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09-18-2016, 07:51 PM   #1621
GABoy
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Hi Wholesome Joe. I'm sorry your going through this. Do the abscesses seem to be getting larger? Are they warm to the touch? I think every medical professional would tell you that you must have the abscesses drained. Many times, they will do it in the ER under a local. Hopefully there is a CRS on call. You can apply for charity care, or something similar in your state.

The risk you run is it getting worse. I let mine sit for a while and did just about the same treatment. It didn't work and I had a large abscess that had to be drained and I was in the doctors office everyday for weeks having the packing changed. Better to deal with it early than too late. Good luck to you.


__________________
Diagnosed with perianal Crohn's Disease: 12/2013

Surgeries:
Abscess Drainage 10/2013
Seton Placement 11/2013
Abscess Drainage + Seton Placement 4/22/2015
Abscess Drainage 10/28/2015
Seton placement 2/11/2016
Abscess Drainage 2/26/2016
Mucosal Advancement Flap 8/12/2016


Prior Medications:
Cipro, Flagyl, Prednisone, Humira, Entyvio

Current Medications:
Remicaid 6MP and Allopurinol
09-18-2016, 07:53 PM   #1622
ronroush7
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Hi Wholesome Joe. I'm sorry your going through this. Do the abscesses seem to be getting larger? Are they warm to the touch? I think every medical professional would tell you that you must have the abscesses drained. Many times, they will do it in the ER under a local. Hopefully there is a CRS on call. You can apply for charity care, or something similar in your state.

The risk you run is it getting worse. I let mine sit for a while and did just about the same treatment. It didn't work and I had a large abscess that had to be drained and I was in the doctors office everyday for weeks having the packing changed. Better to deal with it early than too late. Good luck to you.
I agree.

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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.
09-19-2016, 10:02 PM   #1623
dave13
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wholesomejoe,you need to see a colorectal specialist. Abscesses can form into fistulas. You need to deal with things before they get worse,in my opinion. I can relate to the $$ problem,like so many of us can. The danger is the damage being done to your body.

I have five fistula that went undiagnosed for years. I had a fistulotomy and seton placement on three of them. Recovering from the surgery was slow but helped me. The surgery was two years ago. I did start remicade after surgery as well.

Two years ago I was told I could lose my rectum and today things are looking much better. I still have setons but the fistulas,though not healed,are much improved. They barely drain now.

