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Let's Talk About Crohn's Disease.. And What This Diagnosis Means

6/6/2017

21 Comments

 
I wrote this post in early May, when I got my news. However, I didn't post it then because I didn't want this to take attention away from Lyme Awareness Month. Since it's writing some things have changed; I continued more testing, more investigation & will write a follow up soon as my body allows.
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Well, here we are. It's been a couple of days since I finally got my answer, and yet it all still feels really fresh. I had hoped a few days time would give me some clarity to write this post, but right now I'm not there yet. I find myself bouncing around between a feeling of relief and understanding & back to a feeling of frustration and anger. At first I thought I would hold off on writing this post until the dust settled, but truthfully I'm not sure when that will be. I can't rush my feelings, but I also don't want to. I don't want to write some kind of clean and polished post which is void of my honest feelings. So, here we are. If you need to get caught up, I blogged about new symptoms I began having HERE and HERE.

I kind of chuckled when I sat down at my computer, because I remember writing my last post a week ago. When I was typing it out I distinctly remember myself omitting a line at the end where I said, "I just really hope it's not this 'one' disease." At the time I deleted it because I thought I might somehow jinx myself by putting it out there. But looking back now I realize that a part of my intuition knew it would be the answer, and I deleted it out of a sense of denial. It takes me a couple of days to write a post (I typically do it in segments), so by the time I was hitting "Post" a few test results had came in. As with most test results, when you look at them as a stand alone number it doesn't mean too much. But when you start combining it with other results the picture begins to form. I was aware that it was just as likely to be something minor like an unknown allergy as it was to be something more sinister. The tables could turn either direction, and I refused to believe it could be anything BUT just some simple little allergy.

There was just one pending test which stood between myself & this make believe land I was living in. I really truly believed it would come back negative & I could go on my merry little way and begin the gamut of allergy testing. It's almost like I actually thought if I believed it enough then it would happen. As if I could will my ideal future into existence. Quick spoiler alert, it turns out I could not.

The results came in, and right there in black and white were the words: Crohn's Disease. My first thought was "no way, no way, there is no way." But soon reality settled in and I realized that it made so much sense. It was indisputable; every single test result pointed in that direction and every single symptom fit. All my pain finally made sense. The severe stomach pain, the cramping, nausea, fatigue, loss of appetite, sensitivity to most all food, etc. Crohn's causes widespread inflammation (and ulcerations) which can affect your entire GI tract from the mouth to the colon, as well as the eyes, joints & skin. I had began having some eye ulcers & tongue/mouth ulcers a while ago, and now those weird symptoms finally had a home as well.

Crohn's Disease is chronic inflammatory bowel disease (IBD) characterized by inflammation of the GI tract. It is believed to be autoimmune in nature, where the mucus membranes essentially attack themselves. There is no "cure," and it varies between periods when disease is active or flaring, and when it is in remission (less/fewer symptoms). Crohn's varies person to person, and flares can get very serious if not handled properly. It can bring fun things like bowel obstruction, fistulas, fissures, malnutrition, and toxic megacolon among many other things. So keeping a keen eye on the body during a flare, and reducing the inflammation as soon as possible is very important. Also, both IBD's (Crohn's and Ulcerative Colitis) increase the chance of colon cancer by a great deal, so from now on I will need to be proactive about routine testing for that.

Alright, so now all the fun facts are out of the way, how do I feel? Well, where to begin.. I feel partially relieved. I was shooting in the dark for so long without an answer to my pain. I knew in my gut that this was something different.. this was something new. Getting an answer has allowed me to do things like completely re-haul my diet. Those with Crohn's have set diets during a flare (typically low residue) and then another diet they follow rather continuously to prevent a flare and keep the stomach relatively calm. So having this information now gives me the ability to hope for less painful meals & that gives me some peace. Getting answers has also allowed me to start reading as much as I can about Crohn's and has given me the hope of getting things under control.

