Alternating diarrhea and constipation

Chipilonadog · Post by **Chipilonadog** » Sun Apr 20, 2014 10:31 am

Hello all...I would imagine that I am asking a question a question that has been asked and answered more than once, but I am going to ask again at the risk of being repetitive. Quick background...I was diagnosed with collagenous colitis 17 years ago. Fast forward to this past November, when out of the blue, I was hit with the absolutely worst diarrhea I had ever experienced...all day and all night 15-30 times in a 24 hour period. I had it all-fecal incontinence, nocturnal diarrhea, abdominal discomfort, nausea, and a 40 pound weight loss. I am a 5'6 female and weigh 103 lbs. Ok....you get the picture. On with the question. How many of you have alternating diarrhea and constipation. Do your doctors tell you that constipation is not a symptom of m/c l/c c/c? To what do they attribute the constipation? I have seen Tex's posts, in which he states that he has c- dominant colitis. I assume that this diagnosis has been confirmed by biopsies.I ask these questions because I do not want to be told one more time that my constipation is IBS. It makes me want to lie to the GI doc, because I certainly am not ready to go back to work. I would appreciate your input.

Post by **tex** » Sun Apr 20, 2014 11:17 am

Hi,

I believe that you misinterpreted my posts. I had predominant constipation (C) virtually all of my life, before my acute digestive symptoms began. When my symptoms suddenly changed, I had uncontrollable watery diarrhea (WD). After a few weeks of that, I finally caved in and went to see a doctor. For several months, I went through a long series of tests that culminated with a colonoscopy. For most of that time, I had alternating D and C, and the alternating D and C continued for a couple of years afterward, until I figured out that food sensitivities were perpetuating the inflammation that was causing all my symptoms. After correcting my diet, and allowing some healing time, my symptoms resolved.

Nope — no official diagnosis. The GI doc put me through a lot of tests, but since he was clueless, he never even tested me for celiac disease, let alone take biopsy samples during the colonoscopy. I even pointed out the areas of inflammation in my colon that were displayed on the monitor during the procedure, and asked him what they meant. He was clueless (and so was I, at the time), and mumbled something about them possibly being due to an old infection.

I never went back.

There is plenty of evidence recorded in the literature that MC is often associated not only with alternating D and C, but with C alone in some cases. For example, here's a quote from reference number 18, noted on page 8 in the book:

Fifty-three patients had a diagnosis of collagenous or LC n the pathology database. All patients’ biopsies were taken by colonoscopy because of abdominal pain and/or stool problems (diarrhea or constipation) or weight loss, and endoscopic evaluation demonstrated normal findings (the macroscopic picture was normal). Constipation was found in 23 patients (43.39%, 20 CC and 3 LC patients) and diarrhea in 30 patients (56.61%, 26 CC and 4 LC patients).

Microscopic colitis: A retrospective study of clinical presentation in 53 patients

The red emphasis is mine, of course. The point is, most doctors don't have a clue, when they tell patients that C is not associated with MC.

Tex

JLH · Post by **JLH** » Sun Apr 20, 2014 12:28 pm

My GI asked if I had C, so I think she knows.

Julie · Post by **Julie** » Sun Apr 20, 2014 1:10 pm

Hi,

I used to have C and D. I always had 3 to 7 days D, and then the following days , I had C, ... It's very annoying when people tell you that this is IBS. Trust me, it's not.

My GI believes me. He says that it's normal to have both. I had to make a lot of changes in my diet (Glutenfree, dairy free, egg free, low fibers and low fat). I'm doing so much better now, thanks to the advice that I found here and the advice that I got from my doc. I rarely have D or C anymore and I'm starting to feel like a normal person. My point is: it gets better. My symptoms were similar to Tex's symptoms. I was lucky enough to have found a specialist who believed me and never gave up on me.

Don't be afraid to tell the truth to your GI. I have seen 6 specialists until the last one finally believed me and tested me properly, so don't be afraid to see another doctor if you think that you are being mistreated. Good luck!

Julie

Chrisdat · Post by **Chrisdat** » Sun Apr 20, 2014 2:19 pm

I was about to ask the same question. I started Endicort 5 days ago. No BM for 4 days. Had only D for 3 months previous, so this is quite a change.

I take 3, 3 MG. in the AM. Should I skip till I have BM? And then go to 2, 3 MG. Or is there something else?

One thing I wondered, could it be that after months of gut emptying D my bowels, simply need days and days to normalize? I don't want to be impatient. I am having some cramping and nausea, I'd really like to have a bowel movement. Can't believe I just said that:)

Post by **tex** » Sun Apr 20, 2014 3:04 pm

Hi Chris,

Most members here consider the advent of C to mean that it's time to reduce the Entocort dosage. A few of us are much more sensitive to it than others, and for those, the regular dose is too much to begin with. And for those who have C-predominant symptoms, budesonide is not a very good choice, because it tends to make the C worse.

Tex

Chrisdat · Post by **Chrisdat** » Sun Apr 20, 2014 3:17 pm

Tex, based on your reply I think I'll just skip Endicort until BM, and then resume with smaller dose. Probably 6 MG. a day (reduction from 9), and see if I can avoid D and C. If not, I'll try the skip and reduce again.

Hope I'm figuring this out right.

BTW, I'm on page 67 of your book. So incredibly helpful. Your explanation of secretory D vs. osmotic D helped explain so many things. I couldn't understand the high volume of D when I was eating practically nothing. I was so dehydrated, yet all the Dr. said, was, "your not drinking enough". Thanks so much for your book.

