Advice/experience regarding Crohn's treatment

[danmc]

I’m looking for some advice and/or personal experience regarding Crohn’s treatment.

I’ve made a similar post in the “Health Issues” section but thought I’d try here in a place with more “foot traffic.”

Summary:
End of September last year I went to the ER with what I thought was a hemorrhoid, but turned out to be an abscess. It was lanced and drained, and I ended up missing 5 weeks of work due to the pain.

Then the abscess wouldn’t heal and turned into a fistula. I had a fistulotomy in January and that hasn’t healed up yet. Still draining and sore.

About 5 weeks ago I met with the colon-rectal surgeon and a PA that specializes in Crohn’s treatment, and they both suggested I go on one of the biologics: Remicaid, Humira, or Cimzia. The CRS said that the fistula wouldn’t heal unless I used one of these treatments.

Of course I’m very hesitant to start one of the biologics due to the risks and lifelong commitment of using them. I asked for more time to consider it and have made an appt. to see a GI in June for a second opinion.

I have been following the McD WOE for several months now very strictly, sort of a modified elimination diet. (I had followed the WOE a few years ago but got complacent and although my diet was still vegan I began eating fried foods and added back gluten in my diet, which I had discovered caused me issues in the past.)

The only adverse symptom of Crohn's that I've had is the literal pain-in-the-butt. Of course I want that to heal, but because I haven't experienced any other major symptoms I'm wavering on the biologics treatment.

Before anyone suggests it, I have emailed Dr. McD with no response (which I certainly don’t hold against him because I know he’s extremely busy and I’m sure reluctant to give out medical advice to non-patients.)

Thanks!

[colonyofcells]

All medicines have side effects. If there seems to be no need for the medicines, there is no need to take them.

[Lesliec1]

There used to be a link for "success stories by disease" but I can't find it now. You could look through the list of stories for people with Ulcerative Colitis/ Crohns.

Other than food, do you consume caffeine, alcohol or tobacco? I ask because I used to have UC which is similar to Crohn's so I know a little about it.

My personal opinion is that these diseases are so severe that you may need to get well via drugs. That doesn't necessarily mean biologics. Docs want to push those for many reasons, but you could ask, "What did you prescribe before the biologics?" They haven't been around that long. I'm guessing prednisone and something else. You could explore those options, although they are not attractive options either. Also, just because you are on a biologic, it doesn't mean you can't get off it, correct? I don't know for sure. I'm just asking. Anyway, I completely understand your reluctance to start a biologic!

Once you are well, this WOE should absolutely protect you against getting it again.

BUT it sounds like you are not getting worse, and may be getting better? I couldn't really tell except that you don't have other symptoms? If you feel you can wait until a June appt, that seems like a good sign, right ? Obviously, if you start getting worse, act immediately. I probably don't have to tell you that these diseases become life threatening fairly fast if untreated.

[danmc]

"Other than food, do you consume caffeine, alcohol or tobacco? I ask because I used to have UC which is similar to Crohn's so I know a little about it." Other than sneaking a half cup of coffee here and there, no caffeine, alcohol or tobacco.

"Also, just because you are on a biologic, it doesn't mean you can't get off it, correct?" Of course you can always stop, but this would go against the advice of the doctor because you will develop anti-bodies and the treatment will no longer be effective. And since Crohn's is chronic, if there was another flare up you wouldn't be able to go back to it.

"BUT it sounds like you are not getting worse, and may be getting better?" No, actually not getting better, seems to be getting a little bit worse right now. Fistula won't heal, still draining and bleeding and sore. I want to see the GI for a second opinion before making the commitment but I can't see them until June 2nd.

Thanks for your feedback!
Dan

[Lesliec1]

"Also, just because you are on a biologic, it doesn't mean you can't get off it, correct?" Of course you can always stop, but this would go against the advice of the doctor because you will develop anti-bodies and the treatment will no longer be effective. And since Crohn's is chronic, if there was another flare up you wouldn't be able to go back to it.

When I was in a hospital for a UC attack, they convinced me to get me on Remicade. Later, when I was out, my regular GI Doc said "That's not good. You're not a candidate for Remicade because you haven't had an attack in years." So I stopped it. Then, years later, a Rheumatologist tried to get me on Remicade again for RA. "I said no, I can't because I was on it and stopped" (and repeated exactly what they told you.) He said that's not a hard and fast rule. So anyway, maybe do more digging about that. Also just weigh the side effects between that and whatever else they offer, drug-wise.

Coffee is a huge trigger so be careful with that. In my case, I now know for sure that alcohol was the main trigger, even though I barely drink. I always drank less than once a week.

Also, I have seen many different GI's in the past and they are all on the same page when it comes to drugs. I'm not trying to be negative. I just want you to be prepared. I sincerely hope you find one who is better than the rest! Be careful and if it gets worse, don't wait. Make someone see you now, even if you have to go back to the original doc. I ended up in the ER once from waiting too long. That was expensive.

