Hello All

[Beeracuda]

I've been dealing with my problem for 17 years or so. I finally decided to get it checked out the other day (Barium CT Scan). My doctor has informed me that I have IBD, probably Crohn's. I will be going to see a specialist on the March 27th.

According to the analysis of the scan, I have "mural thickening of the 3rd and 4th stage of the duodenum, mural thickening of the ileum, and mural thickening of the cecum and ascending colon." Basically half of the duodenum, the lower section of the small intestine, and the beginning section of the large intestine.

My symptoms for the past 17 years have not included a lot of pain thankfully. It's mostly been diarrhea. Over the past few years, it's been practically CONSTANT diarrhea. If I'm lucky, I might get one or two days out of a year with a normal BM. It's been hectic. I find myself pacing myself with meals so I don't get caught away from home or too far from a bathroom when I have to make a run for it. The worst is when I'm stuck in traffic and feel that I'm about to lose control.

It's also ruined my social life, as I have no desire to go out on the weekends anymore. I never want to stray too far from home.

Perhaps someone can give me some advice? I mean, since I haven't been OFFICIAL declared a Crohn's sufferer (until I have a colonoscopy), I can only assume that constant diarrhea is a symptom?

Also, until I go through the tests, can someone advise me on some over the counter medications, and/or foods that may help?

Thanks!

Bruce

 

[D Bergy]

Welcome to the forum. I am sorry that you are here, but since you are we will do what we can to help.

Until you have a diagnosis, you are somewhat limited to what you can do. Most medications for this are by prescription.

You can try using probiotics as they cannot cause any harm. Some people get some help from them, others do not.

Milk is a pretty much a universal offender, you should avoid it for now. It also is suspected of harboring the MAP bacteria, which may or may not be related to Crohn's symptoms. Nothing has been proven beyond a doubt yet.

Gluten intolerance is a problem for some people, but it is hard to avoid it since it is in almost everything.

I have a great intolerance to onions, but we all seem to have individual things that make us worse. Nuts or any other fibrous or abrasive in texture food should be avoided. Coffee and soda are generally not going to help anything.

I am sure some others will have more suggestions, but that is about all I can think of off hand.

Dan

 

[BWS1982]

I know what you mean by the ruining of a social life, I have to be as few feet from a toilet as possible, and even then it's often not close enough. Nevermind even the fact that it's affecting work too, since I'm a good 30 seconds from the toilet.....things will work out for you in the next couple weeks I imagine, you have a full diagnosis coming and there will be treatment following that....hang in there.

For foods, what D Bergy said above is a good starting point but like he says it's different for each patient, trial and error is sadly the most effective method of determining what will agree and what won't...but there are some basics that tend to be consistent like the dairy and rough/fiberous foods being bad.

As far as supplements I'd add that some Omega 3 fish oil (or flax if you want) capsules are great for health in general...

 

[Kev]

Hi, welcome to the forum. Some things you can do while waiting for an 'official' diagnosis that won't hurt you IF it turns out you dont' have Crohns is to keep a daily diary... track everything you consume, no matter how innocent/innocous it might appear... then see how your body reacts in the next day or two. This way you can backtrack, look for patterns, triggers, etc. Doesn't hurt to note symptoms too.. Pain levels, stool quality/frequency, energy levels, fevers, etc..
Your 'version' of this disease can be similar in many aspects to every/any one elses... but there are minor/major differences .. You MIGHT be sensitive to a 'common' thing... Frinstance, I'm sensitive to lactose... and it's in everything. Margarine, orange juice, brand name vitamins, even prescription medications.
And, what's a 'smart' diet for regular folks isn't so good for someone with IBD.
Hi fibre MAY be good for people with a healthy GI tract, it might make your IBD symptoms worse... and manufacturers are putting fibre into everything too.
Anyway, welcome to the forum and to the fun, fabulous world of IBD too (maybe).. It's a whole new learning experience, but it can be fun as well. As for social life, think with diagnosis N treatment, 'IBD' can be controlled, and if you control it Vs it controlling you, you can regain your social life.. a good thing.

