? Based in uk.

Thanks
Starnett
I can only speak from my own experience which can be totally different from yours. However, I do continue to work with my gastroenterologist and my general practitioner. Bringing in an infectious disease specialist was not something I asked for but it was wonderful and something that helped tremendously. Hindsight being 2020 I would've asked for an infectious disease specialist much sooner. Knowing where you are at this point in the game having the opportunity to choose your hospital. I would choose the hospital and speak with the G.I. and the surgeon and ask that they bring in an infectious disease specialist to consult with so that the surgeon can swab the abscesses. Best wishes to you I know you must be in so much pain and discomfort! It is certainly worth seeking additional help.
05-14-2016, 12:33 PM   #1509
Starnett
 
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Thanks for the quick reply. I will look at being referred to the same hospital so they can coordinate their efforts more easily. I will mention what you have said about the abscess being swabbed. I'm surprised that my GP has not considered this when offering antibiotics. I suppose we have specialists for a reason though 😉
05-14-2016, 02:23 PM   #1510
mellie
 
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Thanks for the quick reply. I will look at being referred to the same hospital so they can coordinate their efforts more easily. I will mention what you have said about the abscess being swabbed. I'm surprised that my GP has not considered this when offering antibiotics. I suppose we have specialists for a reason though 😉
Starnett, eight years with these blasted things and not one GP or gastroenterologist or colorectal surgeon or alternative doctor or anyone for that matter mentioned swabbing them to determine what type of bacteria was there so they could prescribe the correct antibiotic. It's perplexing to say the least. So, it really excites me to be able to give you this information in the hopes that it can help you and stave off some of the suffering that I've gone through. I really and truly hope it helps. Please please keep me updated!
05-15-2016, 07:19 AM   #1511
FAYEZ ALMASRI
 
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I was suffered from anal fissures in Feb 2014. then I had a surgery to treat it. but until Jun 2014 the wounds wasn't healed. then the doctor asked me to do colonscopy. the results was that i have crohn's disease. then after a courses of steroid doses all my wounds became better.

Nowadays, there is a huge pain when I go for toilet. I went to hospital then I conducted MRI for my anal. the results are:

" Features are suggestive of inter sphincteric grade 1 fistula arising from 1 o clock position on left side of anal canal with surrounding inflammatory changes. And extending inferiomedially between the internal and external sphincters into the subcutaneous tissues of the left buttock. No breach of the external anal sphincter. No abscess seen. "

I don't understand if this one is complicated or normal ?

I'm very afraid from having surgery. not from the surgery itself. but from the side effect especially if the operation affect my ability to control " fecal incontinence". it's rare ? or it's common ?
05-15-2016, 08:51 AM   #1512
Starnett
 
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Fayez, I don't have any advice about the surgery, other than to say I really sympathise with you regarding the surgery. I don't really like the sound of surgery due to the risk of incontinence (should a fistula arise from the abscess). I wonder if this as already happened, not sure, just they way it feels right now, though I am no expert and will let the doctors decide.

From my understanding, they will not do any operation that can cause incontenance unless there is no other option. I have heard other say that when a fistula crossed the spicnter muscles and is complex, surgeons will often resort to setons instead, with the aim of encouraging healing this way, rather that cut the muscle and risk incontenance. I would speak to your doctor or surgeon about it all in depth before agreeing to any surgery so you feel reassured. Hope this helps.

Thanks Mellie, I will certainly mention this to any surgeon I come across when dealing with the abscess surgically.
05-16-2016, 12:11 PM   #1513
Starnett
 
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Got my appointment today to see a colorectal surgeon. Was quite shocked how quick they sorted it out. Going to see him a week tomorrow at a private hospital. Perhaps now we can get to the bottom of things regarding this abscess (excuse the pun haha).

Andy
05-16-2016, 02:39 PM   #1514
ronroush7
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Got my appointment today to see a colorectal surgeon. Was quite shocked how quick they sorted it out. Going to see him a week tomorrow at a private hospital. Perhaps now we can get to the bottom of things regarding this abscess (excuse the pun haha).

Andy
Hoping the best, Andy.

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Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
05-16-2016, 03:58 PM   #1515
Starnett
 
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Me too, thanks for the support. In a bit of pain tonight. It's so frustrating :/
05-16-2016, 06:11 PM   #1516
christina57
I understand the frustration for sure.I have two setons and I have been uncomfortable with them for a few weeks now don't know whats going on.I had the sugery for them on April 13th sighs!!!
05-17-2016, 02:25 PM   #1517
bumprump
 
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I came on here hoping for answers concerning my fistula and seton and I realize that I am not alone going through this But I read your stories and unfortunately it concerns me even further. Middle of June I will be going through my second seton surgery and then 6 weeks later my third. So many of you seem to be struggling with this issue for years. I just want this to be over and to not have this reaccuring problem... kinda scared...
05-17-2016, 02:56 PM   #1518
ronroush7
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I came on here hoping for answers concerning my fistula and seton and I realize that I am not alone going through this But I read your stories and unfortunately it concerns me even further. Middle of June I will be going through my second seton surgery and then 6 weeks later my third. So many of you seem to be struggling with this issue for years. I just want this to be over and to not have this reaccuring problem... kinda scared...
Sending support.

05-23-2016, 06:59 PM   #1519
Ann Morgan
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Got my appointment today to see a colorectal surgeon. Was quite shocked how quick they sorted it out. Going to see him a week tomorrow at a private hospital. Perhaps now we can get to the bottom of things regarding this abscess (excuse the pun haha).

Andy
How did your appointment go ? You should not have to suffer any longer.

