My story of LC diagnosis and treatment so far - newbie intro

[ozgal]

Hi all

I’m a 37 year old female in Australia, diagnosed with Lymphocytic Colitis in March 2013.

I was told LC was a rare condition and didn’t receive much information from my GI so was relieved to find this forum when researching on the web. Thanks for the great resource and offer of a supportive community!

When I reflect on my health growing up, I’ve always been susceptible to allergies and sensitivities. From a toddler through to 21 years of age, I had an average 3 episodes per year of hives covering my whole body. The cause was never found but ceased when I moved out of home. I’m allergic to bee-stings, have had mild asthma since age 8, seasonal hayfever and 3-4 yearly diarrhea episodes since a teen.

Being health conscious, I adopted a vegetarian diet in my late twenties. I was expecting to jump out of bed in the mornings with vigor, but the introduction of a diet prominent in whole grains, muesli, fruit and soy products caused a slow deterioration to my health. I developed lethargy, increased hayfever episodes and worst of all, chronic and excessive flatulence and bloating.

I spent a lot of time researching but didn’t put two and two together until I discovered the Paleo diet in July 2012 (I didn’t see the connection with whole grains as I was told that I this was very healthy for me). Within 2 weeks of trialing a Paleo diet (i.e. eliminating all grains and mock soy food products) my flatulence and bloating issues disappeared and I had an increase in energy! I thought my digestive problems were behind me.

However, in August 2012, I strayed from the Paleo path and ate a chicken Panini at a food court. The next day I woke up with a severe case of D (liquid and green in color) and abdominal pain. I visited my PCP after a couple of days as my condition was not improving. My PCP ordered a stool test but gave me a prescription of anti-parasite and antibiotics without waiting for the stool tests to come back (one was doxycycline but I can’t remember the name of the other). A few days in, the drugs had no effect on my condition whatsoever so I returned miserable to my PCP who looked at my stool test results and said I had dientamoeba fragilis. I was prescribed another drug called flagyl which cleared up my symptoms within 2 days.

Since the initial flagyl treatment, my symptoms started slowly coming back and by January 2013 I was frequenting the toilet 6-7 times a day (generally from 5AM to 10AM) with abdominal cramping, stitch-like pain in the left hand side of my abdomen which prevented me from walking fast, fatigue and rapid weight loss (I lost 15 kg/33 pounds at the rate of 1 kg/2 pounds a week). I didn’t have liquid green D like the initial episode but my stools were very soft and I was starting to experience incontinence issues.

I had visited my PCP a number of times since the initial flagyl treatment to report my ongoing symptoms. My PCP thought I was suffering anxiety and wanted to put me on Prozac (which I didn’t go on). I had another stool test done but it came back clear. I also had a full blood test including a check for celiac but this also came back within ‘normal boundaries.’

I visited a naturopath who said I had a parasite infection. She worked her “kinesiology magic” by asking me to hold a bottle of supplements in one arm against my chest while she placed pressure on my other outstretched arm to determine the amounts to prescribe me! Although skeptical of her approach, I was desperate and walked out with $500 worth of supplements (anti-parasitic, protein powder, slippery elm etc). I was directed to follow a diet of quinoa, millet, almond milk, rice milk and starchy foods.

My symptoms were progressively getting worse including a gurgling/growling stomach and frequent urination. I started pouring Metamucil down my throat in an attempt to control the incontinence. My PCP was stumped so referred me a GI.

The GI booked me in for a gastroscopy and colonoscopy, CT scan, more blood and stool tests. The CT scan, blood and stool tests didn’t show anything adverse. The gastroscopy came back with a slightly inflamed esophagus (which he said was likely caused by acid reflux). The colonoscopy biopsy results came back with LC.

I was prescribed a 2 month course of budesonide (entocort) 9mg daily for 4 weeks, 6mg daily for 2 weeks and 3mg daily for 2 weeks. When asked about diet he suggested a low fibre, low fat diet.

I’m grateful to my supportive husband who discovered the SCD diet.