 

[Beeracuda]

Thanks to all for the warm welcomes. I go for my complete set of tests on April 30th. In the meantime, my doctor has given me a prescription for Pentasa 500 mg. Also, he's put me on 2 sets of anti-biotics: Cipro and Flagyl. Additionally, he's given me an Rx for steroids (Medrol). However, before I get the Pentasa prescription filled, he wants to see how I react to Asacol, so he's given me 4 bottles of freebies.

I don't plan to start any of these drugs until after work on Friday, so in case I have a bad reaction to them, I'll be at home and not at work.

Has anyone tried these medications? If so, have you had any bad side effects, or have they worked right away? Particularly interested in Asacol and Pentasa.

Thanks again for all your help!

 

[elp888]

pentasa

Until 2 weeks ago i took Pentasa (2x or 3x 1000mg) for 14 years and never had any side effects. Right now my Crohn's is not good, but after my resection surgery Pentasa kept me going with hardly any trouble.
Now, the doctors have taken me off the Pentasa because they feel it is less effective for Crohns than Ulcerative Colitis.

Good luck with everything!
e.

 

[Creepy Lurker]

Now, the doctors have taken me off the Pentasa because they feel it is less effective for Crohns than Ulcerative Colitis.

This is interesting.

I know a few people with Crohn's, and not one of us benefited from Pentasa. I assumed it was coincidence, but I always had the thought that it was pretty useless stuff.

 

[Kev]

Someone just posted on another thread that their GI told them that AZA provides a 2 1/2 to 5 times better chance of maintaining remission than 5 ASA (Pentasa). I know that most folks haven't had a "eureka, I'm cured" from taking it, but if you consider it's just a stronger, buffered aspirin, I wouldn't expect a 'eureka' either. I am hoping that I will be able to wean off 5ASA (been taking it for years without a eureka)... but it is a 'proven' anti inflammatorie with little or no 'big' side effects (for many)... So I'm guessing (and only guessing) most drs figure it's no harm, and it just might help scenario... and thus a std practice.

 

[michels1]

Hi, I am new to the forum also, but a long time sufferer. Good luck with your tests. I have been on Asacol (Pentasa) for several years and it has been a good drug. Flagyl can definitely have some bad effects. For me it totally hypersensitized my smell and taste. Everything tasted horrible and smelled the same way. I hope everything works out well for you. Dede

 

[BWS1982]

regarding what Bergy said above, at least based on what something my GI only recently said...probiotics found in yogurt are one thing, and they're fine, but seperately (as a supplement) taking them, WHILE on immunosuppressors=not a good idea...he says it can mess the balance up down in the intestines (the supp's can)....

and 5ASA I've read is often better for UC than Crohns...when I was hospitalized 2.5 months ago, they took me off it saying it was making me WORSE, due to the extra fluids it made my small intestines secrete. Well that's a good side affect for chronic diarrhea. :ymad:

 

[Guest]

hi & welcome bruce

well done on finally pushing to get a diagnosis.. it'll be a lot easier for all concerned once you know exactly whats causing your symptoms.

re advice, i think everyone who's answered in here has covered most of the things i would say. diet-wise, i'd stick to gentle foods, which are easy to digest, and keep away from anything raw, spicy, acidic, fried. basics like fish, chicken, eggs, potatoes, bread, soups.. are a good staple diet to start off on. and the diary is a great idea, really helpful in identifying what agrees or doesnt agree with you. keep an eye on your hydration as you're having such a lot of diarrhea, maybe talk to your nurse or doctor about this.. you can get rehydration preparations both on prescription and over the counter - they really help give you some strength back and stop the weakness feeling from losing so much fluid.

i know exactly what you mean about not wanting to leave the safety of being near the toilet, and how it can ruin your social life. i had to give up work last year because of that (and the tiredness), and i'm still fed up about losing my job in that way.

i've not really had much experience with those meds.. but see how it goes, and maybe add a meds section to your diary so you can monitor any reactions, good or bad.

good luck!

