Crohn's Story

[cmccormack5]

First off, let me start by saying I’m just what I like to think of as an everyday, normal person who has honestly never even read any stories on here, more just trying to get my story out in hopes maybe it can reach someone to help. My name is Chris, and I’m in my senior year of college. Hope one day to get a job at some type of established company, just like any college student.

I am 21, and was diagnosed with Crohn’s around the age of 7. I’m not gonna sit here and tell everyone how bad it’s been since the age of 7, because in reality, life has been pretty good. Everyone with the disease knows it has its ups and downs, flares and remission, changes of medicines, the list can go on and on. I’ve been lucky enough to dodge the resection bullet so far, but probably will eventually need it. Just recently had my first stint in the hospital as a result of Crohn’s thanks to some abscesses that decided to hang out on my intestine.

This most recent flare I’ve been having has got me thinking though. Basically if I backtrack to when it started using the short version, my girlfriend had some type of stomach bug last December. She, being the generous person she is decided she wanted to share. Hers went away, mine never really did. I kind of put up with the normal bathroom problems until May. Finally decided it might be a good idea to call my GI. And from the day I called him until 2 days ago I was on prednisone up and down dosages. About a month ago, while I was weaning off the prednisone I had some type of weird pain in my stomach. Im not sure about everyone else, but I know Crohn’s pain from most other pains, and this wasn’t it. I couldn’t sleep, had pain when I peed, had pain when laying down, it was just kind of weird. My doctor decided to get me a CAT scan, and in my typical luck I started getting better. I almost decided to not get the scan. But I went anyway. Got a call about 2 hours after basically telling me to get to a hospital sometime very soon because I had abscesses and the doctors were scared I might perforate. My first thoughts with me being a pretty calm person consisted of me kinda laughing at the whole situation, like I just started getting better, and of course now I gotta go home and hang in a hospital. So that night I went home from school and met my parents at the ER. Hung out in there for 3 days getting pumped full of antibiotics. Im a positive person, but it sucked. I mean no one likes being in the hospital, just kind of a sucky place. But I understood what I had to do and there was nothing I could really do about it. Avoided surgery and now im about a month out of the hospital? The past 2 months have been a blur. Anyway now that im just rambling, this whole thing has me thinking.

Basically when I was younger my mom tells me how often I would get strep. I would get it all the time and then have a flare. Then I started to realize that I had about 10-11 sinus infections in the time span of about a year and a half. Pretty bizarre I thought. The sinus infections eventually seemed to kind of stop for a few months prior to this recent flare. And I haven’t had one for about a year now. But I dealt with this flare. Basically my one question that I have for everyone is if they have every dealt with recurrent infections? I’m no doctor, but I just like to listen to what my body tries to tell me. I feel like maybe the infections were just my immune system booting up, and then attacking my Crohn’s. No idea if this makes sense medically or if im just talking out of my butt. But im interested. Im interested in what happening to my body. If anyone has noticed the same id love to know.

Ever since I was a kid, I have been to tons of doctors. I’ve been through tons of tests. Ive had to go through NG tube feedings for almost 2 years of my life. I’ve dealt with the joint pains associated with the disease. Ive dealt with playing phone tag with doctors. Ive had doctors tell me all the side effects of the medicines. Ive had doctors tell me the surgeries ill have to go through. But also ive had years of remission. I have great memories. I have a great girlfriend, a great family, and great friends. I know that so many people have it worse than me. And that has been my outlook since I could remember. Im not one to sit and wallow. I was given the hand I was dealt and I cant change it. I can choose to think about all the negatives or the positives. I think about the positives just simply because theyre more fun to think about.


Again, im just an everyday kid with Crohn’s. If I can help anyone or anything relatively close to help I love doing it. Makes me feel like im giving back. You can reach me at Christopher.mccormack@uconn.edu. I know a lot of you probably have kids that read this, and I wish I knew someone that went through this to talk to. And if anyone has any related experiences with the infections prior to a flare id be pretty interested to know. Sorry for rambling and all the grammar mistakes too, Im no English major.

Chris

 

[Jennifer]

Hi cmccormack5 and welcome to the forum! Sorry for the late reply.

Thank you for sharing your story with us. I hope you're willing to stay a member on the forum and help people by posting so everyone can read, learn and relate.

As for the recurring infections, I recall having a lot of ear infections as a child but don't recall how often exactly or if any bowel issues followed. I do know that I didn't keep having them following my diagnosis. As I got older I started having recurring throat infections (usually strep) for a few years until I finally had my tonsils removed last year. Haven't had any since. Have you seen an ENT (ears, nose and throat specialist) to figure out the cause?

