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10-20-2013, 12:59 AM   #331
aruschmann
 
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When I was 14 I had a fissure. I remember a really painfull bm and feeling it rip. After a few days of increasing pain I saw a general surgeon. He explained the surgery and it all healed fine. But I started vomiting and constant diarrhea. This all started over Christmas break from school. Many tests and I believe 3 months later finally got a Endoscopy done and was diagnosed with Crohns. Ive had Crohns over 17 years and had many fistulas but no more fissures. Sounds like you might have Crohns mine is very active in colon and rectum but I have 6 major points of inflammation total all through my digestive tract. Sounds like you need to see a Gastrointestinal Dr and have a scope done. That should confirm Crohns or not
10-29-2013, 01:11 PM   #332
idlebrain
 
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Have a seton procedure scheduled next week because of a persistent fistula even after 6 Remicade infusions. There were cycles of apparent healing followed by worsening of fistula condition all along. I guess the time has come for the next logical step. Not very pleased but I guess you live and learn. Life was quite different just an year ago (Sigh!!).
10-29-2013, 04:46 PM   #333
BlessingsK
 
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Idle brain, I wish you the best with seton. Mine has really helped. Ended the pain down there from chronic infection. Gives body a chance to drain and heal, esp when combined with Remicade. Just make sure you keep it as clean as possible down there. I really love my handheld shower head I can take off and spray anywhere. And sitz baths, then dry good and use gauze as needed. Keeping you in my prayers for successful procedure, excellent surgeon and complete recovery. I know how interfering these issues can be to life, but the more we can accept and even have gratitude for all these life arrangements, the easier it is to bear. So grateful we can understand, support and encourage each other here bc I don't know anyone in my regular circles who has seton! And instead of trying to explain it, I just say 'colo rectal issue'! But here, I can get specific and be understood
10-29-2013, 05:22 PM   #334
idlebrain
 
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Thanks BlessingsK. Good to hear some positive side of the seemingly bothersome procedure. Good luck to you as well.
Will post on my experience once done. I was told I will be given IV sedation and a local anesthesia. Do you know if that is typical? Also, can you please tell me what the typical recovery time and process is like?
10-29-2013, 05:28 PM   #335
BlessingsK
 
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Well, I've had my seton in about 3.5 months. I began my first remicade infusion about 2 weeks after having it inserted. I actually meet with colo rectal surgeon tomorrow and he will let me know what he thinks. I'm hoping he will just snip it out in the office and say it looks like tissue around it is closing/healing.
I've heard that some people have their seton in for 6 months or longer. Every doctor seems to be different. What they told me was that if it didn't heal shut, they would do a flap procedure, removing tissue from somewhere and repairing hole to shut it closed. Hoping to avoid that.
Like I said, I've tried to do my part with clean diet (paleo= vegetables and meat and a little fruit) and no stress and a lot of showers, baths and gentle wet wipes. No stress, ahh, that sounds good. Wishing you the best.
10-30-2013, 06:43 PM   #336
SoOoO CoNfuSeD
 
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Hi, Looking for a little advice, thoughts, suggestions. My limit with poop and bum talk with my friends and close ones is drawn at fissures and fistulas. I've had issues with fissures and fistulas for about 2 years now. It had gotten to the point where every time i had a bowel movement, the toilet was filled with bright red blood and it felt like i was literally pooping knives out.

Every since i began Remicade, last January, the skin tags mostly went away and shrunk, the pain was relieved practically the next day by at least 70%, and pooping became more bearable. One thing though, is that there has always continued to be puss leaking. I'm due for treatment in 2 days. BUUUT here's what's freeking me out... my stool is normal and has been since the beginning of the treatment. I have particularly been feeling great this past week, eating well, normal bowel movements, barely any anal pain really, etc....Today, for the first time ever, i discovered some brown stuff in my pantyliner ... anal leakage? This has never happened to me before, not sure why it is, nor what to do about it. I saw my GI last week and I've asked her what i should do about the fistula and fissures ... she pretty much brushed it off as she always does and said there isn't much to do. I take sitz baths every day, i've tried nitro and a bunch of other creams...She says docs don't really want to operate down there, much less in the presence of a chronic inflammation disorder. I was really disappointed... Sure, it's much more bearable, but am i just suppose to accept that they're there and live with them? Isn't there more that can be done? And what is up with this leakage? Should i be worried? I feel like i've come a long way and i am close to remission, but these little anal issues are quite persistent. Help!
10-30-2013, 08:33 PM   #337
BlessingsK
 