FYI
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09-20-2016, 12:19 PM   #1624
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I have been dealing with perianal crohn's for 6 years now and have had multiple surgeries to drain abscesses, fistula surgery (no seton placed as the C/R Surgeon couldn't find the internal opening to the fistula) and massive amounts of pain. I was in denial about having Crohn's as I don't have daily stomach issues per say. However, I came to realize that my Crohn's presented in weird ways with abscesses turning to fistula, eye infections, sores in my mouth and nose and although not a symptom of Crohn's, I have had 2 DVT's and 1 DVT that became a PE (discovered that Crohn's patients are twice as likely as a 'normal' individual of having clotting issues). Earlier this year I relented and started taking Humira. This past week, I was just thinking of how well the Humira was working with the abscesses. I can feel the abscesses trying to reappear as I get close to my next dose, but the Humira will kick in and calm them back down. Well, this past Sunday the cycle began again...started to feel pain in that area but it wasn't a hard lump that I normally get. Instead, it came from a different area and is from what I can determine, a thrombosed Hemmorhoid. WHAT PAIN!! Oh my goodness. I actually broke down crying to my mom (I am a 44 year old adult!) as I tried to describe how much I hurt. My doctor can't see me until tomorrow and I absolutely had no idea how I was going to wait it out. Well, my husband has been using DMSO to treat his arthritis for years now. I swore I wouldn't use it because, honestly, the smell is horrible. He researched it extensively and swears by the results. This morning was so bad that I would have done anything to alleviate the pain. So, at his suggestion, I applied the DMSO to the area after showering. The results were not immediate, but pretty close. It is now 1 o'clock in the afternoon and the pain has been SIGNIFICANTLY reduced. This pain I can deal with (don't we have different levels now that we're dealing with these issues???). I forgot about the DMSO and called my husband to say, "I don't know what happened but I feel so much better." He reminded me of the DMSO. I still have more personal research to do about it and I will say that the FDA has not approved it for use through a prescription other than to treat Bladder conditions. However, you can get it through the health food stores and although I resisted for a very long time in using this, it was as close to a miracle as I have come to in dealing with this. Please investigate for yourself and seek guidance from your doctor! I am always seeking other's assistance and what has worked for them so I wanted to share my experience with all of you. Best wishes!
09-20-2016, 12:34 PM   #1625
ronroush7
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I have been dealing with perianal crohn's for 6 years now and have had multiple surgeries to drain abscesses, fistula surgery (no seton placed as the C/R Surgeon couldn't find the internal opening to the fistula) and massive amounts of pain. I was in denial about having Crohn's as I don't have daily stomach issues per say. However, I came to realize that my Crohn's presented in weird ways with abscesses turning to fistula, eye infections, sores in my mouth and nose and although not a symptom of Crohn's, I have had 2 DVT's and 1 DVT that became a PE (discovered that Crohn's patients are twice as likely as a 'normal' individual of having clotting issues). Earlier this year I relented and started taking Humira. This past week, I was just thinking of how well the Humira was working with the abscesses. I can feel the abscesses trying to reappear as I get close to my next dose, but the Humira will kick in and calm them back down. Well, this past Sunday the cycle began again...started to feel pain in that area but it wasn't a hard lump that I normally get. Instead, it came from a different area and is from what I can determine, a thrombosed Hemmorhoid. WHAT PAIN!! Oh my goodness. I actually broke down crying to my mom (I am a 44 year old adult!) as I tried to describe how much I hurt. My doctor can't see me until tomorrow and I absolutely had no idea how I was going to wait it out. Well, my husband has been using DMSO to treat his arthritis for years now. I swore I wouldn't use it because, honestly, the smell is horrible. He researched it extensively and swears by the results. This morning was so bad that I would have done anything to alleviate the pain. So, at his suggestion, I applied the DMSO to the area after showering. The results were not immediate, but pretty close. It is now 1 o'clock in the afternoon and the pain has been SIGNIFICANTLY reduced. This pain I can deal with (don't we have different levels now that we're dealing with these issues???). I forgot about the DMSO and called my husband to say, "I don't know what happened but I feel so much better." He reminded me of the DMSO. I still have more personal research to do about it and I will say that the FDA has not approved it for use through a prescription other than to treat Bladder conditions. However, you can get it through the health food stores and although I resisted for a very long time in using this, it was as close to a miracle as I have come to in dealing with this. Please investigate for yourself and seek guidance from your doctor! I am always seeking other's assistance and what has worked for them so I wanted to share my experience with all of you. Best wishes!
I am glad it helped you.
09-20-2016, 01:15 PM   #1626
mellie
 
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As supportive as this thread is it is also full of horror. There seem to be absolutely no good results for anyone. Everyone, including myself, seem to take one step forward and two steps back.

This has got to be one of the most dangerous extra-intestinal manifestations of the disease. I've had Crohns for 17 years. Fistulas are definitely THE thing that affects my quality of life most.
Mish, I absolutely share your feelings. It seems that as soon as I feel confident that I have resolution to pain and suffering and I won't get another abscess, WHAMMO! It's a horribly vicious cycle and it can knock us to our knees at times. But, it is like anything...when you go through really tough times that you don't feel you can get through and you do??? It's the greatest feeling in the world to feel happiness again or, in our case, to be without unbearable pain.

Who would've thought our lives would revolve around our rear ends??
09-25-2016, 12:42 PM   #1627
GABoy
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Some cautious good news. I saw the CRS yesterday. My fistula is closed post mucosal advancement flap surgery.

However, I did tell him that I had some increased pain with an area of swelling. After a couple of days, I had a large amount of blood and the pain subsided. Of course, that sounds like an abscess that burst.