 

[cmccormack5]

Hi Jennifer,

I've been to 2 different ENT's and an ale fist, all basically say I have a slightly deviated septum by nothing besides that. But now that I've been flaring for almost a year, I haven't had any infections, (besides my abscess on my intestine hahaha). Just seems weird I seem to always get recurrent infections that stop and a flare ensues. Thanks for the reply though!

Best,

Chris

 

[***Lisa***]

Hi Chris:

My daughter is 21, in college and battling Crohns, too. With her, if she gets any type of cold or flu, any type of infection, really, she generally goes into a severe flare. The only exception was a recent cold she had which came and went without causing her symptoms to get worse. Do you take any medications or supplements now? She stopped taking meds a year ago and doesn't want to go back. She's doing pretty good right now and we are hoping it continues. She has an incredibly positive attitude, just like you, and although she has suffered a lot and had to drop out of college one semester, she has never asked why me or spent any time feeling sorry for herself. This disease has made her very grateful to have the wonderful family and friends she has.

You and my daughter, Rachel, inspire me! Don't ever let this disease change your outlook on life.

Take care.

Lisa

 

[cmccormack5]

Hi Lisa,

That's pretty interesting, I just find it almost too coincidental that crohns patients seem to get sick followed by a flare. I actually got myself off of 6mp for almost 2 years, and I really wasn't interested in going back. But since June I've been back 6MP, and as of 1 week ago I've added Cimzia which has scared me more than one could understand. My doctor really thinks that the Cimzia will help me along with the 6MP. The abscesses that I had were kinda scary to my doctor and she feels the biologics do a good job at stopping inflammation within the tissue of the intestine.

Has your daughter changed diets or done anything different since her last cold/flare? or do you think it's just a coincidence?

Personally, I've tried dropping gluten, but since the middle of October have went completely off grains in hope of less inflammation. Trying the paleo diet out, but its tough to get used to. Look forward to hearing back and good luck to your daughter!

Chris

 

[***Lisa***]

Hi Chris:

It's a long story, but I'll try to keep it brief. She took biologics for the first five years (i.e., Prednisone, 6MP, Cipro, Flagyl, Entocort, Remicade, etc.). That was from age 15 to 20. The only thing that helped was Remicade, but it lost all effectiveness after two years. Her Gi kept increasing her dosage, with no results, so we brought her to another GI in a major city and after the colonoscopy, they told us she had one of the worst cases they had seen and that she had to go on Humira right away (her small intestines were so inflammed, they could not complete the scope). That was exactly one year ago and, at that time, she decided against taking Humira or any other long term meds. I fully supported her decision and commited myself to research every alternative treatment as well as various diets. She got very sick in February of this year, dropped out of college and was on prednisone for six weeks. The only medication she has taken since then is nystatin to try and combat the medication induced thrush she has had for months. She is noe doing incredibly well.

What she has found works for her is:

(1) Following the SCD diet, but she does cheat on occasion.
(2) To help combat the thrush, she avoids any food with yeast in it (no sugar, no bread & no pasta)
(3) Taking Vitamin D3 supplements is the most important supplement she takes as it naturally controls the inflammation in her intestines. She takes between 10,000 to 15,000 IUs of D3 a day along with 400 MCGs of Folic Acid and 600 MGs of calcium. She also takes a variety of other supplements like Vitamin K2, B12, Glutamin, DHA 500 & Probiotics, however, I firmly believe Vitamin D3 & Folic Acid are the most important supplements when fighting Crohns. Check out the "Vitamin D Council" website as you can find a wealth of information there about the benefits of Vitamin D. The next time you have your blood drawn, ask them to test your Vitamin D level.

I could go on and on about what she's has done and is doing now, but this captures the most important aspects of her current regiment. When she was taking meds, she was going to the bathroom 15 to 20 times a day, had no appetite, lost a ton of weight, had skin rashes, did not sleep more than an hour at a time at night, missed a ton of classes due to her having to practically live in the bathroom, having so many accidents that she had to drop out of college even though she wore a diaper to school every single day (the diaper just could not contain her accidents). She had no social life, but was not resentful of her friends going to parties or to the movies or spending a semester abroad.

She had faith that things would get better and she was right as now she goes to the bathroom 4 or 5 times a day, sleeps between 4 to 8 hours straight at night, has stretches of 8 to 10 hours during the day without visiting the bathroom, rarely misses class and is now able to hang out with her friends again. When I think about it, it really is incredible that she is doing this well without being on any meds, with the exception of the nystatin.