I adopted the SCD diet along with the course of budesonide and met with positive results within 2 weeks. My BM reduced to 1-2 times a day and ranged from a loose consistency to solid motions. My incontinence had gone too! I also started low impact exercise like brisk walking and Pilates which has helped.

I continued the SCD diet after weaning off the budesonide but 9 weeks after my last dose of 3mg, my symptoms started returning (gurgling/growling, frequent urination, frequent BM, D with occasional incontinence). Yesterday I had resorted to wearing adult diapers again and carrying a bag of wet wipes, change of clothing and Imodium around with me – arrggh!

Today I visited my GI who was disappointed my symptoms had returned but could offer no other advice or information. He cannot give me an explanation for my frequent urination and has ordered another round of blood and stool tests. He has re-prescribed my original course of budesonide (9mg daily for 4 weeks, 6mg daily for 2 weeks and 3mg daily for 2 weeks) with a checkup in 3 weeks’ time.
Although I’ve met with some success with the SCD diet, the reading I’ve done on these forums so far indicate I should be eliminating not only gluten but casein, histamine, eggs and honey so I’m going to start that today too. Does anyone know if there is an Enterolab test equivalent in Australia?

I’m worried about being on budesonide for a long period of time and was hoping diet alone would keep it at bay. I’m realizing I’m still a newbie on this journey of gut healing (I wish it were as simple as healing a broken bone)!

Apologies for the long post and thanks for your time if you’ve stayed with me this far!

Any advice or words of wisdom is appreciated.

thanks

Helen

[Zizzle]

Wow, Helen, what a journey!! Welcome! You've come to the right place for people who "get it" unlike your PCP and GI docs!!

This pisses me off to no end:

I had visited my PCP a number of times since the initial flagyl treatment to report my ongoing symptoms. My PCP thought I was suffering anxiety and wanted to put me on Prozac (which I didn’t go on).

Why must they blame the patient when they've reached the end of their understanding of a condition!?! GRR!!! Not to mention antidepressants can cause MC!:shock:

I do think eliminating dairy should be next for you. I haven't heard about a need to eliminate honey. You might need to be wary of some of the GF grains. Better to go back to paleo and eat tubers for your starches (sweet potato, regular potato etc)

[dfpowell]

Helen,

Welcome!

I am going to chime in here because I am currently following the SCD-dairy free, and limiting eggs to baking almond bread. I limit vegetables to well cooked and only eat a small amount of fruit. Over the past 5 years, I have tried all different diet combinations including the regular SCD. I did the Enterolab test and found out foods to avoid, however, I am limiting far more foods than was recommended. I have tried all of the different medications, but had mixed results because I did not realize how important the GF, DF diet changes were at that time. Most recently I have followed the Pepto Bismol plan and along with a strict diet I have gotten good results. There is a lot of good information on this website, I have found keeping a notebook helps me keep it all organized while I am developing my plan. Also, a journal of your diet and symptoms helps you identify triggers. It is a journey, but there is comfort in finding others that are on that path!

[tex]

Hi Helen,

Welcome to our internet family. You've had a rough journey, but it sort of parallels what many of us have been through before we have finally learned enough about diet and health to be able to develop our own custom treatment program. You are very close to reaching your goal of stable remission, IMO. As Zizzle pointed out, the dairy products in the SCD are the equivalent of it's Achilles Heel, as far as treating MC is concerned. Without dairy, the SCD is essentially the paleo diet.

In a few of the most severe cases, truly safe foods are so few that a very low maintenance dosage of budesonide may be necessary in order to maintain full control. By very low, I mean 1 capsule every other day, or every third day (whatever minimum dose will still maintain remission). Even at 1 capsule per day, budesonide should cause very little long-term bone or adrenal risk, because research shows that unlike the other corticosteroids, less than 20 % of it is absorbed in the bloodstream, so the risk of systemic damage is low. Hopefully that won't be necessary in your case, but it can always be utilized as a last resort.

