When is a flare a flare??

fatbuster205 · Post by **fatbuster205** » Tue Oct 28, 2014 9:38 am

OK things have gone downhill for me resulting in being taken home by my boss yesterday after 16 x D plus severe RHS pain which is highly reminiscent of the impaction pain I had a couple of years back. So I am on 6mg budesonide, have simultaneous impaction on the RHS and D! But the pain is the worst. My boss is letting me work from home today and tomorrow and I have a Doc appointment tomorrow afternoon. I have not felt this rubbish for a long time but the pain is the worst - it literally had me in tears yesterday.

I have taken co-codomol today which is working and all I have had is black tea and chicken soup. I plan on having nothing else until at least the weekend to give my gut a break.

As I am truly fed up now I need some advise on what food to reintroduce, when and how to figure an elimination diet. My doc probably won't be happy but I need to do this because where I am today is not good. Interestingly I have only had 3 x D and 1 x BSC 4 - an improvement on yesterday. However, still got pain!

Anne

Post by **tex** » Tue Oct 28, 2014 11:53 am

Hi Anne,

I'm sorry to learn that you're still having serious symptoms. IMO if you have been using codeine frequently for the past few months then your primary problem may be due to the codeine. Narcotics are notorious for causing impaction problems for IBD patients, and the D is a natural response by the digestive system, to try to work around the blockage. Obviously a blockage can be very painful. Been there, done that, and it's never fun.

Hopefully the restrictive diet that you are following now will bring good results, but of course the surest way to design a safe diet for the long run is to begin with the EnteroLab test results.

Tex

fatbuster205 · Post by **fatbuster205** » Tue Oct 28, 2014 1:14 pm

I have had codeine prescribed but have deliberately not been taking it for precisely the reasons you give!

Things however got so bad yesterday I had no choice. I am a bit better this evening, although that is much down to taking painkillers. I am still particularly tender around the terminal ileum - always a hot spot with me and - as I have experienced pain there since I was 20 - not appendicitis! But it is not at all pleasant. However it is the gripping pain half way up the ascending which radiates to my back which is the killer for me and that is what I had so acutely yesterday. Accompanied by nauseous and even vomiting at times, it floors me! At least I have a very understanding boss who let me work from home today and I am doing the same tomorrow while hopefully the diet takes effect.
I read an earlier post describing their D as "shredded food"! I guess that to be Bristol Stool Chart 6? I seem to be having anything from BSC 3 to 7 in a day! Depending on the nature of number one movement, determines the rest of the day as a rule in that the first movement is usually the best and then things deteriorate! But at the moment I seem to be mainly 4, 5 and 6s! However I have one form not represented on the Chart which I describe as having the consistency of thick chocolate milk shake! Is this daily variability typical with others? At least I know some of you have the high frequency I sometimes achieve! Apologies for being so graphic!

Anne

Gabes-Apg · Post by **Gabes-Apg** » Tue Oct 28, 2014 1:39 pm

Anne
Wow - Your body is sending you a pretty strong message

you mentioned previously about work stress being a part of your triggers. Maybe the stress is having bigger impact than any food ingredient?

for majority of the past 5 years my poop has either been C (small pebbles or hard to pass motions) or D (MC mud the consistency of chocolate milk shake) - Only in the last 4 months since balancing histamine inflammation and correcting deficiencies have I done normal poop, a couple of times a week, picture perfect for a MC'er.
Your symptoms indicate major inflammation

Prior to the MC diagnosis, and strict diet, Stabbing pains, sweating, nausea about 30 mins prior to a motion were common. Sometimes i would have to pull over in the car, as the pain was so bad I could not drive. I had this for 20 years or more.
Since figuring out my major MC triggers, food, stress etc a major stabbing pain episode has not happened since.

I have not taken budenside so my inputs are limited, but based on the discussions here and the fluctuations in symptoms and your BM output, I would question if it is the right med for you. Especially while you are having contact with some major triggers whether they be food based with the work stress.

Until you eliminate / minimise what is causing the inflammation, progress will be limited. (Maybe not what you want to hear.)
Elimination diet, having the right foods and good gut healing will take months, 6 months or more. Can you minimise stress and other factors for this length of time?