I highly recommend you read the book, "The Vitamin D Solution" by Dr. Michael Holick. It outlines how virtually everyone does not get enough Vitamin D and when you do not have sufficient amounts of Vitamin D, inflammation rages out of control in your body and causes a multitude of health problems including IBD, psorasis, arthritis, etc. Vitamin D deficiency affects different people in different ways.

I truly hope my daughter's story helps you, Chris. Please do not hesitate to contact me if you have any questions either in this string or feel free to pm me. You deserve to live a healthy, happy life and I am willing to share my daughter's trials & tribulations with you, if it helps you in any way.

All the best!

Lisa

 

[Crohn's gal since 1989]

For me it was recurring tonsillitis. I had them removed at 22 after 24 bouts of tonsillitis. Never have had the joy of strep.

 

[cmccormack5]

Hi Chris:

It's a long story, but I'll try to keep it brief. She took biologics for the first five years (i.e., Prednisone, 6MP, Cipro, Flagyl, Entocort, Remicade, etc.). That was from age 15 to 20. The only thing that helped was Remicade, but it lost all effectiveness after two years. Her Gi kept increasing her dosage, with no results, so we brought her to another GI in a major city and after the colonoscopy, they told us she had one of the worst cases they had seen and that she had to go on Humira right away (her small intestines were so inflammed, they could not complete the scope). That was exactly one year ago and, at that time, she decided against taking Humira or any other long term meds. I fully supported her decision and commited myself to research every alternative treatment as well as various diets. She got very sick in February of this year, dropped out of college and was on prednisone for six weeks. The only medication she has taken since then is nystatin to try and combat the medication induced thrush she has had for months. She is noe doing incredibly well.

What she has found works for her is:

(1) Following the SCD diet, but she does cheat on occasion.
(2) To help combat the thrush, she avoids any food with yeast in it (no sugar, no bread & no pasta)
(3) Taking Vitamin D3 supplements is the most important supplement she takes as it naturally controls the inflammation in her intestines. She takes between 10,000 to 15,000 IUs of D3 a day along with 400 MCGs of Folic Acid and 600 MGs of calcium. She also takes a variety of other supplements like Vitamin K2, B12, Glutamin, DHA 500 & Probiotics, however, I firmly believe Vitamin D3 & Folic Acid are the most important supplements when fighting Crohns. Check out the "Vitamin D Council" website as you can find a wealth of information there about the benefits of Vitamin D. The next time you have your blood drawn, ask them to test your Vitamin D level.

I could go on and on about what she's has done and is doing now, but this captures the most important aspects of her current regiment. When she was taking meds, she was going to the bathroom 15 to 20 times a day, had no appetite, lost a ton of weight, had skin rashes, did not sleep more than an hour at a time at night, missed a ton of classes due to her having to practically live in the bathroom, having so many accidents that she had to drop out of college even though she wore a diaper to school every single day (the diaper just could not contain her accidents). She had no social life, but was not resentful of her friends going to parties or to the movies or spending a semester abroad.

She had faith that things would get better and she was right as now she goes to the bathroom 4 or 5 times a day, sleeps between 4 to 8 hours straight at night, has stretches of 8 to 10 hours during the day without visiting the bathroom, rarely misses class and is now able to hang out with her friends again. When I think about it, it really is incredible that she is doing this well without being on any meds, with the exception of the nystatin.

I highly recommend you read the book, "The Vitamin D Solution" by Dr. Michael Holick. It outlines how virtually everyone does not get enough Vitamin D and when you do not have sufficient amounts of Vitamin D, inflammation rages out of control in your body and causes a multitude of health problems including IBD, psorasis, arthritis, etc. Vitamin D deficiency affects different people in different ways.

I truly hope my daughter's story helps you, Chris. Please do not hesitate to contact me if you have any questions either in this string or feel free to pm me. You deserve to live a healthy, happy life and I am willing to share my daughter's trials & tribulations with you, if it helps you in any way.

All the best!

Lisa

Hi Lisa,

Sorry for the late response, just getting back on track with school work haha. Thats really interesting what you say about the Vitamin D. I know I have always had low vitamin D levels 10000-15000 IU's is a ton though! I take 3000 but that was just while i was on prednisone. I'm definitely going to look into that though. Currently a month into Cimzia and doing OK. No longer have any signs of abscesses, however i am scheduled for another MRI on wednesday to check inflamation as i am still having some discomfort.

I send my wishes to your daughter though. I couldnt even imagine how hard that was. I am lucky enough to have it not nearly as bad. It is amazing how well she can do off drugs! I was off for 2 years and it was great, and this flare is coming back with a vengance hahaha. Good luck to your daughter!