[figlover]

Hi, I had a fistula that made its appearance when I was nineteen. Upon hearing from a doctor that they would have to 'go up there' for an exploratory diagnosis, I undertook the job of figuring out the cause of it. I figured diet played a role as the fistula would become inflamed from time to time depending on what I was eating, or so I assumed. I played around with food combining and fruitarianism from the Natural Hygiene regime. It did help the inflammation aspect but it did not heal the fistula.

What made the fistula actually retreat and heal was a lengthy water fast followed by staying away from an inflammatory producing diet while realizing that I had been habitually holding in my BMs all through my childhood and teen years. Not going when I had the urge to go became a habit and I diagnosed that as the root of my particular fistula. Pressure buildup in the colon created a fistula as an escape route.

I realize this is not a particular cause of your fistula but only that a fistula is very difficult to heal unless you rest the area sufficiently so the body can reverse the damage. Fasting does this quite well. I've undertaken a few lengthy supervised fasts (2 and 3 weeks) back in the 80s that made the fistula shrivel and go away and when I refed I have always made sure to always honor the urge to go have BMs. Take care of business!

I have been a Natural Hygienist since that time but not the 100% raw food variety. Cooked starches were always mainstay at times for me so I've been at this for a long time.

If you can afford to go to True North Health in Santa Rosa I would urge you to take that route or someplace that can safely guide you. You really need to rest that area for total healing.

Good luck, all the best.

[Sagefemme]

I second the suggestion to go to True North and do a supervised water fast. Surely resting your gut will help it heal. I bet you could speak with someone there about your situation and hear what they have to say about chances of a cure with their methods. I suppose one situation that might make water fasting not recommended for you is if you are already very thin.

This whole scenario sounds so difficult and painful, you have already been through a lot. Your desire to avoid these drugs makes tons of sense to me. Crohn's and UC can become truly life-threatening, and even when your life isn't in danger they can cause so much misery. Talk to True North!!

[danmc]

Thanks for the comments, unfortunately I'm on the east coast and a trip to California at this point isn't really in the cards, although I will look them up online to investigate.

I had gone back to the CRS office a week ago today because I was concerned with the pain in my butt, which is a pain in my butt , and had an exam and they didn't see anything new or anything to indicate there was an immediate issue that needed treatment.

And I'm already concerned about my losing weight (I'm 6'4" and currently running between 165-170 lbs) so not sure if a water fast would be prudent. It's hard enough to find clothes, stores don't have an "Ichabod Crane" department!

[figlover]

Well, another route that is similar to a water fast in one respect, is a juice fast, which is not really a fast in the truest sense but allows for nutritive assistance (keeps your weight up) while minimizing peristalsis. And that peristaltic action is what keeps the fistula from healing, akin to rubbing a sore on your skin. And the bacteria that may be involved in the inflammation process is minimized.

While juicing is not regarded as the best way to approach normal nutritive needs, in the case of inflamed gut issues it is probably the best therapeutic modality next to fasting for quick recovery, IMHO.

I am not a doctor but sometimes play one on the internet. Talk to True North doctors for some advice if nothing else.

[Cora]

I searched and can't find it anymore but a couple of days ago I read an older post about a woman who did a 5-day water fast and claimed that cured her Crohn's. She followed that with Dr. McDougall's diet to maintain her healing.

[Sagefemme]

Hmmm, somehow I knew you were going to be a skinny guy. I still think an experiment could be done, 3-5 day water fast under your own supervision, and see if you improve some, in terms of pain. If there is improvement you'll know you're on the right track. If you read about Natural Hygiene you can do it on your own. NOTHING coming through that area for a few days, plus sitzbaths, I picture helping. But then again, I'm not a butt doctor!! I do feel your pain though, anything like this going on in that area has got to hurt like !#*@%^ !!

[danmc]

Hmmm, somehow I knew you were going to be a skinny guy. I still think an experiment could be done, 3-5 day water fast under your own supervision, and see if you improve some, in terms of pain. If there is improvement you'll know you're on the right track. If you read about Natural Hygiene you can do it on your own. NOTHING coming through that area for a few days, plus sitzbaths, I picture helping. But then again, I'm not a butt doctor!! I do feel your pain though, anything like this going on in that area has got to hurt like !#*@%^ !!

Yes, that is an alternative. Over a long weekend. As long as I don't keel over, and my cats start feeding on my corpse.

I'm not a butt doctor either, and I don't play one on TV!

[Sagefemme]

All kidding aside, hang in there. This has got to be rough.

BTW I was an undergraduate at U of R, my husband too. A million years ago.

[patty]

Intermitten fasting might also be a option. At the same time the choice of foods could be anti-inflammatory. What I have found with intermittent fasting is the 19 hours for digestion is a wonderful benefit. And eating within a 5 hour window, I am not focusing so much on food. Time works for you. As Dr. McDougall say's "It's the food!" And the body is always trying to heal it's self.

Aloha, patty wishing you the best!