 

[Beeracuda]

etc

Thanks again for all your help, everyone.

I finally got all my tests done, colonoscopy and endoscopy. My GI did not find a lot wrong, other than inflammation. He did say that what he saw looked more like colitis, rather than Crohn's. The biopsy came back, and according to him, he saw some minor disease, but other than that, everything looked pretty good. (By the way, the reason I'm sounding rather vague is because I haven't actually talked to him yet, but rather paraphrasing the message he left on my voice mail).

Anyway, he's put me on a 28 day regimen of Prednisone 10 mg. 4 tablets per day for 7 days, decreasing by 1 tablet per week. Can anyone tell me if there are any bad side-effects from this drug, or what else to expect, if anything, while taking Pred?

Thank you very much.

 

[Guest]

hi again bruce. glad to hear the results didnt sound too bad

i'm on pred, but in suppository form, so i'm probably the least informed user of the drug here regarding side effects/good effects when taken orally. but i have to say - i'm extremely drug-sensitive, and havent had any bad effects from the pred whatsoever, and it does calm things down a little for me.

good luck with it all - i hope the meds and maybe a changed diet are all that you need to get your life back on track

 

[BWS1982]

Pred...um, yeah, (1, 2, 3, what is truly bothering me.......1, 2, 3, what is truly bothering me.........Goooooooooze Fraaabaaaaah.........1,2, 3, what............)

first couple weeks, not so much of the sides present themselves, just the minor ones, such as the manic mind altering transformation and sleeplessness.....after a while though, if you stay on it for a bit, the bad ones start up, like racing heart, hair loss, major acne all over, milia, stiff joints, mood issues, moon face, wacky appetite, excessive sweating, the list goes on.

This is just my recent bout with Prednisone though, my first one I didn't take it long enough to reveal its demons, was only on it for like 6 weeks in 2006, and that went fine. Many here have had very little bad to say about it, it seems it's a case by case drug...

Also, the suppository ones Dingbat is on are not nearly as severe due to direct application of the compound, orally much more gets in your bloodstream (provided it doesn't shoot through you if your diarrhea is so bad)

 

[Kev]

Think a lot of folks develop a 'love/hate' relationship with pred.. love at first light, as in many... well, at least once you hit the right dosage for a given situation, the drug can feel like a miracle cure... made me feel .. wellll, not exactly like superman... but like I was normal again, or even cured. Then, side effects do tend to creep in ... some minor, some nasty. uusally tho, most are tolerable, even overlookable (couldn't recall how to spell neglible).. Then, most docs will take you off it... cause the long term implications are really pretty bad.
The journey off this drug isn't fun... you can look forward to withdrawal issues that can often be mistaken for flares... or you can flare... sometimes severely.
That's when you realize the euphoria about feeling like you were cured, even just normal again.. that it is only a passing thing.. irrespective of how long it lasts or doesn't. Reality is that pred is usually just a short term solution, way of grabbing a rest from the disease, some breathing space. not a cure at all!!
That's a difficult realization for most of us.. coming to terms with this disease maybe NOT going away, or going into permanent remission. I don't mean to rain on you, or your doctor, or any joint optimism. There is a chance pred will put you into long term remission. I had one that lasted nearly a decade... But it doesn't appear to be the most prevalent outcome of those I've seen posted on the forum... and it didn't happen to me in the past 3+ years of having my IBD. I have been on it as long as 11 months out of 12. Ups, downs, withdrawal, even flares... been there, done that. Derive as much benefit, physically, emotionally, whatever,, as you can while on it. Keep your fingers crossed. All the best, OK?

 

[BWS1982]

I never had any "love" portion to the pred. I never saw enough of an improvement to chalk it up to love. It was more hate/hate-more for me. But again, many people love it as their Crohns just reacted the right way to be put in its place and "hibernate".