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Crohn's Disease Forum » Your Story » 12 years and counting


07-08-2015, 12:22 AM   #1
Dan1970
 
Join Date: Jul 2015
Location: Bothell, Washington
12 years and counting

I was diagnosed with Crohn's in my middle 30's and have probably had it since my late 20's. At first I thought is was just too much coffee or beer that made my bowels loose and pretty much just avoided them when I needed to feel good. Then I started to get terrible skin rashes on my hands - just my hands and nowhere else.

Five years down the road and my symptoms had been getting worse and worse over time. I started noticing a discharge around my anus and open sores when I would wipe. I would actually pack my butt crack with toilet paper to keep my underwear from getting too soiled. I finally went to a Dr. because I was really grossed out by the whole thing and my wife made me. I was diagnosed with anal fistula. They did a battery of other tests which led to a colonoscopy and finally a diagnosis of Crohn's disease.

Surgery dealt with the fistula and I started on Remicade. Remicade worked pretty well for several years and then my symptoms started to get worse - and worse. We doubled the dose and that worked for a while then it stopped. I had developed an immunity to Remicade. Oh yeah, I also found out that I am allergic to Imuran - two weeks in a hospital on a delaudin drip to treat the pain of pancreatitis while my body disposed of the Imuran. I think I have been hospitalized for at least a week every second year since for one thing an another related to my Crohn's.

On to Cimzia, and that worked pretty good for a bit and until it didn't. So I tried Humira and that worked pretty good until it didn't. Steroids have never worked.

About 7 months ago, I started Helmenthic therapy. That's right. I infested my guts with Hookworm and Whipworm on the theory that they would protect themselves and in doing so settle my symptoms out. That helped a little bit but its too soon to call it a failure. About two months ago, I added CBD - a non psychoactive canniboid - medical marijuana. I live in Washington state so its all legal here. Its too soon to call that a success or failure too.

Anyway, I am running out of options. I feel better but am losing weight and having more control problems. I found this forum looking for recommendations on adult diapers because I have had 5 or 6 major incidents in the last few months and never in the decade before. I've managed to avoid a humiliating situation thus far but the odds are running thin. My only surgical option is a complete removal of my colon and I don't want that.

Sorry if I said too much. I've always had a hard time talking about my disease, even with my wife who is a nurse and deals with Crohn's patients every working day of her life.
07-08-2015, 01:12 AM   #2
Caitlin84
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Location: Milwaukie, Oregon

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Welcome! I have a friend at work who always teases me about trying helmenthic therapy. I'm very curious to talk to someone who has tried it. Some of the research is very interesting.

I'm sorry to hear you are running out of options and hope you find support here.
07-08-2015, 01:28 AM   #3
Dan1970
 
Join Date: Jul 2015
Location: Bothell, Washington
Ask away Catilin84. I'm happy to share. I didn't want to talk about it but I confided in my Dad and he told my sister and now the whole damn world knows I have worms in my gut. Most folks are just curious.

First things first, there are only a couple of providers. You live in the US so there is only one unless you want to travel to Tijuana on a regular basis. Its not exactly illegal but its not approved by the FDA as a treatment for anything.

Hookworm is applied as a patch on your arm. It itches like crazy as the little guys burrow through your skin and you have a rash the size of dime for a week or so. I've had the odd autoimmune reaction - worsened symptoms for a day or two - but usually the itch and the rash are the worst of it. They settle in your upper stomach and have generally more systemic effect. You start with a small colony and build up every couple or months or so until you find a colony size that works.

Whipworm gets put in a glass of your favorite cool beverage. They settle in your colon. You need regular doses until you start getting a therapeutic effect then smaller doses over greater periods of time to maintain the colony.

Neither breeds inside your body. You cannot pass them on to your friends and family - assuming you use modern plumbing.

Maybe they work - maybe they don't. It takes at least a year to post a definitive answer to that. Some have reported side effects like shortages of certain minerals in their body and mental side effects like depresstion that went away after the colonies were killed off.

You really need to get your GI to sign off on it because you are not buying from medical professionals. You will need someone in your corner to help out if you need it.