Are you taking any supplements?

fatbuster205 · Post by **fatbuster205** » Tue Oct 28, 2014 2:55 pm

Hi Gabes,
Stress may well be a factor and as to reducing it, that will be hard as we are facing major cuts at work, redundancies etc. The news tonight just announced my Department is to cut it's budget by 13% next year! That said I am not particularly concerned about it because I have faced this kind of uncertainty before.

The only supplement I take is calcium.

I have just come across an interesting article which may well explain the RHS pain I get. It also (IMHO) proves Celiac Disease if there is villous shortening?

I'd be interested to know what you more knowledgeable people think!

http://www.annalsgastro.gr/index.php/an ... w/1004/742

"Recent reports [18] indicate that in some patients with collagenous and lymphocytic colitis, there is inflammation in the TI. These changes include surface epithelial lymphocytosis, villous shortening, and subepithelial collagen, but not the distortion, chronic inflammation, or pyloric gland metaplasia that predominate in abnormal TI biopsies. In the few cases of microscopic colitis with TI abnormalities, the diagnosis is based on the colonic biopsies."

Gabes-Apg · Post by **Gabes-Apg** » Tue Oct 28, 2014 3:06 pm

Villi damage from inflammation, that leads to leaky gut is well documented in all IBD's and IBS.
(Refer to the post in the past couple of days from Zizzle about evidence that IBS Is not pyschological.)

There can also be issues with the valve in that area, again due to ongoing inflammation.

Hence why until you eliminate/minimise what is causing the inflammation, and take the right things (foods/supps) that will help the gut heal, improvement will be limited/stalled.

IMO - you need supplements that will help reduce the inflammation, Vit D3, Magnesium, Vit C, Zinc.
you can use magnesium spray / epsom salt foot soaks to avoid D issues with having the Magnesium.

I went through my third redundancy earlier this year and 9 months later I am still unemployed. Its a tough job market.

fatbuster205 · Post by **fatbuster205** » Tue Oct 28, 2014 3:51 pm

So sorry about your situation - life can be tough and you have had your fair share of stress! I must seriously look into supplements!

My problem, aside from a bone headed instinct still that food cannot possibly be bad for you (HA!), I have always been brought up that if you eat a balanced diet you don't need supplements! The only reason I take calcium is because my GP insisted that if I was no dairy ... I have to confess to feeling fed up having had such a good stretch and to be experiencing the pain and other symptoms again is miserable!

I am going to seriously have to look into Enterolab but I would love to know if anyone from the UK has done it? I mean I was posting a parcel to my niece who lives in NY today, and at the Post Office here in Carrickfergus (tiny town) they always ask what is in the parcel (in this case English tea and chocolate)! Can you imagine what they would say ...???

Thanks for your response though! It is good to know that there are people who totally understand the misery this disease brings and the need to be able to be graphic - I don't think my co-workers would appreciate that somehow!

Anne

JFR · Post by **JFR** » Tue Oct 28, 2014 5:15 pm

Ann - I think its time for you to bite the bullet and figure out all your food intolerances and then stick to a very strict eating plan. It seems to me that you have been battling with yourself for a long time, not quite ready to commit completely to a plan, hoping that each small step you take will be sufficient and that no small indiscretion will sidetrack you, at least not for long. We each go at our own speed in this journey. This sounds like the right time for you to do whatever it will take to get things under control. From personal experience I can tell you that eating according to a strict plan and taking a few well-considered supplements is a great way to live when it means a life without constant sickness. We are all here to help you figure this out.

Jean

Gabes-Apg · Post by **Gabes-Apg** » Tue Oct 28, 2014 5:24 pm

Anne

I have always been brought up that if you eat a balanced diet you don't need supplements!

That was very very true, over 50 years ago, when our foods contained the nutrients and minerals our bodies need, and we didnt deplete the nutrients and minerals at the rapid rate our current lifestyle induces.
(ponder......what % of the population were treated for IBD's 50-75 years ago compared to now....... )

the foods we eat today DO NOT have the enough of the nutrients and minerals need. Even if you follow a very organic, fresh wholesome type eating plan.
Further, anyone with health issues namely inflammation and IBD's need way way more of certain nutrients and minerals just to avoid deficiency. There is no physical way we could eat and digest enough of the required foods to get the levels our bodies are constantly using.
While you are experiencing stressful situations, your adrenals and immune system are also chewing through the Vit D3, Magnesium, Vit C and Zinc.

Your body is seriously inflammed and is telling you this via the pain.