On the flip side I feel overwhelmed. This is a whole new disease which I have to come to terms with. It's a whole new beast I have to work my way through to understand. Everything about this is brand new to me. A few years ago I was very green around the gills about Lyme Disease information, but through life experiences and research I was able to learn a lot. With Crohn's I am at the starting line. I feel like I hardly know anything, and it will take a lot of trial and error to find what does or doesn't work for my body. I also feel angry. I guess anger has been my primary emotion, and it's just this feeling of, "Seriously?!" Those of you following along know how HARD I have fought for my health to reclaim it from the grips of Lyme Disease. You also know that last year I got some great news about my bacterial loads & progress I made there. We went through mold remediation & I saw the light at the end of the tunnel. The specialized visual/brain therapy was all set to go, and I thought this was finally soon going to be "it" for me. I just so desperately wanted to be rid of all that plagued me, and on the path to getting pieces of my life back. I have struggled with IBS from 10+ years, and when things got more severe with my stomach in December I thought I could breeze through it and resume normalcy soon enough. It just never occurred to me that what I thought was routine IBS was actually Crohn's forming in my body. To be honest, this has likely been a part of my life for longer than I realized, but December was a particularly stressful time in my life which brought about the flare.

So what now? Well, traditional Crohn's treatment calls for steroids and biologics, both of which are HUGE no no's for those with Lyme Disease. They bring down the immune system and create the perfect environment for the Lyme (and other infectious bacteria) to come back out and relapse. It is imperative that I keep my immune function up in the places where it needs to stay up, so that traditional route will not be for me. Crohn's and Lyme Disease are on polar opposite ends of the treatment approach spectrum and that complicates matters. It will take work with Doctors & trial and error to find the right direction to go. I'm sure I will be able to navigate it, but right now it feels so much bigger than me.

And lastly, the question I'm sure many people are asking (because I know I did), how did this happen? The exact cause of Crohn's is unknown, but its a combination of genetics, the immune system & the environment. I know now (through testing) that I do indeed have the genetics for Crohn's. Check. I also know that Lyme Disease has caused disastrous turmoil to my immune system, creating the dysfunction, which is item number 2 on the list, so.. Check. And I have been in a state of almost constant stress, so my environment was prime for the picking. Check.

When I look at my family tree everyone is honestly SO healthy. Like, they could not be a healthier group of people. I am the only odd man out from the whole bunch. No close relatives on either side of my parents have an IBD like Crohn's. So genetics alone would not have activated this disease. However, what I did have (which none of my other ancestors or family had) is Lyme Disease. Lyme Disease eviscerates the immune system, and demolishes every piece of regularity it has. Lyme is known to create so many autoimmune conditions due to it's ability to get the immune system to improperly attack itself. Since my Lyme diagnosis I have became allergic to almost everything; foods, chemicals, you name it. The wrong shampoo gives me a migraine & inhaling the wrong chemical sends my heart into a tachycardia attack. My immune system has been dysfunctional for a long time due to Lyme, and in this case it coupled with my genetics, my environment, and created Crohn's. Bing, bang, boom.

I guess for now, this is all I have to say on the topic. I'm still digesting it and navigating through the complex web of information. I know that there is a reason for everything in life. I know God has a purpose for this in some way I can't yet see. But right now that does not bring me comfort, because I'm not to that stage just yet. On a rational level I can understand that, but on an emotional level I'm still lagging. However, I do feel unbelievably thankful to have gotten an answer now vs a few months down the road. This diagnosis also came just in time for Lyme Disease Awareness month, because boy oh boy, if there ever was a time that I loathed Lyme disease most, it would be now. If there was ever a time that I was motivated to spare even just 1 person from going through this, it would be now. The longer the Lyme bacteria goes unchecked before being properly diagnosed (5 years for myself), the more time it has to create deep destruction. Some of which won't even rear its ugly head until years later when you least expect it. My passion to stop this madness and advocate for a real lasting cure has been reignited 100 times over.