He looked and said there was no abscess at this point in time. He discharged me with specific instructions that if I get the pain and swelling again, I am to come in immediately. So again... cautious optimism is all I can have.
09-26-2016, 08:38 PM   #1628
Fifi1983
 
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Hello!! I am just wondering if anyone has had their fissures injected with steriods or anal tags removed? I just had the surgery this morning and would like to know what I'm in for.
09-26-2016, 08:46 PM   #1629
Fifi1983
 
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I'm queen of fissures count me in.
Hey Hannah, have you had any surgeries on your fissures?
10-31-2016, 05:19 AM   #1630
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Been a while since I was on and did an update. Had exploratory surgery in September, where they found and removed a large peri-anal cyst. Recovery for that seemed to go well, not nearly as much pain as when I had the advanced flap repair or the hemorrhoidectomy. However, it seems that now the flap repair has let go or re-opened as I am once again passing stool through my vagina, YUCK!! So another call into my surgeon today, was hoping the cyst removal would be the end of this for awhile...but alas, there is no rest for the weary, sigh...
__________________
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
- Colonoscopy May2016
- Removal of peri-anal cyst Sept 2016
- MRI July 2017
- Anal abscess Aug 2017
10-31-2016, 06:14 AM   #1631
ronroush7
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Been a while since I was on and did an update. Had exploratory surgery in September, where they found and removed a large peri-anal cyst. Recovery for that seemed to go well, not nearly as much pain as when I had the advanced flap repair or the hemorrhoidectomy. However, it seems that now the flap repair has let go or re-opened as I am once again passing stool through my vagina, YUCK!! So another call into my surgeon today, was hoping the cyst removal would be the end of this for awhile...but alas, there is no rest for the weary, sigh...
I hope you get relief soon.
11-06-2016, 07:54 AM   #1632
GABoy
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Been a while since I was on and did an update. Had exploratory surgery in September, where they found and removed a large peri-anal cyst. Recovery for that seemed to go well, not nearly as much pain as when I had the advanced flap repair or the hemorrhoidectomy. However, it seems that now the flap repair has let go or re-opened as I am once again passing stool through my vagina, YUCK!! So another call into my surgeon today, was hoping the cyst removal would be the end of this for awhile...but alas, there is no rest for the weary, sigh...


Thinking of you MeLee... I hope you get some relief soon. In the end, it seems temporary respites are the best we can hope for.
11-15-2016, 12:10 PM   #1633
GABoy
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So my prior post appears to be true ...

This weekend, I thought I felt a little swelling. Yesterday, I saw a little blood. Today, there is no doubt that I have an abscess. The mucosal advancement flap has apparently failed.

I guess that lasted nearly 3 months. Back to the CRS, back to the GI.
11-15-2016, 01:15 PM   #1634
ronroush7
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So my prior post appears to be true ...

This weekend, I thought I felt a little swelling. Yesterday, I saw a little blood. Today, there is no doubt that I have an abscess. The mucosal advancement flap has apparently failed.

I guess that lasted nearly 3 months. Back to the CRS, back to the GI.
I hope you are better soon.

11-21-2016, 04:58 PM   #1635
GABoy
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Saw CRS today. There is an infection, but rather than do an I&D, he wants to try 10 days Cipro/Flagyl.
11-30-2016, 08:58 PM   #1636
lisadc1
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So, I am just finding and joining the club, unfortunately...Had surgery November 3rd to take care of anal fssures and hemi's - both internal and external, and rectal tags. Had surgery a week ago today because of an icky abscess that created a hole near my anus. I am a week out and was discharged four days ago. Still feel weak as water and so worried over this thing healing as I have crohns and am Diabetic as well. Still on antibiotics - my 9th day, a few days to go. I go back to see the surgeon for a follow-up visit on the 7th. Out of work now possibly until Jan 2nd. So completely discouraged...
11-30-2016, 09:01 PM   #1637
ronroush7
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So, I am just finding and joining the club, unfortunately...Had surgery November 3rd to take care of anal fssures and hemi's - both internal and external, and rectal tags. Had surgery a week ago today because of an icky abscess that created a hole near my anus. I am a week out and was discharged four days ago. Still feel weak as water and so worried over this thing healing as I have crohns and am Diabetic as well. Still on antibiotics - my 9th day, a few days to go. I go back to see the surgeon for a follow-up visit on the 7th. Out of work now possibly until Jan 2nd. So completely discouraged...
Hi. Sorry for what you have been through.

