Flying Solo Without a Parachute...

[wmonique2]

Hello dear friends,

I need my friends to chime in on this one. I am at crossroads and very insecure about the next step:

I've been on mesalamine since I was diagnosed some 20 months ago. I took 3/day and entecort. Since I started taking anti-histamines I ditched the entecort and reduced mesalamine to 1/day. I found out that my issue is mostly mast cells, not D and not C.

I told my GP doc that I wanted to ditch my last mesalamine. His answer was that I cannot stop taking anti-inflammatory meds until my next colonoscopy when it is determined that I am free of inflammation.

Is he right?

I am now scared to do it because I am afraid of a nasty flare up that can last months and set me back.

Or should I just do it like many on this board have done and just stay on the anti-histamine which is what has helped me the most with the nausea I suffered from. I have never had D or C since I was diagnosed.

So, friends, your chance to weigh in...

Thanks for all your feedback.

Love,

Monique

[Joefnh]

Hello Monique as you hang onto your parachute! Love the analogy

First from what I have read you have addressed the major issues regarding foods that you react to. This is the most important first step. Next you used the medications to help the healing process along...this apparently has also worked, as you have been able to eliminate the Entocort and reduce Mesalamine by two thirds. These are major accomplishments Monique and ones to take some sense of accomplishment from.

Your GI doctor is most likely working from the premise that the inflammation is still there, although he probably does not realize the hard work you have some to adjust your diet and address the mast cell issues. Additionally he may not realize the importance that foods play in MC.

At some point along this road Monique you will have to take these steps. There are no guarantees that there will not be a flare up, but it sounds like you have done all of the right things and taken the necessary steps. At some point it will be time to test the changes you have made, only you can decide if now is that time, from your posts though it does sound like your at the point to take this step

Take care and best wishes Monique.

[carolm]

HI Monique,
obviously I am no doctor but my question is this: how will your doctor know if you are free of inflammation..... if you are taking an anti-inflammatory drug? Won't taking an anti-inflammatory drug at the time of your colonoscopy mask any potential inflammation? Am I making sense? Like Joe says, since you've addressed your food sensitivities and made the changes you need to then you've minimized your inflammation through those steps. I wouldn't want to encourage you to do anything that you are uncomfortable with. You've made great progress.
Follow your instincts. I had a flare about 4 months after stopping Entocort but it was much shorter (only a couple of weeks) than the major flare that started it all. Even if you flare you are much healthier than you were. I'll bet you would come back much faster like I did.

Just some random thoughts from me.

take care,
Carol

[tex]

Hi Monique,

Did your doctor advise you to change your diet in order to control your MC? If not, then he obviously believes that the drugs that he prescribed are actually controlling your inflammation associated with MC. That's why he believes that you need to continue the treatment until he can officially pronounce you "cured", based on negative biopsy results.

When is your next colonoscopy? If it is any sooner than your regular cancer screening interval, then he is on a fishing trip, trying to learn more about MC. The point is, your biopsy results probably won't be normal until your gut has had at least 3 or 4 years (and preferably 5 or 6 years), to heal on the diet. Actual healing, sufficient to return your mucosal cellular histology to normal, takes much, much longer than most GI specialists realize.

We have members who have weaned their mesalamine dosage down to 1 every 3 days, and remained stable on that dosage indefinitely, so you might want to consider that option.

Love,
Tex

P. S. I suspect that Carol is correct, that taking an anti-inflammatory drug right up to the time of a colonoscopy exam will almost surely artificially suppress inflammation (if there is any potential for inflammation). Of course, if no inflammation is being generated (because of your diet changes), then an anti-inflammatory drug should be irrelevant to the results.

[wmonique2]

JOE---thank you so much for your reply and for laying out the scenario as you did. You're a good logical and linear thinker...


