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New To Disease - My Story

Hello fine folks,

I am 32 and recently diagnosis with Crohn's. Actually, doc has used both Crohn's and UC to describe it, but it seems that there's enough overlap for experienced CD cases to be helpful. Here's my story and question... strap in:

I got a case of diarrhea at the beginning of October that lasted about 10 days before I got myself into a Dr.'s office. It was watery, and on one occasion, there was a tinge of blood. No nausea, no abdominal pain, only going to the bathroom, 3-4 times a day. He gave me a scrip for Xifaxan and my symptoms immediately got worse, routinely bloody stools, more diarrhea, and some abdominal pain, especially at night/in bed. My wife said my stomach was really loud while I was asleep. I went in for a colonoscopy 10 days later, and I actually scrapped the Xifaxan after 5-6 days (maybe a bad move, but I was/am new to this.)

Colonoscopy revealed inflammation and moderate active Crohn's. Immediately went on Lialda and symptoms went away within 36 hours. No more sound of grinding machinery coming from inside my body, no more diarrhea, just 2-3 BMs in the morning and I was fine.

Eight days ago (after almost exactly a month of 'remission'), I was at a bar waiting to meet a friend and noticed my stomach/colon(?) making those same loud, occasional wince-inducing, industrial machine noises. I tried to brush it off as nothing, but then the next day, the diarrhea came back. Within 24 hours there was blood in my stool, mild abdominal pain, and the urge to go constantly.

My Dr. put me on Xifaxan again (this time I'm seeing it out to the end) to go with the Lialda, in case it was a bug in my system. That was 6 days ago. Since then--yesterday, in fact--I have been in to see my Dr., and he laid out some rather unsettling options. I was/am having a flare, and it was likely an indication that the Lialda wasn't enough. If my body didn't respond to the Xifaxan, I would need to go on a steroid for a finite period, as a 'bridge' to an immune suppressant. He laid out the possible side effects, and even before he did, I was/am very reticent to lower my immune system.

In the last 48 hours the Xifaxan has started to help. I feel better, and I'm not on the toilet as often. However, I've still noticed blood in my stool (darker today, but in the past bright red) and slight abdominal pain and diarrhea.

If anti-inflammatories and antibiotics don't work, do I have any choice in the matter? Or is immunosuppressant the only option? Does anybody out there have a similar story? This whole thing has been rather troubling, and as someone who generally has a really positive outlook, this last week has been nothing but a continuous kick in the face.

-Brad
 

Angrybird

Moderator
Location
Hertfordshire
Hello Brad and welcome to the forum :)

It does sound like your treatment plan is heading the way it does for most with a dose of steroids whilst the maintainence med gets introduced and kicks in, I can certainly understand you reticence though. The only other thing I could think of that you might want to look into is the diet side of things with enteral nutrition, this can be tough as it means you don't have any food at all for while but it can really help with settling the tum down and has been known to induce remission. This can also help you notice what foods give you problems once they start being re-introduced. It may depend on how active and angry things are inside on how effective it could be for you. Out of interest do you know which immunosuppressant the doc is thinking of putting you on?

AB
xx
 
He says that 6MP is the drug I would go on if I choose to go down that path.

I have always monitored my diet my whole life, and I am even more so now since my diagnosis. I have not noticed a difference in symptoms with any foods varying from rice and pasta, fruits and vegetables, proteins, anything...

The condition doesn't really cause me a problem during day-to-day activities--once I've gone to the bathroom a few times in the morning, it's out-of-sight-out-of-mind for the rest of the day until I go to sleep. I guess what I'm wondering is, if my symptoms don't seem to be severe or cause me great discomfort, can I survive without an immunosuppressant? Has anybody else tried such a strategy and had success?
 

Angrybird

Moderator
Location
Hertfordshire
The problem with this disease is that it isn't always giving you loads of problems but things inside are bubbbling away. If the current meds do not work I would definetly say you need to be on treatment of some sort, even the 6-mp, as the last thing you want is for things to get worse and worse until your then in big trouble. I don't personally know of others who have done well with having active disease and not going on meds that can potentially sort this.
 
Hi Brad,

Welcome to the forum:)

I understand your concern about taking these drugs like 6MP. However, it is true that the "top down" approach is better, than the "bottom up approach". Meaning it is best to hit the disease hard from the get go. Research has shown that we can achieve more long term remission rates like this.

I personally feel that in the long run, it is highly unlikely that your current meds are going to see you thru, and you will eventually have to consider other treatment options like 6MP, Remicade or LDN. So why wait until you have suffered permanent damage to your insides before taking the next step.

6MP has been around for a very long time, and been taken for many years without any complications.

Anti-TNF's like Remicade are a godsend to many and can put you and keep you in remission for many years.

LDN is taken in such low doses for Crohns that it has hardly any ill effect at all. To some people it can put you in long term remission, whilst there are others that for some reason do not respond. I personally feel that there is more than one illness that they put under the "umbrella" of IBD, and that is why one treatment option will work for one and not the other.

Good to hear you are eating healthy. Try to stay away from any "hard" foods like popcorn (never eat popcorn!) or under cooked veggies, nuts etc. Meats are the hardest and longest for us to digest, so opt for fish and chicken more often.

Let us know if you have any questions, or if you need any more information or patient experience!
 
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