As far as efficacy is concerned, I have seen some improvement over the last 7 months and as noted some increase in other symptoms. I don't know if it is working or not. All my major accidents, if you will, have been because I did not have access to a bathroom - I was in a parking lot, spent too long getting out of a conversation with my boss, all the stalls were full for too long, nothing on that highway was open that early - that sort of thing.
07-08-2015, 01:35 AM   #4
Caitlin84
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Do you see the worms in the toilet? I'm an RN with Crohn's disease, so it takes a lot to gross me out. For some reason the idea of that does though. Silly, I know. It's not something I'm willing to try yet, as traditional meds have worked well for me. Like I said though, its interesting to hear from someone who has tried it though. I'll be curious to hear your thoughts on it once you've done it for a year.
07-08-2015, 01:38 AM   #5
Dan1970
 
Join Date: Jul 2015
Location: Bothell, Washington
No worms in the toilet. They lay microscopic eggs that turn into larvae outside your body. I wasn't cool with it either until traditional meds stopped working. You have no idea how depressed I was, I had no idea for that matter, when I made the decision to try this. If nothing else, its given me a year of hope.
07-09-2015, 04:12 PM   #6
24601
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Join Date: Dec 2013
Location: London, UK
Hi Dan,

Welcome to the forum! First off there is no tmi here. I really don't think you will ever gross anyone out here or offend them. And I say that as someone who has always had delicate sensibilities - I only recently learnt to look at a Bristol stool chart! But I think it's incredibly important for us to have somewhere to talk about what we go through and seek solutions. And where better than a forum where most will have shared these embarrassing experiences? You are amongst friends.

I feel you on the coming to the end of the road situation. I'm currently having a stem cell transplant for Crohn's. If you'd like to know more then I'm happy to answer questions and I also know there is a trial in the US that is currently recruiting.

Other non-surgical possibilities are anti-MAP antibiotic therapy (Dr William Chamberlin in New Mexico is taking on patients and will work with your local doc too if agreeable, other forum members have had good results and worked with him, tagging Irishgal and others for more input), the Qu biologics vaccine trial and Entyvio.

I tried helminth therapy myself back in 2005. I drank little vials of TSO pig whipworm eggs delivered from a medical biopharma company in Germany called Ovamed with my GP overseeing. Very reputable source if anyone wants to try - recommended to me by Joel Weinstock. Hard to say how well it worked for me as I was also on EEN but pretty desperate so throwing everything at it. They're expensive to buy though and with various other things going on - a post-op abscess and declining health because of that I didn't continue the experiment. Plus I really needed better monitoring from a GI to make a judgement. I do hope it works for you. I can say I had no adverse reaction and that it wasn't in the least gross - I just drank a tiny vial of saline, nothing more to it

I understand so well the need for hope. Please do keep updating us on your situation. I do hope knowing that other people are experiencing similar things helps just a little.
__________________
Stricturing jejunoileitis dx 1996 aged 17
Current treatment: stem cell transplant
Previous treatment: Humira + methotrexate
Past treatments: prednisolone, azathioprine, budesonide, pentasa, EEN (oral and NG), elimination diet, SCD, whipworms, 6mp, Remicade, anti-MAP antibiotic therapy
Surgeries: small bowel resection and strictureplasties in 2001, 2005, 2009, 2014
07-09-2015, 04:52 PM   #7
irishgal
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Hi Dan - I've considered helminths but I just had to exhaust other options first. I couldn't bring myself to do it and even my integrative health doc was a little skeptical. I understand about not having any options though, so i feel your pain! Truly, I do. I've been where you are. Depressed, kids think I'm going to die, considering diapers while I still have a kid in diapers, no idea how I'm going to take another month of bring sick...all of that lovely Crohn's takes away your humanity kind of stuff. You're in good company here!

Lucky for you, this forum has TONS of great options for treatment! When conventional drugs failed for me (much like what you describe) I decided to take a flyer on AMAT. I went from death's door to full remission in 6 weeks. I can't say that's typical, but I've been sick for two decades so I'll take it! I've been good for about 7 months now. I was also able to have my blood tested for the MAPish bacteria and was strongly positive. I can't say enough about my teams of docs who have saved my life. They kind of started a website with a lot more interesting info about this type of treatment and links where you can research more. It's thecrohnsinfection.org. If you're at all interested, I'm happy to connect you up with these docs as best I can. Read it over and see if it's for you. PM me if you want.

24601 - heard about the stem cell stuff years ago! Glad they're finally trialling it. Hope it works for you. :-) Sorry AMAT didn't work. Truly think Crohn's is multiple diseases with different treatment paths for each one.
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