Knowledge Patience Discipline

JFR · Post by **JFR** » Tue May 01, 2012 6:09 am

These seem to me to be the three pillars of success. I have always been pretty good at the knowledge end of things. I can be pretty obsessive about research and figuring out how to use it. It's the patience/discipline stuff where I fall short. Patience supports discipline and discipline shores up patience. Let one slip and all the knowledge in the world will not matter. So when I started my journey here I was pretty desperate. Putting anything in my mouth seemed to trigger WD that would go on for hours. 6-8 immodium over the course of a few hours seemed to stop it until the next time I decided I needed to eat something and then it would start all over again. Given the severity of what was going on it was not hard to cut my food intake down to about 2 foods. I had pretty quick positive results, no more WD, but still far from normal. Tex's mention of mast cells and my realization that I had recently started eating many foods on the high histamine list really seemed to offer an explanation of why things had got so bad. This success combined with my enterolab results have convinced me that this is the way to go but I need to bolster both my patience and discipline. I think it was the immediate reaction of my body to anything I put in it that made the decision to severely limit what foods I was eating pretty easy and then it was the fairly quick results, d gone, that convinced me I was on the right track. And then when the enterolab results showed that gluten, dairy, eggs and soy were all problems, it only bolstered my belief the I needed to make permanent dietary changes. So now that I do not get immediate reactions to food, I need to work on the discipline and patience end of things. Although the D is gone I am still constantly uncomfortable in ways that are hard to describe. There seems to be constant movement and gurgling and bloat going on so that I am always aware of my gastrointestinal tract and never sure of what it is going to do. I am able to leave the house now, which is good, but I am constantly worried, which is not good, so I am working on being patient and having discipline, controlling anxiety too, and holding onto the knowledge that this is the best way to heal what is no doubt a lifetime of damage to my gastrointestinal tract.

Jean

Polly · Post by **Polly** » Tue May 01, 2012 8:28 am

Hi Jean,

Oh boy, you are right about that! If I may be so bold, I'd like to suggest a 4th word.

I was the first here to have multiple intolerances, so I was feeling my way mostly in the dark. It took me almost 9 mos. with diet to see my first formed BM. I think the only reason I stuck it out for so long, aside from the 3 words you mentioned, was because of the incredible support I received here. (That is the major reason I have remained around here for 11 years after remission - to help pay back what I received.)

So, I would add "support"...............knowledge, patience, discipline, and support as the 4 most important tools on the path to recovery.

Thanks for sharing your thoughts.

Love,

Polly

JFR · Post by **JFR** » Tue May 01, 2012 8:56 am

Thanks Polly,

You're right, support too should be added to the list. It helps so much to know that there are others who understand this struggle. I have been struck by how nice the people on this forum are and how generous people are in sharing their knowledge. This can be so isolating and to have some place to come is a great help. I am so glad I found you all and I appreciate that you and others have stuck around so long for the benefit of us new members.

Jean

Deanna in CO · Post by **Deanna in CO** » Tue May 01, 2012 9:57 am

I wish there were a way to just "like" these posts like we do on Facebook - don't really have much to add except that I agree with both Jean and Polly. I can't say how important it is to have the support of others on this list, especially those like Polly and Tex who've been around this disease for a long time and know the "ins and outs" of it.

Thanks!

Deanna

Martha · Post by **Martha** » Tue May 01, 2012 12:03 pm

I, too, want to say how thankful I am for the advice, encouragement, and support of the members of this forum.

Love,
Martha

Lesley · Post by **Lesley** » Tue May 01, 2012 2:40 pm

Those 3 words are mine too. And without the support of the people here I wouldn't have been able to get as far as I have up till now.

Although the D is gone I am still constantly uncomfortable in ways that are hard to describe. There seems to be constant movement and gurgling and bloat going on so that I am always aware of my gastrointestinal tract and never sure of what it is going to do.

This is ME, and has been for months. I don't seem to be able to move forward.
My patience often wears out and my discipline wears thin. The support, however, never wavers, and that's what keeps me going!