My history : Anal Fistulectomy in 1992. Rectal Abscess surgery in 2002 and 2009. No fistulas or abscesses at this time. I have had diarrhea since 1997. I was diagnosed with UC in 2006. I had C-diff in 2015. Thanks for listening. Everyone have a good week.
05-23-2016, 08:56 PM   #1520
earthshine
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Hi Ann
Low fodmap diet, probiotics, enzymes and l glutamine have helped me with diarrhea
05-23-2016, 09:06 PM   #1521
christina57
I heard a anal fistulectomy has a chance of you being incontinent if they cut in to the sphinxter muscle.My surgeon Is talking about a biolift or a flap advancement.I have two setons in place now and this will be my fourth surgery for fistulars.
05-29-2016, 08:05 AM   #1522
Starnett
 
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Thanks for asking Ann. My consultant has confirmed I have a fistula. He could see and feel the external opening but could not locate the internal opening on examination. He has requested an MRI to see what course of action to take next, though he did say some form or surgery will be needed. I'm a bit fed up with it to be honest but there are worse things happening in the world I guess.

I'm trying to stay positive and focus on the good things in life. I've just been promoted at work (I'm a teaching assistant in a special school). I'm also working towards becoming a teacher in the next few years, which the school is supporting me through so I'm very lucky in other ways!

I really do send my support to everyone else that is going through this and other GI conditions. Whilst I haven't been diagnosed with Crohns I have found everyone here so supportive of my GI problems and everyone has been so welcoming. It really makes me realise I'm not alone so thanks to everyone for your support. I'm always here for you too

Andy
05-29-2016, 09:40 AM   #1523
christina57
Hi Andy,
I so understand what your going through I am so sorry you have a fistular.I have a complex fistular and need to once again have surgery I have 2 setons now.Keep in touch.
05-30-2016, 03:23 AM   #1524
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Hi everyone, i was diagnosed with Crohn's when i was 20. Except for one relapse have been off meds (cleared by dr) for 10 yrs. Used to take all the meds including azathioprine, prednisone. In January i opted for a body check since its been quite some years. My doctor had me take a colonoscopy where they found fistulars. Now its been confirmed through mri scan that i have 3 fistulars connected to my ovary and small bowel.

Doctors have not been very helpful so far. I have been in and out of hospital since January. They only told me that the inflammation has gone up besides havng 3 fistulas but i don't have any pain whatsoever.

Now they prescribed me with 2 months of medical nutrition / liquids and budenofalk.

I am really scared about what is coming next. Is surgery inevitable and would they remove my ovary is what is on my mind every day. I am only 34 yrs old so am scared my life as it is over and it does not help that i am not able to eat which makes me easily emotional and agitated.

Came here to find support. Its great to have all of you here.

Veronique from Netherlands
05-30-2016, 03:31 AM   #1525
ronroush7
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I am not sure of the answer but I am sending my support. Keep us updated.

05-31-2016, 08:18 AM   #1526
Starnett
 
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Sorry to hear of your problems. Again, I'm not sure what the eventual outcome will be. All I can say is keep communication as open as possible with your doctors and make sure you have all the facts and choices before going ahead with any procedures or surgeries.

My consultant, who recently diagnosed my fistula, told me that he will give me all the information about my condition and them make his recommendations but it is my decision how to proceed. Knowing this at least makes you feel that you have some control.

Sending my support to you and we are hear if you need to talk.

Andy
06-01-2016, 12:39 PM   #1527
mish2575
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Hi mellie,
My son is Being de akin with anal abscesses as well for the past 10 years, and even though we had the GI do a colonoscopy and ask to swap the abscesses they have not done it.
Did they tell you what kind of bacteria they discover you had and what antibiotics did you take.
After reading your post I'm going to look for a infectious disease specialist.
Lizette
My doctor also refused "that is just not done". I wasn't insistent enough but now i will insist upon my next visit. I will also seek out an infectious disease doctor. Thanks guys.
06-02-2016, 09:44 PM   #1528
dave13
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Hi everyone, i was diagnosed with Crohn's when i was 20. Except for one relapse have been off meds (cleared by dr) for 10 yrs. Used to take all the meds including azathioprine, prednisone. In January i opted for a body check since its been quite some years. My doctor had me take a colonoscopy where they found fistulars. Now its been confirmed through mri scan that i have 3 fistulars connected to my ovary and small bowel.

Doctors have not been very helpful so far. I have been in and out of hospital since January. They only told me that the inflammation has gone up besides havng 3 fistulas but i don't have any pain whatsoever.

Now they prescribed me with 2 months of medical nutrition / liquids and budenofalk.

I am really scared about what is coming next. Is surgery inevitable and would they remove my ovary is what is on my mind every day. I am only 34 yrs old so am scared my life as it is over and it does not help that i am not able to eat which makes me easily emotional and agitated.

Came here to find support. Its great to have all of you here.

Veronique from Netherlands
In my opinion,you need to have the fistulas attended to.The potential damage they can do the longer they are not dealt with has to be considered.I agree with Starnett,communication is important.If you have three confirmed fistulas,your gastroenterologist and you need to get together and form a plan.Our health care systems are so different with forum members,depending on where we live.I had a fistulotomy/draining seton placement and I share your concern about surgery.We are different in how we are affected but I stress fistulas need to be attended to so they do not progress.As far as meds for the fistulas I have infliximab/remicade infusions.In my case,surgery really helped.My fistulas are around my rectum,so it is a different situation than you.I send you support and keep us posted.
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06-02-2016, 09:47 PM   #1529
ronroush7
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Yes. I agree. Get the fistulas attended to.

06-08-2016, 02:15 PM   #1530
DougUte
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I also think fistulas need to be attended to. 3 confirmed fistulas is a lot at one time and they can cause major damage if not attended to.
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Increased to weekly injections on November 1st, 2016
Due to the insurance company, Humira ended on January 31, 2017.
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