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Confused,
Sorry to hear about the issues. I just saw colo rectal surgeon today and he said same thing about not wanting to do any procedures down there that aren't absolutely necessary.
I originally started w abscess that turned to fistula. Surgeon did procedure under anesthesia to locate fistula and place seton to keep drainage going. Just had that removed today, praise God. I just wonder if you've seen surgeon to assess fistula or of your problem is more fissures. I suppose it's important you locate the source of brown you found on panty liner - like stick gauze up in there and see if its just slight leakage from anus or skin tags that weren't fully cleaned or actual new fistula (hope not). Take care, I know this is hard.
10-30-2013, 08:38 PM   #338
ronroush7
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I have had two or three fistulas since 1989. I was actually diagnosed with Crohn's in 1990. In 1992, I had an abscess that bled for three months before the doctor drained it and used intravenous drugs.

2
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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.
10-31-2013, 10:36 PM   #339
little dove
 
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having fistulas fissures and such is a pain in my ass yesterday i got out of the hospital with the very rare rash pyodem a and ecthyma gangrenosum, very sacary its like gangarine, its a abscesse that tunnles out from the inside out. I hope the treatment they gave me works
11-01-2013, 12:04 AM   #340
ronroush7
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I hope it works for you, little dove.
11-01-2013, 05:22 AM   #341
DavidXU
 
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Finally I am in this group and glad to see you guys. Got an abescess in the right side of my anus yesterday. Now it is already very painful when I sit on a chair. But I am on anti-tuberculosis medication for 6 months and it seems everything goes well! Can imagine that!
No doc knew I got CD or intestinal TB. It even looks like that god is pondering which one be assigned to me.
I am really down. Never felt so hopeless.
11-01-2013, 05:30 AM   #342
ronroush7
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Sorry you are going through this. Just said a prayer for you.

2
11-11-2013, 12:07 PM   #343
idlebrain
 
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Hi all,

Was wondering if someone can share their post-seton procedure experience. Had one placed last week. The first 2 days after surgery were relatively OK but have been experiencing sharp pain especially while sitting almost rendering me helpless since the last couple of days.

A little concerned as I was expecting to feel gradually better but seem to be heading the other way. I was told that the rubber band that was placed along with the seton thread can be removed in 3-4 weeks. Was wondering if that is the source of pain and discomfort and if an earlier removal would help.

Any thoughts from those who have been there? Thanks in advance.
11-12-2013, 11:25 PM   #344
aruschmann
 
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I had a non cutting Seton placed in August and havnt noticed much difference pain wise. Still hurts to sit or walk and still having lots of Diarrhea so thats not helping anything
11-14-2013, 08:51 AM   #345
little dove
 
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so its been about 10 days since my hospital stay and new treatment for the pyodem a and ecthyma gangrenosum and its working thank god. its slow but everyday is a bit better. I have had crohns for 20years and this year its been one thing after another. what really sucks is knowing im never going to get better and my type of crohns is rare and im 100% full with no more options left, ive been on it all. only predisone morphine humira and sense of humor gets me through the day as well as my son that they told me i would never have, well i cant have anymore kids now i dont even have a period anymore, my body is too sick. today i am rolling around in selfpity, ill snap out of it soon i hope. ill be alright i dont remember what it feels like too have a good day so in my mind i dont know different. anyway thats it for the moment i just had to vent a little, depression is major in my life bc of beening sick for so long and taken down at a young age, ive missed out on alot of normal life experinices. but i tried to remind myself that i have this illness bc im strong and able to deal with it most times. its all good.
11-14-2013, 02:02 PM   #346
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No fistulas or abscesses yet (fingers crossed) but I have had some really bad, painful fissures. Once I had a fissure so bad that I was unable to walk. And my insurance company will never ever approve any of the creams for pain relief or healing. They cost around $500. They say it isn't medically necessary!!
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11-14-2013, 06:30 PM   #347
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Hey everyone. I am a mother of a 14yom with a fistula that started this past summer. We are currently undergoing testing for Crohns. Any suggestions anyone gave give that helps cope, and manage pain and discomfort is greatly appreciated. They have put him back on Flagyl. This seems to heal it temporarily, of course it comes right back.
11-14-2013, 07:35 PM   #348
BlessingsK
 