JFR · Post by **JFR** » Tue May 01, 2012 3:35 pm

Leslie,

I'm a Jewish ex-chicken soup making grandma too. Maybe it's the Jewish penicillin, as iffy as other antibiotics, leaving us in this post chicken soup state of intestinal distress. I miss my weekly pot of soup simmering on the stove. I think when I am tempted by something I should just adopt the knowledge, patience, discipline mantra. Say and repeat.

Jean

Kari · Post by **Kari** » Tue May 01, 2012 4:13 pm

Hi Jean,

Seems like you've got the right "recipe" for healing :). I'm so glad you're able to venture out again, as it was sad to read about your daughter's wedding that you cannot attend. Perhaps now that you're starting to see some signs of improvement, you can raise your hopes about taking the trip to visit them. When I read your post about your daughter's wedding, I got all choked up. Then my sadness turned to anger at all the GI's out there who call MC a "nuisance disease". Part of their training should be to come on here and read some of the stories like yours!!!

On another topic, I know only too well about the constant gurgling, and will never forget the first time after countless years it was quiet down there. It was almost a bit eerie, as if a constant companion had left me :). However, I have to say it was immensely enjoyable, and I still appreciate the "quiet", and get quite upset whenever the "orchestra" starts up again. For me, it is taking a very long time to get over the emotional impact of MC - in fact, I don't think it will ever completely go away :(.

I also agree about how very important the support on this board is to all of us. Don't know where I would be now if it wasn't for everyone here. A big thanks to you all!!!

Love,
Kari

JFR · Post by **JFR** » Tue May 01, 2012 5:01 pm

Kari wrote: When I read your post about your daughter's wedding, I got all choked up. Then my sadness turned to anger at all the GI's out there who call MC a "nuisance disease". Part of their training should be to come on here and read some of the stories like yours!!!

Kari

Thanks Kari. Pictures of the wedding are now appearing on facebook. They bring tears to my eyes. My daughter looks so beautiful. I am trying not to feel too jealous. Someday I will get there. I have never been officially diagnosed. When I had a colonoscopy a few years ago the GI doc told me I didn't have celiac, everything looks fine, eat fiber, even though I told him that fiber makes it worse. All I have ever been diagnosed with is IBS. I pretty much gave up on doctors a few years ago. I am making progress on my own and I am optimistic it will continue.

Jean

carolm · Post by **carolm** » Tue May 01, 2012 6:35 pm

I pretty much gave up on doctors a few years ago. I am making progress on my own and I am optimistic it will continue.

Okay you two now I'm going to tear-up. In my little town of 20,000, if I can get an accurate diagnosis within 6 weeks of my first big flare and 2 weeks later see a GI's ARNP who prescribed Entocort and supported me in dropping gluten immediately and pursuing Enterolab tests.... I just don't get why it has to be such a struggle for so many. Not that my GI and I have all the answers but I can call them and before 5:00pm the nurse or ARNP will call me back and address my concerns and questions.

It really makes me angry, Jean, that you are battling without the benefit of a diagnosis. My hat's off to you. I'm glad you are here and that I am too, because I've needed both the wisdom of this site and medical help to get back on my feet.

Keep digging,
Carol

Christine. · Post by **Christine.** » Tue May 01, 2012 7:23 pm

Hi Jean
You seem very strong. I admire your ability to analyze your situation and know what you need to do. I also know what you mean about the gurgling, gas etc. I have been gf/df/sf/ef for about 3 months and it just occurred to me this past week or 2 two that all is generally calm on the digestion front. In fact today is the first day since last October that I had no bm whatsoever! Yikes. I truly agree that with diet, support from your friends here and mental toughness you will prevail......and may you travel to see your daughter soon.
Chris

Lesley · Post by **Lesley** » Tue May 01, 2012 9:31 pm

Jean,
I wonder if imbibing all that chicken soup over the years has rendered it poison to us? Why would chicken soup become harmful to Jewish mothers and grandmothers. This Passover was the first time in my memory I couldn't have matzo balls or chicken soup. REAL deprivation.