Post by **tex** » Tue Oct 28, 2014 7:32 pm

Anne,

The research article that you cited suggests that inflammation of the terminal ileum is somewhat rare with MC. That's incorrect. Actually, it's very likely that most (if not all) of us have inflammation of at least the terminal ileum as part of our MC inflammation pattern. Some researchers assume that the inflammation only extends into the terminal ileum (because that is as far as they can reach with a conventional colonoscope, and in many cases, not even the terminal ileum can be reached), but just because they cannot explore further into the ileum does not mean that inflammation does not exist there. It's very likely that the inflammation extends further into the ileum, and in some MC cases it's very possible that the entire small intestine may be inflamed. From pages 111–112 of the book:

And even though no mention of the small intestine is made in the diagnostic criteria for microscopic colitis, researchers have found that lymphocytic infiltration is frequently present in the small intestine of MC patients, and in some cases, villus damage is sufficient to justify a diagnosis of celiac disease. Even when the formal diagnostic criteria for celiac disease are not met, a significant number (over 10 %) of microscopic colitis patients show at least a Marsh 1 level of villus damage upon biopsy analysis of their small intestine.15

In fact, small intestinal involvement is quite common with MC.16 Other researchers have noted that the T helper cell type 1 mucosal cytokine response pattern exhibited by microscopic colitis is very similar to the response pattern of celiac disease.17 Most researchers have been unsure how to classify this type of information, since it implies non-celiac gluten sensitivity.18 Often, biopsy samples of the terminal ileum are taken during a colonoscopy exam, and upon examination under a microscope, those samples typically show lymphocytic infiltration for most patients who have MC.19

Koskela (2011) even noted that in general, the duodenum of patients with MC, excluding any patients who have celiac disease, have shorter villi than controls.19 Of course since no villi exist in the colon, villus atrophy cannot occur in the colon, but that is irrelevant to this comparison. According to Stewart et al. (2011) the association between celiac disease and microscopic colitis is so strong, that for someone diagnosed with either of the two diseases, the odds that they will also meet the diagnostic criteria of the other disease, has been shown to be approximately 50 times the level that would typically be expected in the general population.20

Other research shows that the correlation between MC and celiac disease may be much higher, as high as 70 times the probability that would normally be expected, when compared with the risk of someone in the general population developing microscopic colitis.21

Here are the references from that quote:

15. Simondi, D., Pellicano, R., Reggiani, S., Pallavicino, F., David, E., Sguazzini, C., . . . Astegiano, M. (2010). A retrospective study on a cohort of patients with lymphocytic colitis. Spanish Journal of Gastroenterology, 102(6), 381–384. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/20575599

16. Moayyedi, P., O'Mahony, S., Jackson, P., Lynch, D. A., Dixon, M. F., & Axon, A. T. (1997). Small intestine in lymphocytic and collagenous colitis: mucosal morphology, permeability, and secretory immunity to gliadin. Journal of Clinical Pathology, 50(6), 527–529. Retrieved from http://www.ncbi.nlm.nih.gov/pmc/articles/PMC500002/

17. Tagkalidis, P. P., Gibson, P. R., & Bhathal, P. S. (2007). Microscopic colitis demonstrates a T helper cell type 1 mucosal cytokine profile. Journal of Clinical Pathology, 60(4), 382–387. doi:10.1136/jcp.2005.036376

18. Vande Voort, J. L., Murray, J. A., Lahr, B. D., Van Dyke, C. T., Kroning, C. M., Moore, B., & Wu, T-T. (2009). Lymphocytic duodenosis and the spectrum of celiac disease. American Journal of Gastroenterology, 104(1), 142–148. doi:10.1038/ajg.2008.7

19. Koskela, R. (2011). Microscopic colitis: Clinical features and gastroduodenal and immunogenic findings. (Doctoral dissertation, University of Oulu). Retrieved from http://herkules.oulu.fi/isbn97895142941 ... 294150.pdf

20. Stewart, M., Andrews, C. N., Urbanski, S., Beck, P. L., & Storr, M. (2011). The association of coeliac disease and microscopic colitis: A large population-based study. Alimentary Pharmacology & Therapeutics, 33(12), 1340–1349. Retrieved from http://www.medscape.com/viewarticle/743 ... mp&spon=20

21. Green, P. H., Yang, J., Cheng, J., Lee, A. R., Harper, J. W., & Bhagat, G. (2009). An association between microscopic colitis and celiac disease. Clinical Gastroenterology and Hepatology, 7(11), 1210–1216. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/19631283

The pattern of bowel movements that you mentioned is very common with MC when at least partial healing has occurred. During the night the colon has time to work normally, and it manages to remove water from the lumen (because it has an extended period of time with no BMs), and so the first one may be formed. But if/when subsequent BMs are passed, not enough time has elapsed to allow for adequate water removal, so they become progressively less formed, due to increasing water retention.

