Long time IBS - now to test for IBD - help? Are meds the only solution besides surgery if it is IBD?

Presently nervous.

Have had IBS for almost 20 years - diagnosed by regular g.p. I've dealt with it pretty well over this time, learning LOTS of things that help and hurt my condition. I do pretty well with it considering everything.

However, I saw a gastro-doc a week ago who wants me to do those usual day surgery type tests - those scopes that check internally from the bottom up - and from the throat down as well.

I'm pretty darned scared. I'm allergic to more medications and things than you could believe. All pain meds (all opiates and nsaids) except for tylenol are off limits due to my allergies etc. Many antibiotics are off limits. Even the drugs I'm not allergic to tend me make me react very badly.

I have a lot of other health issues - fibromyalgia, degenerative disc, arthritis, on and on. I do get weird canker sores in the top of my mouth from time to time - and I'm afraid that indicates IBD or Celiacs. (Although they did a blood test for celiacs for me some years ago and it was negative.) When my IBS flares on A FEW occasions it has made all my joints hurt and I'll spring a low fever. (This is more in the past than present.) However, I do get mucus fairly often. Just today I'm having a bad tummy flare and one run to the bathroom yielded only mucus that was yellow and nothing else. All other b.m.s had no mucus today.

Most days I don't have flares of my bowel problems anymore. I thought I had it fairly controlled. Today however is a very bad day.

The only time I ever saw blood was 3 years ago. I had to go to the ER for fever of 102, dehydration, loads of diarrhea, and passing several urgent feeling blobs of red gel. (like red mucus). My g.p. after that said she could see an internal hemmorhoid - which she assumed caused that. We didn't investigate further at that time. But now the gastro doc is fairly up in arms about that past history. :-(

If I end up being diagnosed with IBD of some sort - do I have to take any of those meds I've read so much about? I REALLY doubt my body will handle those at all. Is there some other way to treat this - without meds- and without surgery? I've had whatever it is for 20 years already. I pray that it is only IBS and not IBD - but I'm preparing for the worst.

Help?
(I'm usually quite reasonable and reach out to help others but this has me shaken up today with my bowel flare up. I have a VERY important event coming up in 1 week- lasting 2 weeks - and I wanted to put off the scope thing until July - but now I don't know what to do. Sorry if I'm rambling. I'm nervous.)

PS: I forgot to add, I've also been diagnosed recently with blepharitis (inflammation of the eyelids) which they think is related to my possible rosacea (also new diagnosis but long time condition I've had), plus some other skin things. I've read this is common in some forms of IBD - so I'm doubly scared now I'll end up with IBD.

Post Edited (chipper-gal) : 4/27/2013 5:07:07 PM (GMT-6)

I agree with gumby. You don't know anything for certain yet. Waiting for a diagnosis is hard, especially when you are being tested for scary stuff like IBD. However, just because you are being tested does not mean you have it. You really could just have IBS, and the GI is being safe and ruling other more serious conditions out.

Be here now - don't think about the what ifs - they completely ruin your present and also has a negative impact n your health. Get the tests done, but try not to scare yourself sick in the process. Also, remember, it is what it is - if you have it, you are already dealing and coping with it. So, knowing that you have it just means you can be better prepared. But, wait until you know for certain.

I have nothing wrong with me, and I get canker sores, and I've had eye inflammation. Things like this can be related to IBD, or like in my case, just be isolated incidents with no other correlation or consequence. So, try to stay positive, and hope for the best - that this is still only IBS, something you can and have been dealing with already.

I have trouble with what I am advising you to do - stay in the present. Whenever my husband has a new symptom, my head always stresses over it, and more often than not, it turns out that I was unnecessarily worried. So, find some chill pills, some distraction, hang out with some good friends, and try to put this out of your mind until you know something for certain.

PV

Thank you both - I didn't see the second post until after I hit the send button.

I promise to try to take a chill pill. Really, I will try.

If you do end up having IBD, then no, you don't have to go on any meds. Let's assume the worst for a few moments and it turns out you have IBD. You have gone for 20 years with IBS-like symptoms, so you could have a mild case of IBD for a long time. Probably not, but the possibility is there. And you've not been on any meds for it in that time - see what I am getting at? Crohn's and its sister disease, ulcerative colitis, are what's known as remitting-relapsing conditions: that is to say, they spontaneously go into remission and flare up. Meds can speed up remission, increase the time to another flare-up, or reduce the severity of flares, but they do not control the disease entirely.

