Introduction and a question

[Shell]

Hello to all! I've been reading the posts for a while and have finally decided to start posting. I was diagnosed with LC in July. Once I was finally able to see a GI I was diagnosed fairly quickly. However I have had symptoms since sometime toward the end of last year. Before I was diagnosed I was seeing my PCP concerning the symptoms and she checked me for just about everything before deciding to get the GI doc involved. I was prescribed Lomotil which usually worked, but not always. Of course all it did was delay the symptoms, not fix them. The GI doc did some blood tests (celiac panel came back negative, of course) and the only thing out of the ordinary was that my SED rate was quite high: 68. Now, with the high end of normal being 20 and others saying numbers in the 30s were really high, I don't know what to make of my 68! Anyway, the colonoscopy showed nothing. When he told me that, I wanted to cry. Don't get me wrong, I was happy it wasn't cancer or one of the "more serious" types of colitis, but at that point I wanted answers and a plan of action. When the biopsy results came in with LC diagnosis I was prescribed balsalazide (Colazal). This is where my first question comes in...

Why does it seem like I'm the only person who has been prescribed this, especially as the first drug of choice? One reason I ask is because I've searched the forum and there are so few posts that I've found even mentioning it that it makes me wonder if, in all my research, I've managed to miss a horrible side effect or something and that's why it's not very common for LC treatment. Now, I know different drugs work better for different people, but so far it hasn't really worked for me. I've only seen improvement in the number of times I go to the bathroom each day. I've had nothing that even comes close to being normal. I know I'm being impatient since it's only been about a month, but I'm just so sick of this. I suspect that the GI doc didn't put me on Asacol because he knew that I was "lactose intolerant." Does anyone have any experiences with balsalazide to share? I'd certainly love to hear about it!

BTW, I am currently dairy-free and am considering going gluten-free again. Nothing diet-wise made things better in the past, though I haven't given up anything long enough to see a difference, I suppose. Getting tests from Enterolab are not even in the realm of possibility at this point in time.

Unfortunately this isn't my first autoimmune issue. I've had type 1 diabetes for 23 years (currently 30 years old). I hope at this point my body has had its fill of attacking itself and no more autoimmune issues turn up! The reason for me visiting this board sucks, but it's still nice to meet everyone here It's really late and I'm sure I've rambled on, so I apologize!

Shell

[Gas Bag]

Big Welcome, good luck and you came to the right place.

I am so sorry I have no answers for you, but loads of others will have good advice. All I know it never mattered much what I ate or didn't eat and no anti-diarrheal drugs, that I tried anyway, had any noticable effect on my D whatsoever.


Deb

[JLH]

Shell, We're glad you found us.

If you've been lurking for a while, you've probably seen Tex's welcome email to our recent newbies which spells out the three ways of treating MC.

I have not taken any meds for my LC in over a year but the inflammation doesn't seem to want to go away. I have been gluten, soy and dairy free. My symptoms have certainly improved.

[ant]

Dear Shell

I am sorry for the reason you needed to, but it is good that you found this board.

BTW, I am currently dairy-free and am considering going gluten-free again. Nothing diet-wise made things better in the past, though I haven't given up anything long enough to see a difference, I suppose.

Yes, the diet treatment can take a long time and with cross contamination in so many meals you may have been eating Gluten without knowing it. I am sure others will be along to give you more advice and answers to your specific questions on medication.

Best wishes, Ant

[tex]

Hi Shell,

Welcome to our internet family. As you said, it's a shame that you needed to find us, but we're glad that you did find us.

You're right - Colazal is not frequently mentioned on this board, as a treatment for MC. Maybe those who use it, don't see a reason to join this board. Probably, though, it's just not frequently prescribed. For one thing, it's not as heavily promoted, as Asacol, (which is arguably the most popular of the group of 5-ASA meds), or Entocort EC. You're probably correct that your doctor didn't prescribe Asacol because of the lactose ingredient. Many doctors are reluctant to prescribe Entocort, because they don't understand the way it works, and they view it as a typical corticosteroid, with typical corticosteroid side effects. The fact of the matter is, though, that unlike the other corticosteroids, Entocort EC is Enteric-Coated, so that it does not become activated until it reaches the ileum, and the colon. As a result of that, only about 10 to 15% of it is absorbed into the bloodstream, so that it typically has only about 10 to 15% of the side effect risk of the other corticosteroids.