Heres the thing many of you know about me by now: I don't take no for an answer. I refuse to be pulled into this trap where I talk myself into believing I'm stuck with Crohn's for life. In the little time I've had to process this I've read about so many people in remission for years, living free and clear of Crohn's symptoms for 5,10,15+ years. Mark my words, I will be one of those people. I'm determined to reverse this process; to find a way to get to the root cause.

I will keep this blog updated as I navigate the world of Crohn's and try to climb out of the current flare which I am currently in. I will have further testing to try and tweak things in my diet/environment which might be contributing to the flare, so there is still lots of work to be done! I might be less responsive in the coming month or two, so if there's a lag in replying to emails etc then this is why. Thank you to those of you following along, and thank you for all the prayers. I feel them on every level.

xoxo,
Christina

21 Comments
Peter
6/21/2017 04:20:48 pm

Chron's can be cured. There are many ways, one would be to attack the cause. I have papers at home that I can send you to look at - they HAVE found the microbes which are, it seems, causes of Chron's. I also know that LDN therapy (Low Dose Naltrexone) helps - it stops the disease 100%, but only for as long as you keep taking it. No one is sure how the LDN therapy works, but I think it may actually have some sort of inhibitory effect on the proliferation of microbes, or at least something they do to confuse our immune system.
All in all, don't worry about Chron's it is not such a big deal, if approached with open mind and correct information.
Good luck!

Reply
Christina
6/26/2017 09:18:26 pm

Hi there! I have read a lot of research on Crohn's too & yes it seems they suspect the microbiome plays the largest role. I'm in a research study now which is studying the microbiome of Crohn's & UC patients against those with IBS & other healthy controls. I hope it can help them discover a bit more definitively what other changes are in the gut of those who have it! I'm working with great Doctors who really get it. One step at a time!

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Kate
2/21/2022 06:11:04 pm

Too tight Peter! Crohn’s is caused by mycobacterium paratuburculosis, and it can be cured. Long term combo antibiotic therapy- my brother was diagnosed with Crohns as a teenager and after surgery to remove part of his colon… and hearing the doctors preparing to remove more, my parents went out of their minds to find another option. Researchers in England as well as Australia identified the bacterium responsible. Ozone and UBI therapy can fill it, as well as or in addition to long term antibiotics, usually a combo of two or three.

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Berly
6/24/2017 10:19:19 pm

Contrary to the previous comment, I believe Crohn's is a big deal---it can be very serious despite one's mindset in approaching it and I hope you are able to get to remission. I wanted to encourage you to never give up as you said. My sister suffers from Crohn's and she is doing well now but it is not an easy journey. I'm new to your blog and I look forward to reading more about your journey. Wishing you good health and complete healing.

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Christina
6/26/2017 09:13:50 pm

Thank you so much for your support & kindness. Yes indeed Crohn's is a big thing, especially to a newbie like me who feels thrown into the fire so to speak! I know it's good intentions to say "it's no biggie" but I'm not quite feeling that way at the moment! Hopefully one day it won't feel like quite as large of a mountain to climb. I wish your sister well & I am encouraged to hear that she has found ways to help manage it. That is my greatest wish as well.

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Jo Jo
6/30/2017 09:20:08 pm

Hi! I want to tell you that Chrons can be brought into remission thru diet. I know from my own personal experience (unfortunately!) Go check out SCD Lifestyle's website. I was very sick but had given up on doctors and took things into my own hands - had asked God to either heal me or take me home. It is not a fun journey but after being on this clean diet for over 6 years it has proved to be worth it. Ha - "conquered" this painful enemy only to be diagnosed with lymes this year and LLMD figures I have had it since 2012. Hope you can turn things around rather quickly and find answers to bring you good gut health.

