Old Diagnosis, New Issues

[MoreInfoIsBetter]

Hi. I'm glad I found this forum.

I started having serious stomach issues in 2000 immediately after returning to the US from a vacation in Japan. Literally, the day I stepped off the plane my problems began. I have no idea if this is just coincidence, or if there is a relationship, and no doctor has ever drawn a link, but I've always wondered about it.

It took two years and many visits with doctors (including one GI who did a colonoscopy) before I met my current GI in 2002 who diagnosed me with mild Crohn's Disease. I was on Asacol from about 2002 to 2004 and felt well. In 2004 I stopped the Asacol and referred to my disease as being "in remission". I had the occasional bout of diarrhea and blood in the stool, but I was usually able to link it back to eating high-fat foods, and when I went back to eating well it went away. I really didn't do all that much to manage the disease.

That changed in December 2012. I got myself to the ER with severe stomach pain and was diagnosed with a complete blockage of the small bowel. I was admitted for 4 days during which they evacuated the contents of my stomach and put me on a short course of Prednesone.

Since getting out of the hospital I've been feeling well. My doctor has me eating a low residue / low fiber diet, and I'm back on Asacol. That's been about 5 weeks. I'm feeling well and except for the fact that small amounts of food make me feel very full (so I eat small meals fairly often) everything seems to be OK.

Here's is the part where I'm hoping to get help from all of you.

The most significant change that I can identify between the time before the ER visit and the time afterward is my consumption of refined sugar. I gave up sugar sometime around 1993 (9 years before my diagnosis) for reasons completely unrelated to Crohns. I just didn't like how it made me feel so I took it out of my diet. Essentially anything with refined sugar added I avoided (i.e. cake, cookies, candy, etc.). I still got plenty of natural sugar from fruit, honey, etc. Just about 5 months before my ER visit I fell off the wagon in a big way. I started slowly and was eating progressively more sugary foods up to the date of the problem. Now I'm back on the wagon, but I am wondering if the sugary foods could be the only major issue and if I went back to eating like I had been (not low residue / low fiber) and just stayed away from the sugar if I'd be in good shape.

I still don't know if the recent experience was simply a short-term flareup or a progression of the disease that needs to be managed differently going forward.

Also, I'm ready to start adding foods back into my diet to see how they affect me, but I'm really kind of scared that I could find myself with another blockage. Are there any warning signs that can predict a blockage, and is there any way to prevent it once it begins, other than an ER visit?

Thanks for listening, and I look forward to getting to know some of you through the forum.

 

[afidz]

"Dietary implications are hardly considered in most standard medical and gastroenterology texts, but several lines of evidence support dietary factors as being the most important causative factor of IBD. One major statistic is that Crohn's disease is increasing in countries where a Western diet (diet high in refined carbohydrates, sugar, and saturated fats) is consumed, but is virtually nonexistent where people consume a more "primitive" diet (high in raw foods and fiber)" http://www.healingwithnutrition.com/idisease/inflambowel/crohns.html

Were you eating anything with refined sugar when you were in Japan? It could of been something else in their food such as a spice that initially irritated your bowel as well.
I have never had an obstruction so I am not to sure on what an oncoming obstruction feels like, how to prevent it, or how to correct it on your own, but I would bring this up with your GI when you see him next.

Have you had a decreased appetite since you were diagnosed or is this new? I am not sure if that would have anything to do with your small intestines becoming obstructed, but I think that is also something to discuss with your GI, especially if it is a relatively new symptom.

 

[Susan2]

Consuming suger for that short amount of time is very unlikely to have caused a "complete blockage of the small bowel". That would most likely have been building up for some time.

You say "I stopped the Asacol". Did you do this on the advice of your GI?

 

[MoreInfoIsBetter]

Thank you both for the replies.

@Afidz, The decreased appetite is new since the obstruction. It could be partly that I'm afraid of filling up my stomach again because the pain of the obstruction was so severe, or it's just that my stomach shrank due to going four days without solid food, then very small meals afterward. Either way, that's not really my biggest concern as long as I can maintain my weight, which I seem to be doing successfully at this point.

@Suzan2, When I stopped the Asacol it was in consultation with my GI doctor, and it seems to have been the right thing since I had few, if any, symptoms for the next 8 years or so. Now I'm wondering if I'm back in remission and can call that an isolated flare-up, or if I have active disease that needs to be managed. I feel well, my bowel movements are normal, but I'm currently on a low residue / low fiber diet. I think I need to begin introducing some other foods in and see how that goes.

Thinking back on the events of the past eight months or so, there were warning signs that the Crohn's was becoming active again though I didn't recognize them and therefore didn't treat them. Hindsight is always 20/20. Your comment ""That would most likely ahve been building up for some time" suggests that a blockage is not something that happens suddenly and that there are warning signs and that it can be addressed without an emergency visit to a hospital. Is that right? My greatest fear is that I'll eat something that will cause my small bowel to inflame and close up without any warning. I'd love to know that this is an unrealistic fear.

Thanks again.

 

[afidz]

I don't think it is an unrealistic fear at all, when we go through something traumatic that we now can happen again, I think its only human to be afraid, or try to do anything in your power to stop it.
An obstruction or blockage usually occurs when the is a lot of inflammation in your intestines causing a stricture, or if there is a lot of scar tissue built up narrowing the passage through your intestines. A lot of times Crohn's is flaring silently and causing a lot of damage that we are unaware of until we find ourselves in the emergency room. Thats why it is usually a good idea to be on some type of maintenance medication and see a doctor regularly to detect a flare early on.

 

[tots]

After being unmedicated for 8 years I will forever be proactive as far as treatment goes.

I needed to remember the name of the game is keeping it in control. At this point
they are not going to cure it. When I manage to get back into remission it will be the medication that got me there and hopefully keep me there.

I don't know if I am right or wrong but, by being untreated we run the risk of the disease
advancing before we are even aware of it. Does that sound right?

Lauren

 

[afidz]

Tots,
I have heard the same thing, that it can do damage silently. I am unmedicated at the moment because I have a large surgery coming up, but once I am out of the woods with the surgery I will be going on maintenance drugs because I am terrified about the damage that has been done or can be done by staying off my meds

 

[mickey]

sorry to hear what you went through....yes, sugar can cause constipation..as far as blockage..who knows with our bodies? I could have two bakery cookies and find myself binded for days. I recently discovered the teas I were drinking (herbal only) were also binding me, so back to the drawing board...no Banana, no rice, no apples, no tea for me....waah....I do see a difference around the holidays,, when we tend to cheat, and then stomach issues...bloating, etc...sugar is not truly good for our health. Read up on sugar and you will be stronger about staying away from it. Good luck!