Post by **tex** » Sun Apr 20, 2014 5:07 pm

Chriis wrote:Tex, based on your reply I think I'll just skip Endicort until BM, and then resume with smaller dose. Probably 6 MG. a day (reduction from 9), and see if I can avoid D and C. If not, I'll try the skip and reduce again.

Hope I'm figuring this out right.

That's what I would probably do if I were in that situation. If you had been using Entocort for 6 months or longer, it would be risky to stop using it cold turkey (because of the risk of withdrawal symptoms due to adrenal suppression), but since you've been using it for such a short time, there's no risk of any repercussions of that sort.

I appreciate the kind remarks about the book.

You're most welcome.

Tex

Gabes-Apg · Post by **Gabes-Apg** » Sun Apr 20, 2014 5:21 pm

I am now C dominate. if the BM is not C, it is MC mud. That has become 'my normal' for the past couple of years

In november, with some big ticket stress items occurring, caused big C issues, anal fissures etc.
It takes a while to figure out the right combo of ingredients/supplements/etc etc to achieve the best balance for a near healthy digestion process.

Chipilonadog · Post by **Chipilonadog** » Sun Apr 20, 2014 7:15 pm

Thanks for the input

I imagine that all of you have experienced the frustration that I have been feeling as of late.

Tex-I apologize if I mis-interpreted your posts. Perhaps I should be paying closer attention to what I read. I appreciate all the time and effort that you obviously spend when addressing fellow sufferer's concerns.

Julie-thanks for your words of encouragement. In your post, you mention having been tested "properly." Question-how do I know if all the proper tests have been run? Are you talking specifically about food allergy testing? I can't imagine limiting my food choices more than I already have. I am a pescatarian and have been one for many, many years. I do, however, need to do some research about food choices that would be beneficial to me.

Again, thanks for your input, everyone.

Chipilonadog

carolm · Post by **carolm** » Sun Apr 20, 2014 8:41 pm

Just to reinforce what Tex said, I am C prominent and when I was taking Entocort once my C became worse and I started having daily cramps, it was sign to reduce the dosage (for me this was after I had been on it a couple of months). And you can definitely be C prominent and have LC. My biopsies were conclusive-- there was no doubt. I think C is caused by sluggish, slow gut motility. IMO.

Carol

Leah · Post by **Leah** » Sun Apr 20, 2014 9:35 pm

Pescatarian… so you eat fish, fruit , veggies, and grains? Just know that the four biggest culprits are gluten, dairy, soy, and eggs. Also, eating fiber foods like RAW fruits and veggies, legumes and beans can really make things bad. You have probably figured that spicy and acid food can be hard also. While trying heal, it's beat to eat as simply and freshly as possible while eliminating foods that could be causing problems. When your symptoms are better, you test each one back in one at a time, but true healing takes time…. and protein.

Leah

Julie · Post by **Julie** » Mon Apr 21, 2014 2:22 am

Hi Chipilonadog,

I've been tested for a lot of things: food allergies, 3 colonoscopies where the doc always took biopsies, ... I'll put it this way: I was hospitalized for 5 days, just to do all the scans, tests, ...
I even got nuclear photos, so that the doc could see how my organs worked. He put me on a lot of different kinds of meds.
He did at least 3 colonoscopies, becaus he was so certain that there was something wrong with me. He did bloodtests + stooltests (everyday).

Then suddenly, there it was: my diagnosis: LC (thanks to the last colonoscopy)

He told me that I would have to be careful with what I eat and drink. He started me on entocort 9 mg and I started to follow a restricted diet (found here). It took a while for it to kick in, but it worked for me. When I had to stop entocort, I had to wean it off. The symptoms that you could experience then, are withdrawal symptoms.

Once I finally got rid of entocord (it took a year!), I was feeling a lot better. Cortisone affects your body too, I felt that. He then started Bion Transit (Probiotic), to protect my bowels. This works well for me.

So as you can see, it was a journey that took at least 2 years of my life, but it was totally worth it.

The only meds I'm currently taking are: lititcan (I had reflux --> nothing to do with LC), Esomeprazol (for the reflux) and bion transit.

This is what I didn't eat/ drink during these 2 horrible years:

- no gluten
- no dairy
- no raw veggies
- no fruit
- no eggs
- not more than 2 cups of coffee a day
- everything had to be well cooked!
- no fried stuff
- no fat food
I know that it seems horrid, but it worked wonders for me. I'm doing much better now, so I'm starting to eat a little bit of fruit and more veggies.

Hope that this info will help you. Good luck! You're in my thoughts.

Julie

Chrisdat · Post by **Chrisdat** » Mon Apr 21, 2014 6:41 am

Julie and all of you experiencing some success. Thank you! I know it's tempting to drop off this support board, as your life moves on. But thank you for checking in occasionally and sharing your path to healing.

For me, at the very beginning of my journey with LC, it is so good to realize it may take years, but substantial healing, is possible. Thanks.

Chris

Chipilonadog · Post by **Chipilonadog** » Mon Apr 21, 2014 11:57 am

Thank you all once again for your input.

Julie-this information is extremely helpful; the diet that you mention would not be too big of a leap for me. My only concern is that I would lose even more weight. For the time being it seems as though my weight has stabilized at 103. Any suggestions?