You might call EnteroLab to double check, but I'm pretty sure that you can send a sample from Australia if you wish to do so. One of our members in Hong Kong did that a few years ago. Outside of it being held up in Customs in Alaska for a day or so for some unknown reason (shame on them), the shipment went smoothly, and his test results were very helpful.

Incidentally, the frequent urination problem that you mentioned is a side effect of MC that a few of us experience when we are reacting. It turns out that the pattern of inflammation in the bladder, associated with interstitial cystitis, is the same pattern used to diagnose LC. So my theory is that for some of us, when our MC/LC is active, the inflammation can extend to the bladder (and various other organs, as well). I had that same symptom, back when I was reacting.

Again, welcome aboard, and please feel free to ask anything.

Tex (Wayne)

[Leah]

Welcome helen. I don't have time right now to say what i'd like to, but please read the post of the other new member.
See you later
Leah

[Leah]

Hi again. What I wanted to say is that it seems ( from people on this forum) that when one takes Entocort for a fairly short period of time and then stops, the likelihood of relapse is very high. it sounds like you are a perfect example of this. When you take Entocort, your body tells you when it's time to wean down to a lower dose ( a little constipation). The same goes for when it's time to wean off. While I drastically changed my diet, I was on 9mg. a day for one month, 6 mg. for the next month, 3 mg. for the next TWO months, and the final two months was spent slowly weaning off. While I was on the one pill a day dose was when I really fine tuned the diet because I could tell what I was reacting to more.

yes, the big four culprits are gluten, soy, dairy, and eggs ( although I can eat eggs). Then while you are healing , you might also want to avoid RAW fruits and veggies, too much sugar, acid foods like tomato, fiber foods like beans and legumes, and caffeine. These foods are very rough on your system and eating them can put off reaching remission. when you ahve healed, you can test these foods back in one at a time. I have been able to add many back in ( but still have problems with fruit and sugar.

Tex has written a book. if you click on the picture of it in the upper right hand corner of this page, it takes you to Amazon. it's full of great info.

Take Care and good luck
Leah

[ozgal]

Thanks everyone for your replies!

Zizzle, yes the PCP visits started making me paranoid and thinking maybe it was all in my head. I'm glad I persisted and got the correct diagnosis eventually!

I've just eliminated dairy from my diet plus eggs so I'll see how that goes. The only fruit I'm eating is very ripe bananas. Vegetables are well cooked.

Thanks for your recommendation of keeping a food diary Donna. I'm finding that I eat the same sorts of foods but it's not always obvious what the triggers are.

I also find that my stress levels directly affect my condition so I'm starting to go to bed earlier and also plan to transition out of my current high-stress job into a more suitable role.

Tex, your explanation around frequent urination really helps (my GI's explanation yesterday was that he thinks I may be pregnant hahahah). I'll contact Enterolab and see if they can assist.

I'll be buying the book today, thanks Leah! So much reading to do

Helen

[carolm]

HI Helen (and all),

I am always exasperated when one of us writes 'The doctor says the problem is that I have anxiety" . Well... hell yes Dr. Genius, I do have anxiety!! We go from healthy to severely sick seemingly overnight. We have incontinence, uncontrollable diarrhea, we're dizzy, foggy, nauseated, itchy, and achy. We drive when we are lightheaded, worry we'll embarrass ourselves in one of a dozen ways, and find our social lives suddenly restricted. Nothing is the same and then we are faced with doctors who are clueless. And they wonder if anxiety might be a problem?

How is it that one of us hasn't blurted this out to our Dr?

Seems to me that the normal, sane reaction would be to have anxiety under these circumstances. (sigh).

Helen, I'm glad that you passed on the Prozac and pursued the diet changes. Donna is right about a food log helping you find the patterns and reactions. My GI even liked to look at my log book and it was helpful when I needed to have some evidence to show her a pattern of symptoms I was having. You will find a wealth of information here. Welcome to our group.

Carol

[ozgal]

Hi Carol

Thanks for your reply! It's great to find so many people who understand but sad and frustrating we're all dealing with this condition.

