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Shelly
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New and looking for help

Post by Shelly »

Hi everyone!

My name is Shelly and I was diagnosed with MC in August of last year after a colonoscopy. I didn't have the hallmark symptom of MC -diarrhea. I had a lot of pressure on the rectum and mucus in the stool. I was treated with colazal and I was symptom free after that - "I think".

Since then, during most of my menstrual periods, I have had shooting pain that lasts two hours or so. My Ob/Gyn said it was probably hormone related and possibly a follicular cyst resolution. Seemed to fit, as a few of my friends have had cysts that rupture that caused similiar pain. Since August of last year, it has gotten worse in severity and frequency. Last week I had the same sharp shooting pains (that I would describe as a fast peircing or a cutting feeling) . They lasted longer than ever before - almost an entire day and was followed by nausea and and all around feeling of "not myself". Last Friday, I had an ultrasound to rule out ovarian cysts. It came back normal and the Nurse Practitioner ( couldn't see my Dr) dismissed it as "severe dysmenorrhea" or in other words - painful cramps. I mentioned my MC to her and it wasn't even heard. I left thinking "No way -this is something more."

Today I am sure it is a return of MC as I have the same pressure on the rectum and "achey-ness" in the gut. I am seeing my GI dr tomorrow morning. I maybe looking at entirely two different disease
processes - I'm not sure- one Gyn related, the other GI related. But I'm starting to wonder if there is a link between the two.

My question to you all is - Has anyone here had shooting pains seemingly triggered by monthly hormones???? Has anyone had other symptoms and not diarrhea?????

Thank you for reading this. I appreciate any feedback prior to tomorrow when I visit the Dr.

Thanks again,
Shelly :smile:
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Post by Lucy »

Hi Shelly,

Let me be the first to welcome you to our humble home! I know you are very concerned right now, but I want you to know that we find our way though the M.C., and you will, too. I won't be surprised if there's not someone who has experienced the shooting pains related to their menstrual cycles exactly as you have described.

I can really identify with you in terms of all the mucous you've been passing, and as you probably know, that's due to the inflammation in your gut. I had copius amounts of mucous in my stools as well until I got on a totally gluten free diet.

You can find out lots about the gluten free diet from celiac.com if you like, but I recommend joining a local celiac group, even if you don't have the classic celiac diagnosis.

I would NOT stock up on all the gluten free subsitutes too far ahead of time, just enough that you can get passed the cravings for a few weeks for the foods you can't have if you want to give yourself a test to see if you notice any change in how you feel eating gluten free (gf).

An important thing to remember while you do this elimination test of gluten is that this is not an immediate reaction. Yet, many of us are so damaged that we are intolerant of lactose (lack the enzyme to digest it).

The reaction to lactose usually occurs within a couple of hours, unlike the delayed immune reactions we have to gluten, and unfortunately a few other foods, including dairy casein, another protein. You have to thoroughly remove it from your diet which is not obvious in terms of how you do it as much of it is hidden in food additives, even injected into meats, marinades, etc. Fortunately, many of us start to get some noticeable improvement in the way we feel as we discover more and more places where gluten is not obvious.

If you ever see a copy or want to order it online, of a beautiful magazine called "Living Without" it has one page gluten that explains alot to help you with reading labels to know what to look for, and another page that does the exact same thing for dairy.

Personally, I would leave off soy from the beginning, so as not to confuse things, just in case that's a problem for you, especially since it's so easy to leave it off. You can always try a trial of it later, once you're feeling better.

Many docs, including GIs who are supposed to be knowledgible about classic celiac disease have no clue that M.C. is related to gluten sensitivity (gs), at least not yet.

Puzzling because the pathology slides look identical to those of the small bowel with C.D., but anyway...

My other symptoms I had are almost too numerous to mention in a welcome message. There are so many of them, occurring all over the body, due to the massive inflammatory process going on.

We are probably the largest group online anywhere to have multiple food sensitivities/intolerances, so once you've done your test of clearing out all the gluten in your diet WITHOUT CHEATING to be a reliable test, then the group can help you with questions and monitoring your progress. We enjoy doing that!

I had a complete removal of ovaries, uterus, etc., due to a massive ovarian tumor years ago, so I don't think the only sharp shooting pains I've ever had had anything to do with female hormones, particularly since it occurred so many years after that surgery.

What happened was that my rectal tissues were extremely swollen about the time that I'd developed a goiter on my thyroid (this goes along with the M.C., by the way). I had the extreme shooting pain while sitting down in response to rectal pressure, thinking I had to have a bowel movement, and then, that I had hemorrhoids, which naturally I did with all that swelling and irritation!

Anyway, when I sat to evacuate the "stool" I thought was there (I'd felt urgency) I had a sharp shooting pain that ran all the way up one side of my head, behind my left ear.
It made me feel sort of light headed, and it hurt my head for long enough that I thought I might pass out.