Reply
Calvin
6/30/2017 10:24:38 pm

I'm cooking up some brasco broth right now.. My life is empty because of how bad I feel, it hurts to eat, can't eat out. No inflammatory foods, no wheat, sugar, or dairy. The flares, heating pad on gut, trying to sleep, never knowing when or what your going to get. They cut out my perfectly healthy gallbladder as well, then said oh the problem is in your head. Crohns can be a difficult diagnosis, missed 30% of the time. They are working on it (not in the U.S., here they just wait until they can cut again, and again, and again), so hold on tight. http://www.crohnsmapvaccine.com/

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David
2/13/2020 12:50:26 pm

This is my life as well so I feel your pain Calvin. I'm pretty scared to eat so I fast a LOT and since getting Lyme, I've withered away in weight. Definetly not fun and WAY more serious than some lead on. I was an ammature body builder before all this basically took away my ability to eat and sustain any size. I'm lucky these days if I can end the week at the weight I started. I'm working now on a holistic approach since I do not respond well to the Lyme or Chrons drug treatments.

Reply
JoJo
7/1/2017 09:09:07 am

I just read my earlier reply -- I use to pride myself on spelling skills -- now I can't even spell what is (partially) wrong with me!
Yep, if doctors can't figure out what is wrong they blame it on your head! The "it's in you head" is not a diagnosis -- it is a cop out. You know when something is wrong with you even if there is no name to pin on it. I knew there was something wrong for years but was told I was too healthy to be sick -- so a Lyme's diagnosis explained a lot. Now the battle is on...my heart goes out to all who battle this lonely place and who journey thru Crohn's -- both can leave you hopeless at times -- blessings to all.

Reply
Michele Wilhelmsen
4/27/2018 02:33:15 pm

My daughter has Crohn's and now has been diagnosed w/ Lyme. Been reading a lot about how Lyme mimics Crohn's. Could the Crohn's actually be Lyme is disguise? THe practitioner who is treating my daughter says the Crohn's goes away when the Lyme gets treated and weakens it's grip on the immune system. SO many questions!! Thanks for your blog!

Reply
Natalie Anderson
11/17/2018 06:29:36 am

Would you mind sharing more if your story. We are in the exact same situation but our GI Dr. says it's not Lymes without even seeing her and stop antibiotics do more Remicade.

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Brooke
11/25/2018 09:13:15 am

Hi Michele,

What does your doctor say about Chrones being caused by paratuberculosis? I would love for my chrones to go away when my lyme does, but not sure of that will happen. Maybe the doctor believes the treatment will also help paratuberculosis?

Reply
Tracy Joy link
7/24/2018 04:51:16 pm

Thank you so much for sharing! We are a family of 5 who all have Lyme... and our middle child may be also suffering from Crohns (waiting for results). So thank YOU <3

Reply
Melissa Slaugh
8/23/2018 12:49:24 pm

Hi Christina. I have been suffering from Lyme Disease for at least a decade now. I too have recently been diagnosed with Crohn's Disease this last year. My Lyme Docs seem to think the Crohns is caused by the Lyme. The theory is pull off the Lyme and the Crohns will go away. It is a big deal. Oh my Gosh I am in so much pain. I am sorry for your diagnosis and pain. You probably already know this but eating clean will help. Lyme will feed off sugar. I also had parasites that I was dealing with and had to take care of them before the Lyme could be treated. Hang in there! Keep searching. Answers will come! Strength in Numbers!!!

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Chrisma
10/6/2018 09:20:14 am

Naturopath diagnosed my daughter with Lyme this year. She was very sick and nobody could diagnose. Ended up in hospital and they diagnosed with Crohns. Please someone tell me there is a correlation with Lymes and there is a cure.

Reply
Melissa Slaugh
10/6/2018 02:31:58 pm

Hi Chrisma. Indeed there is. I have Lyme and the Lyme caused my Crohns. Im sorry for your daughter's diagnosis. It has been a long journey and I have been to MANY MANY doctors that have missed it.

Reply
Erin SHANNON
9/13/2019 10:34:17 am

Hi- I am going thru the same thing and my gi doc does not believe there is a correlation. How did they test you to find out or how did you convince gi to look deeper into the lyme coinfections?