I am on FB if you want to friend me. Message me (goes for anyone on this forum).

Glad you can see pics. I got to watch my new grandson have a bath on Skype today, and talk to the older ones. I cried afterwards.
I know just how you feel about not being at your daughter's wedding.

Carol, I think I need to come live in YOUR town. My doctor is HOPELESS! No help at all. I have IBS, MC, an intact hiatal hernia wrap, a 2 cm hiatal hernia, oesophagitis, and I can't get him to talk to me at all.

Chris, I don't know how long you have had MC, but there would be no way I could go 2 days, let alone 2 weeks without noticing that "all is quiet" on the gut front. Lucky woman!!!

JFR · Post by **JFR** » Tue May 01, 2012 9:39 pm

You are all so kind.

Carol - I live in a little town too, smaller than yours, about 12,000. The one GI doctor struck me as a person who wasn't really happy doing what he does and certainly not someone who listens to his patients, but by the time I saw him I had learned not to expect much from doctors so getting no useful help was what I expected. I had pretty much concluded that I had to be my own doctor on this. When things flared worse then they ever had been I thought once again about seeing a doctor but figured it wouldn't be worth it so I headed for the internet and found this group and am hopeful that the severe dietary changes I have made will lead to continued improvement. Luckily it seems I can control things enough without any prescription meds to make self-doctoring a workable route for me to take. One thing that I have learned over time is that it just isn't helpful to immerse myself in negativity and anger so I try my best to deal with whatever life presents me with some measure of equanimity. I wish western medicine wasn't so limited in what it had to offer and so narrow minded in what it will consider, but that is something beyond my control or influence. Luckily there is this forum and Enterolab (I just ordered panel c, the 11 antigen test) and MRT if I can find enough money for it. Knowledge, patience, discipline and support. What more does a girl need?

Christine - It is so helpful for me to know from you and others that I am not alone with these strange gurglings etc. I used to become nauseous for extended periods of time (luckily, not so much any more) and I remember one day, after having been nauseous for weeks on end, realizing that the nausea was gone. It's a great feeling to have a malfunctioning system decide to normalize, better yet to know why. I hope to attain that state again. Then it's off to St Lucia, what my daughter-in-law referred to today as paradise, having just returned from the wedding.

Jean

wonderwoman · Post by **wonderwoman** » Tue May 01, 2012 11:26 pm

I love these

KNOWLEDGE, PATIENCE, DISCIPLINE, SUPPORT

I wrote them on a sticky note and stuck them on my computer where I will see them every day.

The support here is terrific.

maestraz · Post by **maestraz** » Wed May 02, 2012 4:55 pm

Gurgling-- I've been living with it for some years pre-LC diagnosis, never suspecting it was due to anything but the fact that...
I was a middle school teacher in my former life, luckily before my first major LC flare, which happened the first winter of my retirement. Anyone among us who has been a teacher knows that when you teach, you get maybe 15-20 minutes of actual lunchtime, if you're lucky, to speed-eat whatever lunch you have, and chug down some sort of coffee or soda.
Picture my after-lunch class, during which the gurgling of my system would be SO loud that kids in the back of the room would say, "Whoa, Mrs. Z, is that, like, your *stomach*?"

I still get occasional gurgling after lunch, and still hear those 13-year old voices, and am able to laugh it off. But that ability has been hard-earned over the last year-plus.

RE: not being present for long distance occasions, Lesley and Jean, I teared up over both your situations. I have recently found out that I will be a Nana in November, our first grandchild. And said baby and parents will be in LA (I'm in New England). So I will be watching a lot of stuff via FaceTime that I would love to be present for. Of course I will go out there to help out right after the birth, but the idea of watching a bath, or reading a story, via a screen is sort of depressing to me.

I look to Martha as my role model for long-distance grand mothering :))

LOVE the four words for us to live by--Thanks for that.