I assumed it was a vaso-vagal response from the pressure on the vagus nerve, but not ever having had one of those, I couldn't say for sure. I had more mild sensations of what I thought might've been from the same cause, but who knows?

This is just a wild guess, but if it was a vasovagal response you had, could it be that all the added congestion during menses, or right before, could be the straw that broke the camel's back, so to speak, in that you've probably already got so much congestion in your rectal area as this disease process can occur anywhere throughout the gut (mouth to anus)? The female organs, bladder, and rectum are all bunched up in that same general area.

Hope you don't mind my speculating.

I suppose you could ask your GI to check you for classic celiac disease if you like, but many of us who are definitely gluten sensitive test negative on the state of the art blood tests. Be sure that your doc uses Promethius Laboratory if he tests you, or at least Mayo Clinic's blood test. Your doc can find out how to cooperate with Promethius by getting on their website. My sister is a family doc, and she's done that. I think they have an arrangement with Quest Laboratories to collect the blood for them, and send it in which makes it lots easier on the docs office.

If your tests come back positive, that means you also have celiac disease of the classic form, so your doc would probably want to do endoscopy of your small bowel.

One thing you could do would be to ask that doc's office before you go whether he uses Promethius or at least Mayo's labs to do the celiac blood testing. I would make sure the staff understands to ask him directly as some may think, since it all goes through their main lab, that that's who actually runs the tests. You want the most accurate tests, after all, and these are supposed to be the most accurate for the blood tests.

Conventional docs don't yet do the stool tests, but they are actually 100 percent accurate for the classic celiac disease, and pick up less severe damage to the small bowel like we also tend to have.

Have to finish later. Yours, Luce
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Post by annie oakley »

SO glad to have you join our happy family here. :welcome:
Hugs Oma
May I be more compassionate and loving than yeterday*and be able to spot the idiots in advance
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Post by cludwig »

Hi Shelly,

I am fairly new here as well and I can tell you that the kindness and experience here is amazing. You never feel as vulnerable as when you're sick and not getting the help or correct info that you need. I've received so much help here...don't even want to think where I'd be without them. I personally don't have your particular symptoms....seems we're all a little different. I have been working on my diet for a few months and am heading in the right direction....you will too soon. Welcome.

Love,
Cristi
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kate_ce1995
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Post by kate_ce1995 »

Hi Shelley,

I can relate to the sharp pain. I also had endometriosis and when I had surgery for that they said my uterus was adhered to the colon. So I of course said, ok thats why the sharp rectal pain. Well, I had a hysterectomy last November and they had been wrong about the adhesion of the two. So it must have been either related to the development of my MC, or to the menstrual difficulties I had. I'll never know, but if you are having it coincidental to your period, I'd guess its menstrual.

Having said that, if I remember from my endo books, prostaglandins are the hormone that causes smooth muscle contractions (i.e. cramps) and that the colon is also a smooth muscle. Hence why many women get D when they have their period. Do you take NSAIDs for the cramps/stabbing pain? You might do a search about prostaglandin inhibitors. I can't remember the details (how quickly we forget), but I think there are certain dietary minerals/vitamins that are supposed to reduce bad prosaglandin production (there are good ones too...its confusing).

Anyways, WELCOME. This is the nicest group of people you'd ever hope to meet.

Katy
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Post by Lucy »

Hi again, Shelly,

You have just heard from our resident expert by way of experience with female problems, Katie!

Wow, I sure do need to edit my posts, but just have to do them hurriedly or sleepily these days -- long story.

I think she's given you a very plausible explanation of the pain.
Was yours shooting pain restricted to the rectal area alone? That's where mine seemed to start, with the pressure, but went on up to the head, as I described. Weird, really.

I hope that if you've not already done so, that you'll read all the introductory material at the top of the subjects list, and then fire away with questions.

As you'll discover there, there are some on this board who've chosen a medical route, and others who've used a combination of diet and medication.

The most common favorable results from this group as well as from some of the literature I've read online seems to be from the Entocort which you can think of as sort of a topical steroid because it "dissolves" at the place where the problem is inside the lumen of the gut after you swallow it. Therefore, not nearly as much is absorbed into the body proper as with regular steroids.

One approach that some have used is to use the Entocort just long enough to calm things down while learning all there is to know about the gf diet, and applying as they learn each bit of information -- there's a steep learning curve, and at first, you feel like your head will explode from the overload.

Don't despair though as many of us here know how it would've been simpler to eat gf back then, had we known what we know now. We can tell you a simpler way to go about it that will cool your head a bit, but it's still a good idea to get some basic information from a local celiac group, in my opinion, at the start. There is a very steep learning curve here, so don't feel all alone if you feel that way.

