Crohn's Disease Forum » Your Story » Advanced Crohnís diagnosed 5-15-18


 
06-02-2018, 04:37 PM   #1
Gravitypilot
 
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Advanced Crohnís diagnosed 5-15-18

Howdy all. I hope everyone is having as good a day as possible. I donít know where to start. I am a 39 yr old male. Iíve been dealing with this most my life. Iíve had 3 fistulomies and currently have a seton. I was just scoped the 15th of May. The Dr was clearly quite rattled by what he saw. When he showed me the pictures of my distal ileum he kind of freaked out a bit. Told me he had never seen one that bad that wasnít being removed. He referred me to an IBD specialist which will take a couple months to see. The biopsy and scope agree with a diagnosis of advanced ileitis with heavy scaring and active ulcers......


I am a single father and a hard worker and this is destroying my life. The diagnosis I guess is a blessing. At least now I know why I feel so bad. My entire life I have just lived with my symptoms. Through the marines through everything I just made it work. I know where every bathroom is everywhere I go, but fistulas? A seton? How is it possible to be a hard worker and commute an hour a day each way with this? I am beside myself. I am happy to have found this forum and appreciate all who post here. I have lost relationships and almost died over this disease. Itís good to hear other peopleís stories to know I am not alone.

I would appreciate any advice anyone has on dealing with a seton and driving extended periods please and thank you.

Last edited by Gravitypilot; 06-02-2018 at 07:55 PM.
06-02-2018, 08:00 PM   #2
cmack
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Hey,

Yeah, setons are different. I have had several and they are not as bad as the alternative which is usually splaying open the surrounding skin and muscle, (cutting along the length of the fistula tract to lay it open to heal it from the inside out). I would recommend a cutting seton if the fistula isn't complex yet. I actually saw improvement from all of the setons I had, regardless of type. I have had a complex situation and it was bad, half of it was due to this disease not being spoken of as that can lead to ignorance. I used lidocaine jelly for relief from the irritation, make sure it's jelly. You can get it from the druggist usually. I hope this helps, hit me back if you need help or have any questions.

Cheers!
06-02-2018, 09:20 PM   #3
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I have had a number of surgeries. The first was here in my little town and ill advised. It started because I had this lump and couldnít sit. The local surgeon did an exploratory and opened up my abscess. He then proceeded to pack the wound with gauze every day for a month even on Sunday hoping it would heal from the bottom up over the abscess.

Of course it never healed

Next I went to UNLV and they immediately diagnosed me with anal fistula with a large abscess. The surgery was a double fistulotomy and large abscess removal. The abscess was half the size of my hand and was everywhere under my left inferior pubic ramus involving my member the surgeon said. He told me ďYou remember when we said 6-8 weeks heel time?... It will be 10-12 and I doubt you will ever sit on a hard surface comfortably again.Ē

Again the wound never healed

The colorectal surgeon Dr Joseph Thornton said it was because of granular tissue and injected the small open wound left with silver nitrate. I donít know if you have ever experienced that but WOW!!! Painful. The wound kept discharging and when the discharge would slow pressure would build up under that left side and heíd inject the open hole with silver nitrate. He did that 5 times. Finally in December after me telling him every single time I saw him I thought it was still a fistula he finally got me an MRI and indeed I had a fistula. So 12-22-17 they did another fistulotomy. Come March I had the same leaking hurting hole at about 10 oíclock. Dr Thornton put acid in it AGAIN!

I sought other help at the University of Utah

April 12th Dr Pickron installed a seton in my active fistula. It discharges quite a bit and is absolutely miserable. Work is a nightmare. He referred me to a Gastroenterologist Dr Steenblick. May 15th they did a colonoscopy and endoscopy. I have advanced Crohnís and have been referred to an IBD specialist Dr Valentine.

I have had watery stool so bad in the past I was passing out at work. Iím 6í3Ē was down to 146 pounds. I went to the ER in Truckee CA and they just basically shrugged. I have been to Drs many many times in my life and they have always told me ďEat more fiberĒ or ďEat more oftenĒ I have tried so many things.... at least now I know why it has never worked.

I will give lidocaine a try! Thank you. Dr Pickron said depending on how I respond to treatment the seton may be permanent.

Last edited by Gravitypilot; 06-03-2018 at 10:31 AM.
06-03-2018, 11:52 AM   #4
cmack
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Wow, that is pretty painful by the sounds of it, silver nitrate. That is the first time I've heard of it used like that. Even if the seton is permanent, it will still make you feel better than you do now. It sounds like they plan on a draining seton to me, it should reduce the pain to a tolerable level once you get used to it. I also used 2'' or even 4'' gauze pads that were folded up and placed in, "the crack" to catch any drainage around the seton or any other leaky bits. They seem to stay there fine with a light touch of vaseline or Zincofax cream, this helps the gauze not to stick to your wound as well as holding it in place better. The lidocaine was a life saver, I used it before examinations too. My colorectal surgeon said he was glad that I was using it, so did my general surgeon. Keep in touch, we have a LOT in common.
06-03-2018, 02:32 PM   #5
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I use 4Ē cotton sponge that I chop in half. I have to get them from my Dr. My pharmacy doesnít have any that are cotton and the synthetic ones really irritate my skin. I hadnít thought of using anything to keep them in place. It sucks when one falls out though... ewww This site is a miracle. Thank you for responding. Take care!
06-04-2018, 12:21 AM   #6
Lynda Lynda
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Hey,

splaying open the surrounding skin and muscle, (cutting along the length of the fistula tract to lay it open to heal it from the inside out).
This is what I had done in 1992.
When I got home after the procedure I decided to look at it using a large hand mirror. I was horrified to see what had been done !
06-04-2018, 12:26 AM   #7
Lynda Lynda
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Thanks for sharing. 🌻
06-04-2018, 01:01 PM   #8
Gravitypilot
 