In other words, meds really don't do quite as much as you might think. They don't seem to have a huge effect on the long-term course of the disease, for example, as in preventing surgeries, fistulas forming and the like. But please don't start worrying about that! You quite likely don't have an IBD, and if you did, it is very unlikely to be fistulizing or stricturing Crohn's.

On a different note, some folks are very into diet and supplements to treat their IBD, especially on the ulcerative colitis board. If that way appeals to you, you could search through literally hundreds of threads on the subject of various diets: SCD, Paleo, low-FODMAP, etc. Just do a site search or go through older threads. I hope this helps at least a little bit.

Thanks, NiceCupofTea. Very helpful especially about the thoughts on the meds - I find that reassuring. I'll check out that other board, too. I've read about SCD and FODMAP over the years. I make the SCD 24 hour yogurt, for example (in a real yogurt maker). I need to revisit the FODMAP info - I probably could get even more ideas from them. Thanks.

As to the doc's assistant, I don't really want to post it all on here for sake of confidentiality, but two main things contradicted the doctor. (Yes, the doc is a full m.d. / gastroenterologist - (spelling?) - he does regular office visits plus surgery etc.) The doctor named three types of supplements for me - and I found a generic of one of them. The assistant named a different type of supplement entirely - which is not related to the ones the doctor told me would be safe for my condition - and said it would be BETTER. The other contradiction comes from the book and videos the assistant recommended - those materials blame the disease (and the world's problems) entirely on one thing - which I find really far fetched - and my doctor never mentioned at all.

(Although they did a blood test for celiacs for me some years ago and it was negative.)...
Is there some other way to treat this - without meds- and without surgery?

There are many IBDers who control their disease with relatively mild 5-ASA or Mesalamines. The specific type of medicine usually depends on where the inflammation is located in your digestive tract.

As far as alternatives go, you can almost say that rectal meds such as mesalamine enemas are alternative since so few doctors prescribe them unless specifically requested. But they have an excellent reputation for effectiveness with relatively few side effects.

But if you are determined to avoid meds, (even though some are not so bad), then you can try diet modification. Sorry to be the one to bring bad news but the IBD forums are full of people, like myself, who tested negative for Celiac but later discovered that they still cannot tolerate gluten. The only sure way to test for gluten sensitivity, as opposed to gluten intolerance in Celiac disease, is to eat gluten free for a couple of weeks to see if your symptoms lessen.

Then try avoiding dairy. Gluten and dairy are the usual suspects but any food can cause problems. So I prefer a food diary or journal to isolate dietary triggers. For example, I always tried to eat healthy for years with generous amounts of cruciferous vegetables, etc. Now I find that cruciferous such as kale and broccoli trigger flare symptoms.

Popular supplements are fish oil and getting your blood levels of vitamin D, iron, and B12 checked to correct any deficiencies. Some like me use soluble fiber such as psyllium (Metamucil or psyllium seed). Others swear by herbal demulcents like slippery elm. You can search the forum for these topics.

Probiotics are probably the most popular supplement for IBDers. There are numerous research studies showing that certain probiotics, such as Saccharomyces Boulardii and Culturelle, are effective for maintaining remission. VSL#3 is probably the most popular and has been proven to prevent pouchitis. Benebiotic and RenewLife Ultimate Flora are also very popular choices. But we are all different and certain probiotics are more compatible than others.

Another alternative might be LDN:
www.healingwell.com/community/default.aspx?f=17&m=2489273

Our individual signatures indicate what foods we avoid and which meds and supplements we are using to manage this disease. Most of us are on maintenance meds.

At the top of the ulcerative colitis forum is the thread for UC resources. Much useful information including a description of LDN.

Thanks again both of you.

I did test removing both dairy and gluten for a couple months - and was not improved by doing so. (I'm glad, because I love my lactose free real dairy, and it seems to help my digestion.)

Will let you know what happens after the scope. I'm trying to muster enough courage to do it this week if the doc has room in his schedule.

Hello everyone,

Just wanted to thank you all again. I had my colonoscopy. The doctor saw: No IBD. No fissures. No Fistulas. No polyps. I'm awaiting results for microscopic colitis. I am relieved.

The prep ended up getting me very sick. They had to treat me for a few hours before they could do the procedure. The aftermath isn't the best, but it could certainly be worse.

I've also totally changed my mind about the assistant. I now understand better and really like this person a lot. He's been quite decent to me during this process, which was not smooth.

I have immense respect for all of you who have fought this battle. You're brave strong people, each of you. It was very kind of you to reach out to this coward with all the stuff you have going on. Thank you again.