One very important thing I'd like to emphasis here is that one must never stop ANY steroid, including Entocort, without doing so gradually under the instruction of your doctor, and add being informed about it even while doing that. This can cause serious problems, and not all that uncommonly, death can result from stopping it too fast.

Only thing about doing meds while you're checking for response to the diet is that you won't be able to notice the effects while the medication is masking the symptoms, but you can always just that after you decide to get your doc to ween you off.

Need to go.
Yours, Luce
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tex
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Post by tex »

Hi Shelly,

Welcome to our group. I hope that we can help you to find the solutions that you seek.

First of all, I wonder if you are aware that while the symptoms of MC can be controlled by proper treament, there is no known cure for MC, (though it occasionally may go into spontaneous remission for a few lucky individuals). IOW, for most of us, we have to continue our treatment indefinitely, in order to keep our symptoms under control. For those who control their symptoms by diet, that means the diet must always be rigorously followed, and for those who use meds, a maintenance dose of the med of choice, must be regularly taken, or the inflammation will return, and therefore the symptoms will return. So yes, if you haven't been taking the Colazal for some time, you are probably experiencing an active MC reaction.

Not all of us experience diarrhea during a reaction. Some experience constipation, and some alternate between the two. I am one who had alternating C and D. If I remember correctly, Celia, (who is now in France, and unable to access the internet), is one who had only C.

Contrary to what most GI docs claim, MC can be extremely painful, especially if a reaction involves a lot of entrapped gas and bloating. During these episodes, shooting pains are common for some MC patients. The pain can be so severe that it will bring them to their knees. This pain can be steady, or it can come in "waves".

I wonder if it's possible that you might have endometriosis. At least 10% of women of reproductive age in the US have endometriosis. Among women suffering from infertility, that number is estimated to be 40%. Statistically, those are relatively high odds, as far as the risk of developing a disease is concerned. Apparently, the only way it can be diagnosed with any certainty, is by laparoscopy. Endometriosis can certainly cause "shooting pains" during menses.

And yes, there is probably a link to MC. MC is an autoimmune disease, (as is endometriosis), and people with one autoimmune disease are much more likely than the general population to develop additional autoimmune issues, with passing time, especially if their symptoms go unresolved for relatively long periods. Most of us here have more than one autoimmune disease. For example, I have at least five that I am aware of.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by JJ »

Hi Shelly...welcome :wave: Jill
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Post by starfire »

:welcome: and I hope you will find some beneficial information here and then try asking questions. Lots of wonderful, helpful and informed people on this site. :grin:

Shirley
When the eagles are silent, the parrots begin to jabber"
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Post by mle_ii »

Hi Shelly,

Ok, I'm not male, so I can't speak on the female hormone issues. But I'm similar to you in that my symptoms are not what I would normally term Diarrhea. I get severe, sharp, intense pain in the area a few inches below my belly button. In fact I just discovered that it is most likely an inflamation of the lower portion of the colon and rectum, called proctitis. You can read more here: http://www.perskyfarms.com/phpBB2/viewtopic.php?t=4266

For me I found vast improvement by removing gluten from my diet, and even more improvement by avoiding dairy/soy and foods with a lot of fructose. Too much sugar/carbs in general seem to give me issues as well. I also take digestive enzymes, glutamine for gut healing and fish oil capsules. Recently I've added a probiotic, and Bromelain (sp) along with supplementing with an extra calcium/mag/zinc/D capsule.

So I'm pretty much well most of the time except when I accidently ingest some food that I know (or don't know yet) will give me problems. I'm guessing for me it's mostly cross contamination with gluten.

In fact just yesterday I had the same symptoms I normally get after eating the night before at a local Red Robin. They were so careful, but something must have snuck in, might have even been the cheese, that I thought I totally removed from the chicken breast. Could have been the caffiene in my diet coke or even some hidden gluten there.

Hope this helps,
Mike
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Post by Shelly »

Hi Everyone!

I would love to first say that you all are SO WELCOMING!!!! It's wonderful to have people in the world like you all. Typing isn't fun, and yet you took time out to write a quick hello, or some of you even more. In either case, what you have sent my way is a big hug, and I have never even met you. :grin:

Yes - I am in overwhelm mode! To be honest, when I found all of you here, I didn't even know that diet triggered this. (YIKES) Boy - I have alot to learn.