R3 Stem Cell link
11/10/2020 02:43:46 am

Thank you for sharing this thorough post and such posts helps individuals with early diagnosis, where it is easier to cure the disease.

Reply
Jovita M Anderson
5/26/2021 02:02:50 am

I was diagnosed with ulcerative colitis back in 2007.my doctor retired in 2015.took me til 2018 to find a good rated GI doc,and I thought I found one. He did his own testing, yes lots of different tests and turns out I have crohn's. Fast forward to 2020, nothing was really working so he put me on imuran, and at that time I had a tick embed in me ony right knee. Within a week I felt like I was knocking on death's door, I didn't get the classic bullseye rash, yet a widespread discoid rash on the whole right side of my body, I had severe headaches, severe neck pain, and my legs could barely hold me up.i seriously thought it was an allergic reaction to the imuran. Shrugged it off for another day or 2 and I spiked a high fever and my eyes started to go blurry, at the time I felt like I had a mind wipe, like a hard drive in a computer that just got all files deleted, finally my husband took me to the emergency room. The attending PA ran every test imaginable and my antibody test was reading at 8.0 my WBC was 17, admitted overnight and started oral doxy, when my western blot came back positive, I was given 21 more days of doxy and told I would be fine. I was never able to return to work.here we are coming up ony 1 year anniversary for diagnosis and I'm no further ahead.i have terrible joint problems, loss of balance and motor skills, brain fog, chronic agitation, pain that's unbelievable,insomnia, extreme fatigue, yet my GI doc pushed me thru after the doxy course and had me start on Humira,,,big mistake!!! I feel horrible for 3 straight days and I'm bedbound after every injection, I never did well on steroids b4 and I refuse to take them now from what I've read about the Lyme connection. But anyways my GI doc gets all bent up when I tell him this biological therapy isn't working and when we do discuss new treatment options he gets irritated when I ask if it's going to affect my Lyme disease,and he always says, u don't have that anymore,u were treated and recovered, yet I now have to see a bone specialist over my left ankle constantly being swelled really bad.had an x-ray done and the reading came back as a sclerotic bone lesion,,, had about 25 x-rays done on this able in my life and never ever heard that term until 6 months ago.... Anyways, I'm just confused and not sure what avenue to take,the closest llmd is6 hours away and the appts are as far as 8 months,,, I feel horrible every day.please help?! Is it even safe for me to be raking

Reply
Gord
10/31/2021 03:16:19 am

Diagnosed with Lyme in 2000. 5 yrs abx, 1 yr hyperbaric, 1 yr Cowden protocol.
Finally, 2 yrs Salt & Vit C protocol gave me 10 yrs of relief. Thought I was cured, but had only knocked it back and it returned a year ago
Diagnosed with Crohns now

Started Borrellia, Babesia, Bartonella. They think I got it in 1980 but symptoms came on slowly as I was a heavy duty athlete,until a major rugby injury in 1995. Major symptoms in 2000 then recently 2 yrs ago RMSF.. All gone now, but lingering Lyme

Salt & C is the way to go, but don't quit when you start feeling better.
Stay on 6 gms of each per day for continuous abatement after main treatment period more than 2 yrs
You will have horrible herxes at 3 , 6 ,9 12, months but will get better
Yahoo has a group for support from others doing the same protocol.

Reply
Szilárd Balatoni
6/22/2021 05:31:31 am

Hi! I was diagnosed with indeterminate Crohn's/Ulcerative Colitis two years ago. I was doing well on just 5-ASA, an anti-inflammatory drug for IBD. But then after one year, everything was getting worse and worse..I've had severe pain and bleeding. Then I'd researched and found out I have Lyme's coinfecitons - I ran a panel test at Vibrant America, and it showed I have Bartonella and Babesia. Bartonella henselae can cause IBD, so we have started to treat this infection. I'm in my first month with some improvements - hope the whole gastrointestinal nightmare will go away.

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