I've spent many months feeling anxious and embarrassed. When my LC is active, it's a real nightmare getting into work in one piece. I have a 35 min train trip in the morning which just happens to coincide with the time my BMs are frequent so I've had to get on and off multiple times to make pit stops (doubling the commute). I've tried soft soothing music and deep breathing to try to calm myself but is not effective.

And of course, it's been a real drain on my husband too. He has been scared and depressed over the months in his efforts to support me Any tips for how your family members have coped??

I've been on the second round of budesonide for 2 days now and it's exhausting. I'm sleeping a lot at the moment getting used to having it in my system again.

How long do relapses typically last for assuming you're following the correct diet? Do they get milder over time? Or does it vary from person to person?

I've just ordered Tex's book from Amazon and am looking forward to reading it.

Helen

[tex]

Helen,

You're fortunate that your husband is so supportive. Every situation is somewhat different, of course, but some of us find that our spouses and family members have more of a "get-over-it-so-that-we-can-get-on-with-our-lives" attitude. Some seem to try to ignore it, maybe because they feel powerless to help, and that makes them very uncomfortable. But many are very supportive and are even willing to change their own diet in order to get all traces of gluten out of the house, if that's what is needed. Whatever the situation, this disease is definitely hard on everyone in the family, because it affects their lives so profoundly, also.

Relapse severity and duration varies over a huge range, but in general, the more we heal, the less severe any reaction due to an accidental exposure to a problem food will be, and the faster it will resolve. After we have been in stable remission for a while, accidental reactions usually don't last for more than 2 or 3 days, and they are far less severe than when we were at the height of our original flare.

Most of us who have been in remission for several years or longer find that such an exposure will typically lead to a bit of bloating and discomfort for maybe half a day. Depending on the "dosage" of the exposure, we may or may not have one or two episodes of D (not watery D), and the next day we will probably be fine (as long as we stay away from whatever caused the reaction).

In cases where remission is less stable (as for example in cases where individuals somewhat regularly "push the envelope" to maybe cheat a bit on their diet, or continue to eat foods that are only "semi-safe"), there's always a risk that a flare may be much more severe, and last much longer, possibly requiring virtually starting over on a treatment program, in order to regain control. Yes, this can vary a lot on an individual basis. The more we heal, and the safer our diet, the less severe any accidental exposure reactions will be, and the sooner they will resolve.

I hope you find the book to be very helpful. I'm not sure how long it will take to arrive in Oz, but if you would like a digital copy so that you can get a head start on reading before the printed copy arrives, I would be happy to email you a digital file that you can load into your digital reader. Or if you don't have a digital reader, I can send you a PDF file that you can read on a PC, using Adobe Reader. If you would like to try that, just let me know which type of reader you want to use, (because various brands of devices use different formats).

Tex

[Doug]

Hello Helen

Stomach grinding is very common for most, but unlike most I also have an increase in urination. Just curious how many times a day for you, for me its like 10 to 12. Interstitial Crystitis could be the cause, but from what I read it is more serve than that 10-12 it is upwards of 50. a day.


Doug

[Leah]

Hi Helen. Sometimes when you stop the Budesonide and then re-start it, it may take longer to work. Hang in there.

My husband has been so good with all of this, but I got better fairly quickly taking the drug, so my mood was better.... which made him feel less stressed out about it all. He hasn't given up gluten, but is willing to eat anything I put in front of him for dinner without complaint. We also stopped eating out for a good six months. He was great about that and we got very creative with packing picnics to get out. He still resists eating pizza in front of me because he knows that it is one thing I sorely miss :)

Try to eat as simply as you can.
Feel better soon
Leah

[carolm]

Helen, My experience mimics what Tex said about relapses being less severe and shorter in duration the more I heal. However sticking to the diet and eliminating all your reactive foods is absolutely essential. Obviously the quicker you heal the quicker you get more of your life back.