Thank you for all of your theories, which are very educated. I can tell you all do your homework and LIVE this. I appreciate every single one of them, and as I type I am filing them away in this presently confused brain of mine! :neutral:

I went to my GI on Tuesday, and he wants to do a flexible sigmoidoscopy on Monday. I explained all of my symptoms to him, and he didn't seem surprised or overly concerned. He mentioned the diet to me, and that also this time of year can trigger a relapse in symptoms. He said that I don't have to have nasal drainage etc. to have the allergies in the air effect me. Last year at this same exact time is when we discovered this. Before he puts me on medicine, he said he wants to be sure that this is what we are dealing with again. A part of me understands this as this disease is not fully understood by many. My other thoughts are that he maybe worried about the shooting pains???? He said that my period can definitely be a contributor to the sharp pains, and that the quick change in hormones can cause this too, as well as all the congestion in the area around that time. I do seem to have different symptoms than most. I'm glad to know others have had sharp pains as well! ( not glad for YOU per se, but glad to know I'm not crazy! ) I have found out from all of you that they vary greatly. I still feel pressure throughout the day on the rectum, and the C isn't as bad - no D still. I was a little crampy today - not eating much either. And feeling just "not myself"....

Endometrios! Yes, I have thought about that. We have three children and want one more- so I hope not. I really hope all this is related to MC. I don't want a whole list of things to deal with, and certainly not anything worse. That's my main concern and worry.

The adhesions to the colon sound plausible. I had kidney surgery in 2001 and I'm wondering about adhesions from that surgery causing this. I think a laproscopy may be in my future! Let's see what my GI says.

BTW - has anyone heard of how uncomfortable a flexible sigmoidoscopy is? I have the option of sedation or not. He said that most do not since it isn't a full colonoscopy. I'm an RN, and I can't imagine a scope ( even though it IS small) entering into an inflamed and irritated bowel anyway. Feeling is only on the outside of the colon, but still.....you all I know get what I'm saying! :)

Thanks again to each and everyone of you who took time out to write me......You have helped me already. I will read more on this site and research your suggestions. Any questions that come up -I'll direct to this board! THANKS!

Shelly :wink:
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Post by tex »

Hi Shelly,

I've had two sigmoidoscopies, (without sedation), and one colonoscopy, (with pain medication, but not sedation - IOW, I watched the exam on the monitor). I don't recall the sigmoidscopies as being particularly uncomfortable, but I can't recommend them as an enjoyable way to pass the time, either. Actually, they strike me as being somewhat pointless where MC is concerned. Odds are, the GI will wind up doing a colonoscopy anyway, so why do they always want to waste time, effort, and money, on a sigmoidscopy, first? (To say nothing of subjecting the patient to a lot of unnecessary inconvenience and discomfort). Presumably, it's just part of their regular routine. (Maybe the insurance companies influence the decisionmaking for this test progression).

The cleanout is the worst part of either exam, IMHO, and I think most everyone here will agree with that. As far as I could tell, the most painful part of the colonscopy was the proceedure of inflating the colon with air. I don't recall that happening with the sigmoidoscopies, but maybe I just wasn't paying attention.

Good luck with the proceedure on Monday, and hopefully no further intrusive tests will be necessary.

You're more than welcome,

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by Lucy »

Shelly,

I've never had the sig, but I've heard it described as pressure like unto a big bowel movement.

I don't know whether the inflammation will make it feel any different or not. Guess it depends on where the inflammation is.

Perhaps you could ask the doc if taking a Tylenol before hand would help. He might recommend something else if he knows that's of concern to you.

We'll want to know what he sees, of course.

Yours, Luce
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Post by starfire »

Hi Shelly,
I've had both a sig and colonoscopy. I agree with Wayne about the sig. Not fun but not painful either (although I think that could depend on the Dr.). When my Doc. was entering a "sensitive" area he told me to relax and breathe deeply. It worked just fine. I had no pain.

I've had 2 colonoscopies. The first was a horrible experience and extremely painful even though they had sedated me. The hospital where this occurred had "rules" about how much & what kind of medication was allowed. I did NOT return there. The second one was a breeze (once the cleanout was accomplished). I didn't remember a thing. What a difference.

You'll be fine, I'm sure. I doubt there are many places that still do things the way they did for my first one.

:hug: Shirley
When the eagles are silent, the parrots begin to jabber"
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Post by kate_ce1995 »

Hi Shelly,

Definately mention your previous surgery to your GI (I'm sure you have...they always ask those kinds of questions). Even it the adhesions aren't to the bowel, they can lead to lack of mobility in the pelvic region which could cause more pain during colon spasms.

If you have kids already, it doesn't rule endo in or out, but I'd say if you didn't have too much difficulty with the first 3 pregnancies, you are in good shape for another if that's what you want. It totally depends on where the disease is. Many women have endo, who don't know it because they don't have the hugely painful stuff, or the infertility issues.

I had a sigmo...(can't spell it). The worst was the last couple of seconds when they were as far as they go. Otherwise, it wasn't horrible. Not fun, but not horrible either. There are papers about MC not always being found in the sigmoid colon. But my doc told me without bleeding, the insurance wouldn't pay for a colonoscopy, so I had to do the sigmoid...and then following that afternoon a barium enema. Talk about NO fun. I'd have rather been drugged and had a colonoscopy.

Katy
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