If my memory is not playing tricks on me, I believe that Shirley used Colazal to control her symptoms. Hopefully, she'll notice your post, and either offer some insight into using it, or correct me for making this mistake. There may be one or two other members here, who have used it also, who might have some advice to offer.

The 5-ASA meds are typically slower to bring results than the corticosteroids, but you should be getting close to seeing results, (if the Colazal is going to be effective for you). If you don't see improvement within another month, I would ask my doctor for a prescription for Entocort, if I were in your shoes. Entocort usually shows some benefits within a couple of weeks to a month, for most patients.

The reason why your doctor did not prescribe Entocort right off the bat, might be because Entocort can affect your blood sugar, if you're diabetic. If you were taking Entocort, you might need to check your blood sugar levels extra closely, and you would need to be careful about changing doses, (of Entocort). I'm sure your doctor should be able to advise you on that, though.

Sometimes, it's not easy to see the signs of gluten sensitivity, and it does take a while for the GF diet to bring results, especially for some of us. Are you aware that there is an association between celiac disease and type I diabetes? That means that there is almost surely an association between NCGS, (Non-Celiac Gluten Sensitivity), also. As a diabetic, you are about 10 times as likely to be gluten sensitive, as someone in the general population. Note that the majority of patients with gluten sensitivity are asymptomatic or are not aware of symptoms, as mentioned in the article referenced by the following link.

http://spectrum.diabetesjournals.org/co ... 3/197.full

You can skip over the discussion about blood tests and upper endoscopy exams to check for villus atrophy in the duodenum, in that article, because unless you are a fully developed celiac, those tests results will always be negative. Most of us here on this board are just as sensitive to gluten as most celiacs, (maybe more so), but all of us, (except those who also have fully-developed celiac disease), test negative to those classic celiac screening tests.

In other words, IMO, you are very, very likely to be gluten sensitive. Not just because of the link with diabetes, but because of the fact that the vast majority of MC patients are gluten sensitive.

Again, welcome aboard, and please don't hesitate to ask any questions that come to mind.

Tex (Wayne)

[barbaranoela]

hi Shell-------happy to meet U---even under these *crappy* issues--

Just wanted to tell U----ASACOL did nothing for me--Entocort caused me neurological problems---and COLAZAL was my salvation--

I was mantained on it for several years----did great but the final STOPPAGE of COLAZAL was when I entered the hospital in 04 with a very weird Pneumonia diagnosed as AFOP----

When my specialist were caring for me in the hospital they called my GI and he -almost flew thru the phone --saying stop the COLAZAL --- cause it !!CAN!! be the cause of severe respiratory ailment----due to the longevity of being kept on it as a maintenance ~~~~~~ --IF it was that--to this day there is still that ???????

So its like U are damned if U do and damned if U dont!!!!!

I hope U get all of your issues taken care of----many here have been thru hell--but have taken the right *road* to recovery as U will do also!!
Sadly tis TRIAL and ERROR!!!

Barbara MCC'er

[Lucy]

Welcome!

I was prescribed Colazol in the beginning, but when I read it could cause headaches, since I had migraines so badly by then, I just elected not to take them. Diet has worked beautifully in my case without having to take medications. I'm not sure that Entocort was the first drug prescribed for M.C. back when I was diagnosed, but it could be my GI would've prescribed it had I returned to see him.

Yours, Luce

[MaggieRedwings]

Welcome Shell,

Nice to see you joining the group but sorry for the reasons that brough you here. I like Barbara tried Asacol, Chlorastymarine and Entocort and basically had the same results as her. Never used Colazol.

