Not doing well...

[Lesley]

I still feel terrible. I'm not having D, but have only had one, not Norman, BM in 5 days. It wasn't watery, but was full of undigested food, and certainly felt like it could have been D had I not had some Norco.
There is pain between my L&R rib cages right in the middle, around the area where the large intestine and the stomach connect. The pain is worse just after I have eaten, but it comes and goes. Sometimes gurgles start around this time, along with pressure in the lower abdomen, often in the lumbar back area and below, but also in the very bloated front.

It still hurts all the way down when I eat, especially something that is slightly above lukewarm.

I am still exhausted,bloated and have pain all over.

I know I have eaten something that has REALLY disagreed with me by the fire-hose D that I get almost immediately after eating it, like the poultry episodes. If I eat mashed potatoes moistened with beef stock or, like this morning, potatoes mashed with steamed salmon (for protein) there is no D, but the pain, bloating and pressure.

I know I am just reacting to FOOD in general, but that has been the case for a very long time. No feeling better is happening.

If it wasn't for the C I would give the meds a try, but I have NO idea how much to take, and whether it would make the C worse.

I know you are not to hear this saga, and must be sick of hearing me whining the same old whines, but I really am at a loss as to what to do.

[carolm]

HI Lesley,
It's no wonder you feel so awful--- undigested food in your stool, you are probably not getting the nutrients you need and reacting to everything! There have been times I've entertained the idea of a entirely liquid diet, just because I was tired of reacting. In fact I still have that thought from time to time.

Clearly I am not one of the more experienced people on this board, but I have also gone through stages of C where I had no BM for 5-7 days. That was when I was on 9mg of Entocort per day. However, even before i had LC I was prone to C so I don't want to blame the Entocort. If it wasn't for Entocort I wouldn't be functioning at all. My strategy at that time was take a tablespoon of Milk of Magnesia concentrate daily until I had results and I was doing fairly well finding a balance. (I originally tried Colace tablet every day but had no results). Of course my diet is only rice, potatoes, baked chicken, lean ground beef, chicken broth, green beans and rice cakes, so there was no fiber and even right now, fiber is not a good thing. Now I am reducing the Entocort and experiencing more D--like 4 out of 5 days this week.

It's the inconsistency of LC/MC that is really infuriating. Just when we think we have a pattern and a strategy, the response changes and we are starting over-- at least that's how I feel. It's distressing to say the least.

I wish I had some truly outstanding advice to give you, but I'm still in a 'trial and error' phase myself. Did your Dr. check your gall bladder and pancreas?
I hope you find some relief soon.

Carol

[tex]

Well, we're all pretty much stuck in a "trial and error" pattern, until we can find a routine that works for us. I've always tried to take a pragmatic view of this disease, and when what we're doing is not working, and we've given it a fair try, then maybe it's time to consider trying something different.

Lesley, since you can't seem to find any food that doesn't cause some sort of reaction, I believe that if I were in your shoes, (and I was, about 9 or 10 years ago), I would try either 6 mg or 9 mg of Entocort, per day, probably plus one or two stool softeners. Here's why:

Your inflammation level is high, (as demonstrated by the undigested food in your stool, even though you're predominantly having C. The undigested food indicates that not only your colon, but also your small intestine is inflamed, (and that's why you're having the pain symptoms that you describe - if your small intestine were were not inflamed, you might still have D, but at least the food would be properly digested). IMO, poor digestion is going to tend to perpetuate the reaction, whether it's marked by D or C.

This is a long shot, because the Entocort will provide no benefit for the duodenum and the jejunum, but perhaps enough of it will be absorbed by the ileum and the colon, to provide some degree of inflammation suppression. IOW, I'm thinking that maybe by suppressing the inflammation in your ileum and colon, that may suppress your total inflammation level enough to allow your digestive system to shift gears, and begin to digest food again. It may not work, but what you're doing now doesn't seem to be working, either.

Entocort can only make the C worse, though, so if you try this, IMO, you're going to need to up your dosage of stool softener significantly, because it's not doing the job, even without the Entocort.

These are uncharted waters, because C is more difficult to treat than D, to my way of thinking.

The reason why warmer foods or liquids cause more pain is probably because the higher temperature causes additional gas expansion, causing more pain from any existing bloating. That was always the source of my worst pain - gas that I couldn't get rid of for days at a time.

I'm not recommending that you should try this - I'm just throwing it out as something to think about.

Tex

[Lesley]

Carol,
Thanks for your reply. I so empathize with your struggles. I have been eating meat and potatoes basically, interspersed with some peeled, baked apple slices, and a little So Delicious sorbet. Those things don't send me to the bathroom. They don't even produce a LITTLE BM. Even when I wanted to force a BM and ate some goat's milk cheese nothing happened.
Poultry did it. Both turkey and duck. And that was fire hose D.

I am scared s**tless (pun intended) that the new GI will start making rumbles about surgery like the old one . If all parts of my small and large intestine are inflamed WTH (read an F) are they going to take or leave behind? I will not have surgery. It won't solve the problem and will make me sicker.

The pain from the hot stuff comes when it's on it's way down. It's OK when it gets down, and a different pain starts when it is in my stomach. It's the esophagus, which makes me worry that there is some excoriation. So the whole alimentary canal is really, really screwed.

I spent an hour in the pool this morning to get some exercise.
This afternoon my son came to take me with him on his round of errands "to get my mind off this", as if it could. I HATE being so immersed in it, but when it hurts all over and all the way down it's impossible not to. I was hurting so much I could barely walk.
Adam is worried that giving up so many foods will lead to me not being able to digest them even when the inflammation is under control (reminded me of our dairy conversation.) I explained that I have to digest SOMETHING before I can worry about what I will be able to digest later on.

Somehow I have to get this under control, so I will start the entocort, and take the stool softeners and. Should I add some MoM if the stool softener is not working?

[tex]

Your esophagus seems to be really inflamed. It makes me wonder if your lower esophageal sphincter is working at all. You really need to see a pain management specialist, because the Norco is almost certainly causing your GERD. Of course, other drugs can also make it worse. You're not by any chance taking any tricyclic antidepressants, or bronchodilators, (for asthma), are you? Antihistamines, calcium channel blockers, and diazepam, can also cause GERD, or make it worse.

You're certainly not the only one here with small intestinal inflammation. IMO, anyone with secretory D, (high-volume, watery D), has small intestinal inflammation. Secretory D doesn't originate in the colon - it originates in the small intestine, and so just about everyone with MC has small intestinal inflammation. Most GI docs don't realize it, though, because its not a part of the original disease description.

Should I add some MoM if the stool softener is not working?

That would probably be a good idea.

Tex

[brandy]

Hi Lesley,

I found moderate exercise (like your pool exercises) and an easy yoga class helpful to relieve the "stress cycle" of the disease during my toughest times. Also...this is going to sound really weird but during yoga I would kind of meditate on "solid bms."

I can't really comment on your other topics as I'm not as scientific as the others.

Hope you do better!

Brandy