Another new guy.....

[imation]

Hi All.

I've been reading the forum for a few days now ... finally decided to register and post. I was diagnosed just recently. Very minor symptoms .... I won't get into details on those ... no weakness, no loss of weight, no frequent trips to the bathroom.

So anyway ... I might just be one of the lucky ones who caught it early.

Anyway .... talked to the doc and he's not recommending I do anything at this point. Because my symptoms are so mild and appear to be in "remission" at the moment .... he wants me to keep in touch and let him know how I'm feeling.

Seems reasonable enough ... although I was naively hoping for some pills or something that I could pop if things go awry. I guess it doesn't work that way. He explained that once you're on medication, "you kind of have to stay on it."

Now I've done just a little bit of research and found that it's true .... certain medications lose their effectiveness as our body builds up immunities.

So my question is this .... is that true with all medications? Is there anything that 1. would be ideal for someone who (at least for the time being) has a mild case of crohn's, and 2. something that wouldn't require me to take it for the long term? (in other words, something that I could take a break from when things are back to normal)

Thanks all for your suggestions. From the looks of it, there are a lot of experts here.

thanks,
-matt

 

[Kev]

hi matt, welcome to the forum. Here's my thoughts on your situation, and I speak only for myself (but I think others on here will echo my sentiments) BUT, if it was me

I WOULD GIVE ANYTHING TO BE ABLE TO GO BACK IN TIME AND AVOID DOING THE "THING" (WHATEVER IT MAY HAVE BEEN) THAT TRANSITIONED ME OUT OF REMISSION AND INTO ACTIVE IBD. It may have been something as innocous as quitting smoking

So, if your doc says you are in remission, my advice is you don't do anything to rock the boat. You don't want to trigger one of the infamous slides/flares of IBD.
Watch what you eat, get plenty of rest, exercise, etc., but don't go experimenting.

Just my two cents worth, ok? I've seen my disease take off without warning for no apparent reason, and putting the brakes on it after the fact is pretty hit or miss

 

[D Bergy]

I would agree 100% with Kev on that statement. It is a tough chore to get this thing back in its cage. Excessive coffee and stress and maybe onions brought mine to a head after 44 years of ignorance of my disease. My last meal before getting my very first episode came after eating a blooming onion. Maybe a coincidence, maybe not.

I am really surprised you got diagnosed before any major problems. Kudos to your doctor. It quite often does not work that way.

Did you really flare when you quit smoking Kev? I was thinking of doing this again but I do not want to make things worse either. I did quit in the middle of my original symptoms and it made it slightly more painful but I really do not know if it affected it in any other way.

Best Regards

D Bergy

 

[Kev]

Hey Dan (not to hijack Matt's thread.. BTW Matt, you used imation as your nickname, you wouldn't happen to be in a computer related field by any chance?)

OK, back to my reason for jumpin back in.. Here's my smoking scenario in nutshell. I stopped smoking in Oct of 91 after having been a moderate to heavy smoker for soo many years... within 4 months, I developed what in hindsight now was my very first outbreak of IBD. bleeding, cramping, diarhea, all of it confined to the lower colon. It was never accurately diagnosed at the time, and the treatment I took was steroidal enemas... over a period of 45 days. All symptoms vanished.
Fast forward to Dec 2001. Had a ruff yr. My dad died, best friend was killed in a car accident, 2nd cousin same thing. I became ill on the anniversary of my dad's illness (he died from pancreatitic cancer - not pretty). My symptoms mirrored his. My GP took it very seriously (his dad also died from pancreatic cancer). Early tests showed my pancreas was not up to par.. X-rays followed, nothing showed up. At an ultra sound, something did, but they couldn't tell what it was.. I was slated for an MRI/CT, but the waiting list was long, and I continued to decline, following the exact same route and symptoms that took my dad (it took them months to dx his problem - literally up to the time he died - and there was a lot of false hope during this period).. Long story short, I thought (and some doctors agreed with me) that I may have had pancreatic cancer. So, after nearly 10 yrs without smoking, stupid me started again. finally CT proved I had pancreatitis, but no evidence of stones. Shortly after starting to smoke, the pancreatitis went away, with no treatment. so there I was, missed a bullet (so I thought), but was hooked on tobacco AGAIN. If we fast forward again to Oct of 2004, I decided to quit smoking for the last time. I was off them for 4 months when I started going downhill again. First, pancreatitis, then colitis, then pancreatitic cysts, etc., etc.. Bleeding was off the charts, I ended up being rushed to ER, spent a week in GI ward, not making any progress, WHEN some of the more experienced patients told me to start smoking. Within 2 days my blood loss slowed to a trickle.. Now, I've heard the following from several of the doctors I have dealt with, even though they were loath to admit it.. but for some folks, tobacco was the treatment of choice in the old days for colitis, even some forms of crohns. It stops the bleeding. Now, if you have crohns in other places, or if bleeding isn't your big issue, smoking interferes with many of the common medications given to treat it.. so for many, smoking makes it worse, for others.. IT may reduce bleeding. It reduced it for me, but it hasn't stopped the disease... I continue to decline, but I haven't had the continuous blood loss that I suffered from 2 yrs ago... and considering the extent of the colon inflamation now, that's a good thing. mind you, if I can get stable, my GI and I are going to try to get me slowly weaned off of cigarettes, even if we have to resort to drug therapy.