I can't help but wonder if stress might play a role in the subsequent BMS — stress that is absent during sleep. And stress can also cause pain (which can cause increased stress, leading to a self-perpetuating problem).

Tex

fatbuster205 · Post by **fatbuster205** » Wed Oct 29, 2014 3:35 am

Gabes-Apg wrote: While you are experiencing stressful situations, your adrenals and immune system are also chewing through the Vit D3, Magnesium, Vit C and Zinc.

Your body is seriously inflammed and is telling you this via the pain.

I hear you Gabes and will stock up today on the said supplements!

And thanks Tex for confirming (actually reminding me - I knew the logic came from somewhere - oh yeah - your book!!!!) Clearly I need to reread for the 4th time!

It is great to be able to get feedback and I really do hear you guys even if I sometimes appear to not want to listen.

Anne

fatbuster205 · Post by **fatbuster205** » Wed Oct 29, 2014 3:48 am

And half my message disappeared! Don't know what happened there!

Jean, I may appear stubborn and unaccepting but actually I am the reverse. I think I just lack the confidence to really stand against what my doctors think. I have tried to educate them and demonstrate through sound evidence that there is more to this disease than perhaps they realise but it is an uneven relationship! I mean I don't get to stick a camera up their butts!! But I have made significant changes already and I had pretty two years of good health until this flare.

I have eaten nothing other than homemade chicken soup (chicken breast x 3, carrots x 2, onions x 2, fresh herbs from my garden and GF/DF vegetable stock), black Earl Grey tea (Twinnings of course) and water since Monday night! Having had the 16 x D on Monday; 1 x D and 2 tiny, slightly formed BMs yesterday, I am waiting for things to get moving again today. I have wind shifting, so the gut is moving. I don't intend eating anything else except some rice added to the soup until things have calmed down.

I just find it so frustrating - as I know many of you do - when you think you are in control and then bang everything goes pear shaped again!

Anne

nerdhume · Post by **nerdhume** » Wed Oct 29, 2014 4:51 am

Anne,
I was dx MC from biopsies during a colonoscopy. Then dx UC from a genetic blood test. I had no noticeable inflammation during the colonoscopy. I have always had TI pain with nausea, etc. This is very common with UC. Also I have had pain that seems to radiate through my chest and back. I think this is just very severe heartburn and reflux. I am fortunate that my pain usually only lasts for a few minutes and leads me to believe it is food moving through the valves in both locations.
Just saying this seems to be more common with UC and it's possible to have both UC and MC.

JFR · Post by **JFR** » Wed Oct 29, 2014 6:35 am

fatbuster205 wrote:
Jean, I may appear stubborn and unaccepting but actually I am the reverse. I think I just lack the confidence to really stand against what my doctors think. I have tried to educate them and demonstrate through sound evidence that there is more to this disease than perhaps they realise but it is an uneven relationship! I mean I don't get to stick a camera up their butts!! But I have made significant changes already and I had pretty two years of good health until this flare.

Anne

I hope I didn't offend you Anne. That certainly was not my intent. The relationship with a doctor is uneven. I am lucky that I grew up with a doctor as a father which made me rather immune to the doctor as all knowing or the doctor who must be obeyed attitude. Beyond having found this forum, I would say that what has been most important to my healing is to know enough to go against doctor's advice when it contradicts what I have learned, either intellectually or experientially. Your the one who is suffering, Anne, not the doctor.

Be careful with the supplements, especially since you are flaring. Start slowly, especially with Vitamin C and with magnesium until you see how your body reacts.

Jean

Hopeful · Post by **Hopeful** » Wed Oct 29, 2014 7:25 am

And just to add to the discussion on low-impact diets, onions always give me gas and bloating. I see that you are eating them, so you might try eliminating those as well.
Good luck to you! The stress from work can be unrelenting. Sometimes we're just so "used to it" that we take it for granted and don't realize the damage that it's causing. I wish that I could offer some solutions in that department, but, alas, no...