12-05-2016, 11:22 AM   #1638
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My seton fell out!!
I had it put in on 20th October 2015 so it's lasted pretty well. It wasn't scheduled to come out yet as I'm yet to have been on medication long enough for it to help heal (humira failed after 3-4 months and I'm on my 3rd 1st dose of vedolizumab because the first time my heart was enlarged and the second I had got a chest infection so both resulted in me missing the 2nd infusion 2 weeks later) I contacted my surgeon and he says I'll have to have surgery again- didn't say whether he was going to put another seton back in or try something else. My fistula runs straight through the anal muscles so the surgery with the highest success rate isn't suitable for me because I could be left incontinent.
Has anyone successfully got shut of a fistula?
Anything that has worked really well for you?
Or just any advice/ comments?
thanks 😊
12-05-2016, 05:32 PM   #1639
Tuff
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They couldn't do surgery on me either. The fistulas were too numerous, and the abscess I had was too high up, horseshoe. Over two years ago I went on Azathioprine and Remicade, and they closed up shortly thereafter. I haven't had any since. I think it's important to get into remission, and get the bowels healed up. I had some ulcers, and those eventually healed up too. Been in remission for over two years now. Wishing you better days.
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Inflammatory bowel disease may more than double the risk of a serious blood clot in the legs or lungs.
************************************************** ********************************************

Stelara, Warfarin, calcium, Vitamins B12, D.
Previously: 5-Asa, Cipro, Flagyl, Prednisone, Aza, Remicade.
Pulmonary Embolism, DVT's, osteopenia, Peripheral neuropathy.
12-20-2016, 05:55 AM   #1640
GABoy
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So, what's next if you've failed Humira, Entyvio and now Remicade/ 6MP? I saw my Gastroenterologist last night, and my perianal disease has flared back up. I have an abscess that needs to be drained and blood in my stool. I guess we can consider the mucosal advancement flap a failure. I'm calling the surgeon today. He already knows that there is an abscess but it was very small when I saw him and he put me on abx in the hope it would clear.

Anyway, I'm putting on a brace face for family and just saying we always knew the surgery might fail and that we're in this for the long-term. But in reality, I am so sick of this, and I've only been dealing with it for 3 years. I know most of you have been dealing with it for much longer. Anyway, thank y'all for reading and letting me vent.


12-20-2016, 07:44 AM   #1641
ronroush7
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So, what's next if you've failed Humira, Entyvio and now Remicade/ 6MP? I saw my Gastroenterologist last night, and my perianal disease has flared back up. I have an abscess that needs to be drained and blood in my stool. I guess we can consider the mucosal advancement flap a failure. I'm calling the surgeon today. He already knows that there is an abscess but it was very small when I saw him and he put me on abx in the hope it would clear.

Anyway, I'm putting on a brace face for family and just saying we always knew the surgery might fail and that we're in this for the long-term. But in reality, I am so sick of this, and I've only been dealing with it for 3 years. I know most of you have been dealing with it for much longer. Anyway, thank y'all for reading and letting me vent.
There are other biologics out there. Simponi, Cimzia and I am not sure if there are others after that. Best to you

12-23-2016, 08:14 AM   #1642
GABoy
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There are other biologics out there. Simponi, Cimzia and I am not sure if there are others after that. Best to you


Yep. We talked about those and several others. Surgeon is sending me for an MRI. Seems like a waste as when I asked him what could the painful bump be other than an abscess, he responded with a wry smile as if to say it's an abscess.
01-02-2017, 08:44 PM   #1643
Harper05
 
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Hi all. Has anyone has a fistulatomy and sphincterotomy? I have had a fistulatomy.. but not a sphincterotomy.... wondering what the difference in recovery is??
01-11-2017, 07:20 AM   #1644
MeLee38
 