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Carol,
Sorry to hear your son has fistula. With me, they did procedure under anesthesia to determine exact location then inserted seton for about 3.5 months, now hoping remicade keeps closing it. I have found that a removable shower head, lots of sitz baths, gauze w saline solution and careful cleaning are all helpful. I'm also a huge fan of SCD diet - no sugar helps immune system. Praying these tracts close for all of us. I understand how disrupting this is. I'm still not back to work yet. Good luck y'all.
11-14-2013, 08:07 PM   #349
Jison0612
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I was diagnosed cause of pereanal fistulas and abscesses and I have a mild case of crohns so no this dose not mean u have a savere case of crohns
11-14-2013, 08:41 PM   #350
Irish86
 
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what is scd diet
11-14-2013, 08:43 PM   #351
zazasnana
 
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About 2 years ago I started a battle with a fistula. Never have been diagnosed with crohns. I had countless setons placed, a fistula plug, always came back. I then had a fistulectomy. My surgeon had to go back in and clean it out one time after as it didnt heal quickly enough and started to infect again. I am a liver transplant recipient and am on Immuno suppressant drugs. Its been 2 months now and it seems to be healed and gone. I know it could come back, but im hopeful my battle is over. Ive had no problems after the surgery as I was told I could have problems with leakage after. I pray you all have good outcomes with your journeys.
11-14-2013, 09:32 PM   #352
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I wish to reassure anyone. I have lived with a recto-vaginal fistula passing gas and pus on and off for the last year. I was definitely discouraged at first. Then I became hopeful when it closed. It seemed it had healed. I was told by nurses Remicade often worked to heal fistulas. Then, my gynecologist said ``you must continue to exercise``. So I tried my stationnary bicycle. Bang! It reopened just from the pressure of the seat. I stopped bicycling. Then tried a reclined bicycle at the gym. That seemed to ease the pressure. I tried swimming. That was helpful. The chlorine in the water seemed dry the vagina temporarily. But I have found most helpful taking long hot baths wiht salts or baking soda to relieve the inflammation in the rectum therefore easing the swelling. I had many vaginal infections. I was really fed up of the whole situation. Then it got better for a while.The fistula gradually stopped oozing for several months, passing very little gas. Unfortunately, it has reopened recently after one time sexual intercourse and has given me a full blown persistent vaginal infection that I am treating with creams and flagyl. I was absolutely convinced my sex life was over. I felt very depressed. So I asked my GI specialist for an operation. I thought that might help my situation. Soon I became really scared. I imagined myself with a permanent ostomy. I don't think I can live with an ostomy. I love swimming. I love life and can't see myself living with a bag. I feel awful. I am scheduled to see the surgeon by the end of this month. I think I might just give up the operation. I really do not know what to do. I have two great teenagers that I love very much. Every time I get sicker, they get very discouraged and afraid for me. They are so scared to become as sick as I am. I feel I must do everything to keep my hopes up and try to reassure them. I am hopeful I will find a solution somehow. I am presently injecting myself with colloidal silver in my rectum using a syringe. It dries up the area but does not seem to heal the fistula.I have not given up hope. I am willing to do anything to get better. I will keep all of you posted if I find something really good. I am now taking large intake of vitamin C and will start again the carrot juice drinks on a more regular basis. I am thinking of searching for healers. I empathize with you all. I wish you all respite from this despicable condition. If I find other means to alleviate my pains I will certainly share them with you with great joy. Never give up. There is a solution out there to be found. With everyones efforts, we can find a cure. So be courageous and stay positive. I love you all. Mj
11-14-2013, 09:42 PM   #353
BlessingsK
 
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what is scd diet

SCD stands for specific carbohydrate diet. Introduced in book Breaking the Vicious Cycle by Elaine Gotschal (sp?). Helps put Crohn's into remission. Very similar to Paleo-- concept is feed good gut bacteria, starve bad bugs and candida and digestion / gut lining can heal quite miraculously. It's meat, fish, vegetables, little fruit, little homemade yogurt. You release all grains (wheat, rice, quinoa, corn), sugar, most dairy, alcohol. Join me and bring Brussels sprouts to the next cocktail party you're invited to! Hey, as long as I have one or two good poops a day, I'm sticking to it!!! Prayers for everyone. I'm with you.
11-17-2013, 03:15 AM   #354
igrik1986
 