So, I don't advocate smoking to cure IBD. It doesn't, otherwise considering what I smoke a day, I would be cured. Smoking does constrict blood circulation, it seems to slow/curb colitis ... it interferes with the meds CD patients take, but not UC or CC,, (why I dunno... except maybe it only works in the colon - that's just a guess)
AND smoking is a killer... But, if you are a smoker, and think maybe you also have the beginnings of some form of IBD, I personally wouldn't advise you to quit. see a doctor, esp a GI, find out if you have IBD, and what form it is, then get them to be totally honest (telling a patient not to quit is so politically inccorrect these days) re the whole smoking & UC, CC or CD thing. Then decide what you are going to do.

 

[D Bergy]

Well Matt, you never know what you will learn here. Sorry to interrupt your thread but I hope it answers some questions. Maybe you can get along just fine by avoiding stress and maybe some of the more suspicious foods that seem to bother many people.

If you are feeling well most of the time just enjoy it. Do not obsess over Crohn's.
That will not help out any. Although I am kind of obsessed with it myself. Maybe I should take my own advice.

Good Luck

D Bergy

 

[Cog]

Imation welcome

I would also take a good multi-vitamin may be consider a probiotic (Garden of life brand works for me.)

Good luck

 

[soupdragon69]

Hi Matt,

Good to see you here! Glad you went to the doc early and sorted things out. The others are right about eating properly - not lots of high fat for instance - , resting well and keeping stress to a minimum where possible. Stress doesnt cause IBD but it does contribute to it getting worse if you flare.

I was diagnosed Dec 06 and the folks here have been great.

Keep posting and asking and we will help were we can.

Welcome

 

[imation]

Thanks, all, for the feedback. I suppose my symptoms are a little atypical for Crohn's ... no running to the bathroom for me. Quite the opposite, actually. I had also noticed what I would describe as a "sensation" in my gut ... mostly on the right side (my right) of my traverse colon ... a few inches to the side of my belly button. Never anything that could qualify as "pain", but more just a feeling. Then I noticed a small amount of bleeding and had instantly convinced myself that I had colon cancer.

Over-reaction or not, at that point I was determined to have a colonoscopy done. Had an appointment with my doc that Friday, colonoscopy the follow Tuesday. Excellent.

Fortunately, he did not find any polyps or anything of major concern (might be relevant to mention that I'm 26). However, he did find a few area's of slight inflamation. Biopsy was done and 2 days later the report shows that I had Crohn's. Or rather, I believe the report referred to the areas of inflammation and used the words "indicative of Crohn's." (although my atypical symptoms sometimes have me wondering......)

I was releaved ... as I suppose anyone would be if they were worrying specifically about cancer. An uncle of mine has Crohn's (i found out about this after the fact) ... there was one point where he had lost a lot of weight and wasn't feeling well (before he was diagnosed) ... but has gone for some 30 odd years since then and has been fine. I'm hoping I'll be that lucky.

Thanks guys for your advice. This forum is an excellent resource.

 

[killerzoey]

Hi Imation

Welcome and congratulations on being proactive and finding out what your symptoms mean.

I could have written your post, except that in addition to that odd right-sided sensation I had extreme hunger, which was determined to be gastritis by scope-possibly another Cronn's thing. Colonoscopy just showed areas of inflammation which were biopsied and shown to be just that - areas of inflammation. Then the Promethius blood test predicted Crohn's.

Did you have the bloodwork done?

For what it's worth I am now on the Specific Carbohydrate Diet, trying to minimize chances of future flares. Also trying to do my best to heal my gut. you seem the type that might be interested in learning more so here's a good place to start:

www.breakingtheviciouscycle.info

also see:

www.pecanbread.com


Best of luck to you.

 

[Cara Fusinato]

Hi Matt -- you sound a lot like me. Very mild symptoms except just a twinge or sensation on the right side, no major bathroom needs.

I take a nutritional supplement that helps keeps the intestines calmed. It's worked for a year and a half now and I still have all my guts, so I think I am doing well.

It's called Xango (brand name) mangosteen juice. It has anti-inflammatory, anti-bacterial/fungal, and immune modulating properties and seems to work exceptionally on the GI system. I chose this brand because it is much more concentrated than the others and uses the rind which none of the others do. You can find tons of research on the net and even a local person you can call and talk to about it. One only needs about a shotglass a day. It only costs me about $40 a month and I can directly correlate it to improvement. But that's just me.

Feel free to research it and talk to people. It has worked for ME just soothing the area.

 

[Mazen]

Hi. Well I started like you, but things seem to progress with this disease. As you are in remission, as Kev said, don't change anything you're doing. Also try to stay on some kind of maintenance med ( the mildest ones are the 5 ASA like Pentasa, Asacol.....)

Keep stress to a minimum and watch your diet and maybe take a multivit and fish oil.