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Further update: After having the cyst removed in September, I had another flare up, lots of diarrhea, and now have fecal matter leaking from the recto-vaginal fistula again (so obviously the advanced flap repair has let go and/or didn't work). Surgeon does not want to go in and repair again until he has a better idea what is causing my issues. Since my colonoscopy didn't reveal any Crohn's, they seem baffled. So now I go for a CT enterography of my abdomen (close up of small bowel etc) and get to see another GI specialist based on referral from my existing colon specialist. Based on my multiple symptoms, my GP is now thinking it may be lupus and not Crohn's. Has anyone else gone through this process, thinking they had Crohn's (GI issues, flare ups, internal abscesses, fistulas etc) only to find out it was something else entirely? I know one thing, this lengthy (2-3 years) time period of health issues with no diagnosis or head way is FRUSTRATING!
01-11-2017, 07:30 AM   #1645
ronroush7
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Further update: After having the cyst removed in September, I had another flare up, lots of diarrhea, and now have fecal matter leaking from the recto-vaginal fistula again (so obviously the advanced flap repair has let go and/or didn't work). Surgeon does not want to go in and repair again until he has a better idea what is causing my issues. Since my colonoscopy didn't reveal any Crohn's, they seem baffled. So now I go for a CT enterography of my abdomen (close up of small bowel etc) and get to see another GI specialist based on referral from my existing colon specialist. Based on my multiple symptoms, my GP is now thinking it may be lupus and not Crohn's. Has anyone else gone through this process, thinking they had Crohn's (GI issues, flare ups, internal abscesses, fistulas etc) only to find out it was something else entirely? I know one thing, this lengthy (2-3 years) time period of health issues with no diagnosis or head way is FRUSTRATING!
Sending support and prayers

01-23-2017, 02:15 PM   #1646
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hi all, I had the sphincterotomy two weeks ago and I'm still in a quite a bit of pain. I also feel like I can like ten small BM a day! I'm wondering what is causing this.. I have always taken stool softners and miralax, so I don't know whats happening. have my follow up Wednesday. Anyone have any suggestions?
01-23-2017, 11:45 PM   #1647
cmack
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Hey all!

If you have fissures hemmy's fistulas or abscesses give me a shout. I have been through it all. Even all at one time. (14 surgeries under my belt). I love to help people because I had nobody to help me for years. Once I found this group it changed my life, for the better...BIG TIME! Anybody that needs help or answers regarding these things, I urge you to just ask. I don't care if it takes all day. I will help you the best I can. I wish someone was there for me and I want to be there for you, the people.

And ladies and gentlemen! salut!

cmack

Last edited by cmack; 01-23-2017 at 11:49 PM. Reason: poor grammar
01-26-2017, 09:15 AM   #1648
dave13
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hi all, I had the sphincterotomy two weeks ago and I'm still in a quite a bit of pain. I also feel like I can like ten small BM a day! I'm wondering what is causing this.. I have always taken stool softners and miralax, so I don't know whats happening. have my follow up Wednesday. Anyone have any suggestions?
How did the follow up go? Your sphincterotomy was recent,it will be painful for awhile. Those muscles need time to heal. We're you given something for pain? I hope your surgeon answered all your questions at the follow up.
01-26-2017, 01:47 PM   #1649
MeLee38
 
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Had another CT Colon and Abdomen scan today. And of course the 2 litres of contrast liquid they had me drink gave me the WORST diarrhea. Almost exploded while in the CT machine, had to run to the bathroom as soon as they let me get up! And of course a lot of it drained out the recto-vaginal fistula, what a mess!! Meet with my GI specialist in 2 weeks to go over the results. Fingers crossed!
01-26-2017, 02:14 PM   #1650
cmack
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MeLee,

I almost had an incident in the MRI machine too!! My gosh do you have a lot of trouble right now. I'm hoping for you to get well soon. It can only get so bad before it starts to get a little better. Let's hope it's sooner rather than later.

Peace and positive thoughts my fellow canuck,

cmack
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