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9 months I am still not healed. Evermore considering some that I have some side disease as crohns. Could some of you experienced tell, what kind of tests I should start with to possible find that condition?
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11-18-2013, 12:24 PM   #355
exit4
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A combination of tests may be needed for a Crohnís disease diagnosis.
The symptoms of Crohnís disease can be similar to those of other illnesses, including irritable bowel syndrome (IBS), and ulcerative colitis.
To rule out other causes and pinpoint a Crohnís disease diagnosis, your doctor may run one or more of the following tests.
Blood Work
Blood samples are tested for anemia or signs of inflammation
Stool Tests
Stool matter is analyzed for signs of bleeding, and infection by bacteria, virus, or parasites
Barium X-ray
When ingested via enema, barium allows internal organs to be seen clearly on an X-ray
Colonoscopy
A procedure using a small tube to view the rectum and the intestines
Biopsy
Tissue sample of any inflamed area taken for lab analysis
Computerized Tomography (CT)
A procedure utilizing computer imaging and X-ray scanning
Video Capsule Endoscopy

Here is the great websites to find more information:

http://www.crohnsandcolitisinfo.com/...ast_ggl_036374

http://www.mayoclinic.com/health/cro...-and-diagnosis
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11-30-2013, 07:38 AM   #356
little dove
 
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So i gat the results and i only got the one pyodema gangrenosum, and its treatable, its just going to take time and for me not to pick at it but all looks good for me to start humira again soon which is a good thing
12-05-2013, 11:40 AM   #357
ey218
 
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So... brand new and first post. October 29, 2013, diagnosed with peri-rectal abscess, which was drained. November 26, 2013, had fistula surgery with insertion of a Seton. This week, December 3, 2013, had a follow up visit where the colorectal sx told me that I had polyps, which were removed and non-cancerous, as well as multiple fistulae, all of which necessitates IBD work up. I had Prometheus blood test on 12/3, and will be going for colonoscopy in about 3-4 weeks. What a great Christmas! I guess I'm putting this history out there for advice. I have a Seton, which is just miserable at this point in time. I'm having a hard time sitting and wearing anything but sweat pants. I'm an attorney, so sweat pants in Court are a bit of a problem. Anyone out there with a similar history that can give me some hope that this gets better would be great.
12-05-2013, 11:57 AM   #358
lgpcarter
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There are lots of people here who have had success with setons, so I am sure someone will post something soon. I just wanted to send my support - I am heading in for seton placement and fistulotomy on December 17th. I have a desk job, so am dreading the return to work and having to sit on my ass all day after surgery!

Hope you get some answers and some relief after the scope. Remicade really helped keep my fistulas quiet and closed for years and kept me in remission.
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Diagnosed in with Crohn's in large and small bowel in 2000.

Seton placement (2) and fistulotomy December 2013. Setons removed July 2014.

Laparoscopic Right Hemicolectomy July 2016, 25 cms removed

Current meds: Entyvio every 8 weeks, Imuran 50 mg, Flagyl and Cipro 500 mg twice a day
Previously: Remicade, Humira, Simponi, Pentasa, Sulphasalazine, Entocort, Stelara, Methotrexate, Prednisone

Last edited by lgpcarter; 12-05-2013 at 03:53 PM.
12-05-2013, 03:36 PM   #359
BlessingsK
 
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Hang in there, my experience w seton has been so far, so good.
Placed July 2013 after nasty abscess and drain.
Kept hole open and draining, began remicade in August, closed some.
Seton removed in Nov, keeps closing, now just little fecal drainage out hole caught by 2 in gauze the couple hours after I go #2. See colo rectal surgeon next week.
I keep showered and sitz baths.
Pray it keeps closing. But to the attorney, I have been off work throughout this (dx Crohn's, month of May spent in hospital, so weakened it has taken 6 months to have energy to go back to work). I'm a doctor and tomorrow is first day back.
I know I could only wear baggy shorts and airflow and minimal sitting was required back when seton was placed.
I'm sorry guys, but my experience was I couldn't work while I was trying to heal early on. This is a serious condition and if its not kept very clean, or if sitting aggravates (it did me), I just couldn't risk another one or a serious infection. Money is tight and I was denied disability, but like I said I'm going back to work tomorrow and putting it in God's hands. If I need to work part time doing something like retail, I will to heal this.
Hard decisions, standing w my brothers and sisters here.
12-05-2013, 03:58 PM   #360
lgpcarter
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Thanks BlessingsK. It is so great to have the support of knowledge of those who have been through similar problems and procedures.

I have an excellent workplace and very good benefits, so I am very lucky to be off at least until January 2nd with no loss of pay.
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