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I used a mirror also to look at the double and abscess removal. It was horrific. I could put two fingers my middle and ring finger in all the way to depth for at least two weeks. It was scary.
06-04-2018, 07:50 PM   #9
cmack
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I used a mirror also to look at the double and abscess removal. It was horrific. I could put two fingers my middle and ring finger in all the way to depth for at least two weeks. It was scary.
You need to look... that's for sure! I can understand what you mean, it does usually get better though. I never let anyone look there besides a doctor anyways. NOYB policy...
06-06-2018, 06:45 PM   #10
Scipio
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I don't understand how for all those years you could be far gone enough to develop fistulae, abscesses, and get a seton put in and yet still not get diagnosed until last month. During all that time didn't at least one doctor decide to do a colonoscopy to see what was going on down there?
06-06-2018, 11:56 PM   #11
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They tried last June but it was to soon after my big abscess removal and double fistulotomy and I told them I wasnít ready but the Dr examined me anyway to see for himself and I bled.... all over his hand and the table and it was a long drive home tell you what. That guy was in Elko Nv just 3 hours drive one way. My tiny town has no Gastroenterologist and I was never referred to another till I started dealing with the Universiry of Utah. Dr Pickron works out of the Huntsman and a clinic at the U and he finally referenced me to a gastroenterologist to get scoped because of the recurrent fistulas. Being 240 miles from my care team has proven challenging but I am very grateful to have Drís and nurses that actually seem to care and have all the specialists I need. Hope that answers your question itís a combination of logistics and ineptitude.
06-07-2018, 09:54 AM   #12
cmack
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I had to drive like that too, it just isn't right. I have experienced trying to sit on an abscess myself... right after the doctor jabbed at it as well, unbelievable! You have my support, Gravitypilot.
07-13-2018, 06:12 AM   #13
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Itís 4 am and today is the day. Today I see the IBD specialist Iíve been waiting almost 3 months for. I am super anxious. Just 4 hours drive time alone with my thoughts woo hoo.
07-13-2018, 09:27 AM   #14
cmack
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Good luck! I hope things go great today at your appointment. Be sure to fill us in. Cheers!
07-13-2018, 12:31 PM   #15
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I arrived an hour early and the office is running an hour behind. Ha ha ha ha
07-13-2018, 12:59 PM   #16
Lynda Lynda
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i arrived an hour early and the office is running an hour behind. Ha ha ha ha
😯....😄
07-13-2018, 11:44 PM   #17
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Well 6 hours later I qualify for three studies..... Iím going to do the diet study.
07-13-2018, 11:56 PM   #18
Lynda Lynda
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Well 6 hours later I qualify for three studies..... Iím going to do the diet study.
Sounds like a good choice. 👍
07-14-2018, 09:37 AM   #19
cmack
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I hope it helps. Diet can make a big difference for many.
07-14-2018, 10:53 AM   #20
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I hope it works to reduce the inflammation. The other studies are a triple drug trial injection , infusion, and oral or just injections but at a far higher dose than is currently used. All the drugs are terrifying. Suppressing your immune system doesnít seem like the greatest idea to me... So we shall see if this works. If not they will put me on steroids and Humira.
07-16-2018, 11:43 AM   #21
Scipio
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I presume your colonoscopy showed IBD. Did they give you any detail on what the colonoscopy showed?
07-16-2018, 01:22 PM   #22
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Hi Gravity Pilot

I'm interested to find out if you know what kind of foods the studies are recommending for fistulas/abscesses. Are any of the diets based on elemental/semi elemental liquid diets?
07-16-2018, 02:13 PM   #23
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Itís the DINE CD study. It is researching no carb diets I believe.
07-16-2018, 02:15 PM   #24
Gravitypilot
 
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I presume your colonoscopy showed IBD. Did they give you any detail on what the colonoscopy showed?
For certain. They gave me a detailed report with pictures. My colon is fine but my small bowel is severely inflamed, heavily scarred, ulcered, and eroded.
07-17-2018, 07:35 AM   #25
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Alright so could be along the same lines as DVD or Gaps diet. Hopefully you will find some well deserved relief with this diet.
08-01-2018, 08:55 AM   #26
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Well...... i May have c-diff again. Iíve had it three times in the last two years. I am waiting on the test results takes over a week. If I am positive I do not qualify for the study...... Medical limbo is seriously a no fun place to be.
08-01-2018, 09:52 AM   #27
cmack
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I hope the test is clear. Good luck!
08-01-2018, 09:15 PM   #28
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Thank you for the support!
08-04-2018, 02:47 PM   #29
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Indeed the test was clear. Got the results yesterday
08-04-2018, 07:33 PM   #30
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That's great news! I hope the study goes well too. I treat my disease with diet and it makes a big difference. I'm being monitored by a doctor. It doesn't make your disease go away you just feel way better when on the appropriate diet. Best wishes moving forward!
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