Stick around and feel free to ask any questions - we have all been where you are.

Maggie

[starfire]

Welcome, and I'm one of the Asacol users. So, Tex is corrected.

However, I was on Pred, then Entocort, to get the symptoms under control in the beginning. I consider Asacol, etc. to be maintainance drugs (my opinion), although at least a couple of people have had success with them alone.

I immediately thought of Barbara when you mentioned Colazol. I hope it will help you.

Sorry you had a need to find us and I hope you can glean some helpful information from our site.

Shirley

[tex]

Shirley,

Thanks for the correction.

Tex

[Shell]

Thank you all for the welcome, information and personal experiences! While I wouldn't wish this on anybody (well, maybe some of the know-it-all docs I've read about on here!), it's good to know I'm not alone with this.


Tex, I was thinking along the same lines as you about why my GI doc didn't prescribe Entocort. However, I recall a comment he made on the phone. Going over my results he said that what they saw from the biopsies it "wasn't a lot, but it wasn't insignificant, either." So, in his eyes it probably doesn't seem like I need Entocort due to having a "mild case" of LC. While it may be a mild case, especially compared to some of the stories I've read on here, it doesn't seem like it when I spend so much time on decisions about what to eat, when to eat, how to plan for my "issues" and the actual amount of time I spend in the bathroom. The blood sugar issues are the last thing I'd be worried about with Entocort, by the way. I already check several times a day and I'm extremely comfortable adjusting my own insulin doses. I was also aware of the increased risk for celiac due to my type 1 diabetes. That plus my LC...it seems like fate for me to be sensitive to gluten. I'm staying away from the stuff for now, but until I actually get test results spelling it out, I'm still going to remain hopeful that somehow, miraculously, gluten doesn't bother me.


Barbara, I had absolutely no idea that there was a chance for respiratory issues due to Colazal! How did I miss reading that somewhere?! Did you start the Colazal after you were already in remission or did it help you to acheive remission? Also, did you actually take Colazal or the generic? I'm using the generic.

Shell

[tex]

Your doctor's considering your case to be "mild", may indeed be why he chose Colazal over Entocort. He probably concluded that you have a "mild" case, (based on the pathologist's judgment, made after studying the degree of inflammation indicated by your biopsy slides). Unfortunately, there is no reason to believe that there is a very good correlation between such observations, and a patient's clinical symptoms, or number of food intolerances. IOW, what the pathologist sees on the biopsy slides, does not directly relate to the degree of suffering involved, for any particular patient. The pathologist can obtain a "measure" of the severity of the inflammation, by counting the number of lymphocytes that have infiltrated the epithelium of the colon, based on a measured reference area, (they count the number of lymphocytes in excess of about 20 lymphocytes present in a target area, because a normal, (healthy), epithelium, typically contains up to about 20 lymphocytes in that same representative area). IOW, if a patient's biopsy sample shows, say, 25 to 35 lymphocytes, then they might call it a "mild" case of LC, (depending on their personal preferences). By comparison, a moderate to severe case, might contain roughly 80 to 100 lymphocytes in that same size reference area.

Regardless of the degree of inflammation observed on the slides, there is no logical reason to assume that a "mild" inflammation will be easier to control than a moderate to severe level of inflammation. It might seem that way, at first glance, but closer analysis will reveal that inflammation is a lot like an infection, and one wouldn't prescribe a weaker antibiotic, just because an infection appeared to be mild. It's the bacteriological strain that determines the type of antibiotic needed, not the severity of the infection.

The risk of respiratory side effects with balsalazide is statistically fairly low, but it does exist:

Respiratory side effects have included nasopharyngitis (6%), influenza (4%), respiratory tract infection (4%), coughing (2% to 3%), pharyngolaryngeal pain (3%), pharyngitis (2%), and rhinitis (2%). Pleural effusion, pneumonia (with and without eosinophilia), and alveolitis have been reported during postmarketing experience.

http://www.drugs.com/sfx/colazal-side-e ... stem_15815

Tex