CAROL---your question is valid and a very good point. How would the doc know that I am still having inflammation if I am taking anti-inflammatories? My only answer to that is that he'd probably be looking for the presence of lymphocytes, which is what he found last time, hence the dx of LC. I remember yours and mine flare, we flared at the same time last year and it was awful. Mine lasted forever and I was so thin, it was scary. There is another thing that this condition does to all of us. It introduces fear in you even if you have the soul of a valiant soldier.

TEX--thank you for shedding light on all this and for always amusing me with your Tex-isms (an old word I just invented). My colonoscopy won't happen for another year and half and I wanted to be proactive in my treatment. And when I read that other members take the meds every 3 days, it felt right. It is the thing that I'll do so that I can test whether it's gonna work and I won't feel that I am flying solo without a parachute

Again, thank you.

Love you guys,

Monique

[Gabes-Apg]

along the lines of Carol's and Tex's thoughts

the dr's measurement of inflammation and 'us' the patients guage of inflammation can be quite different.
he is only looking at a certain type of inflammation in one part of your whole body

for us - it is minimal to no symptoms.
the only way to know if we have reduced the inflammation, healing is to go medication free and see how our MC management plan is going.
is inflammation elsewhere causing issues, are histamines at play? is the diabetes having impact and do you have to make adjustments for that etc etc his assessment will not be able to gauge this.

[gluten]

Hi, There are tests that measure inflammation. Has anybody ever had a CRP test. Jon

[wmonique2]

Hello Friends,

Well, my attempt at ditching mesalamine was very short lived. I didn't take it for 24 hours but the following day felt queasy a couple of times.

So, apparently mesalamine works on mast cells too. The anti-histamine works well but it is not enough...

Any ideas or suggestions?

Thanks,

Monique

[tex]

So, apparently mesalamine works on mast cells too.

That's probably true, because that's how corticosteroids work, by suppressing mast cells.

Any ideas or suggestions?

Mast cell specialists prescribe higher doses of antihistamines for patients who have persistent urticaria problems. I've seen at least one paper that mentioned the use of up to 4 times the labeled dose in difficult cases.

Tex

[wmonique2]

Tex,

Thank you for your suggestion. I wondered if it was possible to up the dose and you confirmed it...

I reread your chapter 14 last night, the one addressing mast cells and I noticed that I was eating too many foods with HIGH histamine content like bananas, dried fruits, pineapple etc...so I think if I eliminated those, it might help.

I'll give this another try.

Thanks again, Tex.

Love,

Monique

[tex]

Monique,

You're very welcome.

You may have tracked down the problem, and cutting some/most of those foods out of your diet may be the key. I hope it works. It can take a few days for histamine levels to decline. If you happen to have any Histame on hand, it can bring the level down faster, by purging histamine from the system.

Love,
Tex

[wmonique2]

Tex,

I wondered how histame would work for us...I didn't want to exacerbate the situation by adding it but I'll get me some. I remember we had the histame discussion a while back and I think it was Polly who took it. Why is it that more of us aren't taking it? I am curious...

Thanks,

Monique

[tex]

Normally, unused (excess) histamine that remains in circulation is removed by diamine oxidase (DAO). Apparently, IBDs are sometimes/often associated with a DAO deficiency, which leads to a slow buildup of residual histamine in the blood, and this is, of course, inflammatory. Histame is a replacement for DAO. IOW, it is likely to be the most beneficial in cases where residual histamine levels are too high, especially in cases where the buildup is due to a DAO deficiency.

Tex

[Leah]

Hi Monique. Just when I was about to ask about your high histamine food intake, you chimed in yourself! I wanted to add that you must be aware of leftovers also. The longer a cooked food is in the fridge, the more histamines it has. My three day rule seems to work for me :)
Good luck
Leah

[wmonique2]

Thanks, Leah...I remember the leftovers discussion we had a while back...three days sounds good to me...

I am confused about one thing. I didn't test positive for dairy or tuna with enterolab so theoretically I can have them. Yet, those same foods are high in histamine...I am puzzled.


Monique