As far as how my family copes, they have watched me but let me 'lead' and tell them what I needed. They've encouraged me to pace myself and have been okay when I didn't feel like doing something. For example my daughter attends college in Kansas City. When I was still recovering and taking Entocort we needed to help my daughter move into her first apartment. I felt weak and lightheaded but I was not going to miss this. When I got tired I laid down and they finished setting things up. When it was time for dinner they opted for take out because I wasn't up to going but take out meant we could all still be together and they were happy with that. They seem to be fine with whatever the alternate plans are as long as I am okay. They just want me to be okay and to get better. They have watched me research, do food challenges, get tests done and eat my limited diet in an effort to get into remission. One day my husband asked 'what can I do to be supportive?" and my response was "be willing to drive me to see our daughter or my family" which was timely because at the time we were on our way to see my brothers 4 hours away. He laughed and said "of course. That's it?" Yes, that was it. (I think he was relieved). That was and sometimes still is the best support I can have. So letting them know we are working to heal ourselves and we will tell them what we need, maybe the best we can do.

good luck,
Carol

[ozgal]

Hi all

It's really good to hear about the support you're getting from your families! You're right, support doesn't have to be anything more than just being there.

My husband relaxes when he sees that I'm doing what I can to help myself. He has also helped out with lots of research, encouraged me to join this forum and adopted the SCD diet (he adds other foods to supplement himself to help with variety). We buy from our local farmers market as much as possible and all our meals are made from scratch bar the occasional canned fish in springwater so that's been a real learning curve (one which I'm enjoying as the food tastes so much better than processed foods). I'm going to try to do the Enterolab test - failing that an elimination diet as I suspect even though I'm eating GF and just recently DF there's other suspect foods in my diet.

We've been really frustrated and let down with the lack of knowledge displayed from the medical system (after diagnosis I was just given a prescription i.e. no reading material or dietary advice forthcoming). We've also been told repetitively that diet has nothing to do with LC! Do you think it's worthwhile trying to find a PCP/GI who does have more knowledge? Sadly, judging by the reading I've done so far on this forum, I'm thinking finding an open-minded PCP/GI is like winning the lottery.

Doug, my urination is 10-12 times per day too. No associated pain, just frequent urination.

Thanks all for sharing your experiences on relapses. It has given me more clarity.

Tex, thanks so much for your offer of a digital file! Amazon estimated the book to arrive in 3 weeks so I'd really appreciate starting the reading now and adjusting my diet/lifestyle to help with healing. Could you please email me a PDF file? Much appreciated

Helen

[Gabes-Apg]

Hello Helen

welcome to the group (well.... its like a cool bunch of people that you can call family) - but I am sorry that you were diagnosed and had to find us!

you mentioned train commute, are you Sydney or Melbourne based??
I am in Toowoomba in Qld (but have lived in hunter valley, sydney, canberra, brisbane)

Sadly, judging by the reading I've done so far on this forum, I'm thinking finding an open-minded PCP/GI is like winning the lottery.

Finding a good 'wholistic thinking' medical and/or natural practitioner is like winning the lottery! I have had 12 different GP's since my Dx and only one of them sort of got the wholistic impact of LC. the rest deny diet is linked to symptom relief and healing, and that the symptoms such as joint pain and/or foggy brain etc are linked. None of them will acknowledge the benefit of high doses of Vit D3.
the issue in Aus, same as USA, the medical system is not geared up to support people with chronic whole of body type conditions.
your GI will only look at digestion related symptoms
anything else is 'someone else's speciality'

Even some of your natural practitioners are not informed enough about MC. MC is not the same as other IBD's and does not respond to treatment protocols like Crohns or Celiac.

Well informed self management is the key to success. Don't alienate your GP, we still need them. moreso research and figure out what options are best for you.
eg: I take high doses of Vit D3, and have not had the flu vaccine since being Dx'd. considering how many sick people cough on me at work these past months! I have managed not to get any cold or flu symptoms!

it takes a few months to digest all the info on here! take your time, keeping the journal is a fantastic idea. it will get better! it just takes a bit of time and patience, and diligent effort! which is all worth it!

Take care
Gabes