 

[cmccormack5]

For me it was recurring tonsillitis. I had them removed at 22 after 24 bouts of tonsillitis. Never have had the joy of strep.

i think thats so weird! there has to be something going on with our immune systems where it just boots up, attacks one thing for a while, and then just moves on to our gut. Ive heard it from so many people.

 

[***Lisa***]

Hi Lisa,

Sorry for the late response, just getting back on track with school work haha. Thats really interesting what you say about the Vitamin D. I know I have always had low vitamin D levels 10000-15000 IU's is a ton though! I take 3000 but that was just while i was on prednisone. I'm definitely going to look into that though. Currently a month into Cimzia and doing OK. No longer have any signs of abscesses, however i am scheduled for another MRI on wednesday to check inflamation as i am still having some discomfort.

I send my wishes to your daughter though. I couldnt even imagine how hard that was. I am lucky enough to have it not nearly as bad. It is amazing how well she can do off drugs! I was off for 2 years and it was great, and this flare is coming back with a vengance hahaha. Good luck to your daughter!

Hi Chris:

To get the Vitamin D3 she needs (at least 5,000 IUs) along with Folic Acid & Calcium, she has been taking a supplement.

You will find the right combination of meds, supplements and/or diet to keep you in remission. I have no doubt about that. Please keep us posted on your progress.

All the best!

Lisa

 

[Terry]

Hi Chris, I was diagnosed with Crohns way back in 1988, 18 months prior to that diagnosis I suffered severely with chronic sinus infections which didn't really respond to any of the meds I was given. I also have a problem when I've been put on Imuran I end up with chronic chest infections which again don't respond to antibiotics either, although my GI's have also disagreed with me on this I believe it happens because the Imuran lowers my immune system to much, funny thing is that as soon as I go off it the infections clear up.

 

[cmccormack5]

Hi Chris, I was diagnosed with Crohns way back in 1988, 18 months prior to that diagnosis I suffered severely with chronic sinus infections which didn't really respond to any of the meds I was given. I also have a problem when I've been put on Imuran I end up with chronic chest infections which again don't respond to antibiotics either, although my GI's have also disagreed with me on this I believe it happens because the Imuran lowers my immune system to much, funny thing is that as soon as I go off it the infections clear up.

interesting. as far as i know Imuran is pretty equivalent to 6MP which is an immunomodulator? Unless i stand mistaken. But the weirder thing for me was that i was completely off medications when i had my recurring sinus infections and strep. That has to be scary though not responding to antibiotics. These drugs could work wonders or not help at all!

 

[Terry]

I was on a low dose 50mg of 6mp for about 3 years quite successfully and in 2011 I had a flare so my GI tried Pantasa along with the 6mp but I couldn't tolerate the pantasa, it made me very nauseous. So in his wisdom he decided to double the dose of 6mp, to cut a long story short I had an allergic reaction to it which caused Insterstitial Pneaumonitis which is severe inflammation of the lungs, luckily for me this reversed itself as it can leave you with permanent lung damage, consequences of this is I can no longer take 6mp or any drugs from the same family of drugs. I have chosen not to take any of these high powered drugs any more and am currently on the waiting list to have a resection of the TI. I think that you will find Your recurring infections are because prior to you having a flare your immune system becomes severely compromised.

 

[Tesscorm]

Hi Chris,

Thank you for posting your story! You have such a great attitude, I'm so glad that crohns hasn't had an impact on your outlook!

Re your question on infections, I haven't found this to be the case with my son but it certainly makes sense in that your immune system would respond to the sinus infection and this change could then trigger a flare. Not sure if it was mentioned at all above?? but, I imagine your sinus infections were treated with antibiotics - I believe antibiotics can also have an impact/trigger a flare.

FWIW, my son used enteral nutrition (EN) as a supplemental/maintenance treatment for the first two years after diagnosis. The only medication he'd taken was flagyl for a week and nexium, he did exclusive EN to induce remission and then kept with the formula at half dose along with a regular diet. While this did not eliminate all inflammation (hence the commencement of remicade this year), it did eliminate all other symptoms and no further flares. I do believe that the nutrition he took in from the formula (consistently) helped maintain his health and control his crohns. He's away at university so, knowing that his diet will not be the best, even though he is on remicade, he continues to drink one or two nutritional shakes per day (at least, most days). As far as supplements, he takes liquid vitamin D (2000 IU) and krill oil (1000 'mg' I think...).

I know a lot of you probably have kids that read this, and I wish I knew someone that went through this to talk to.

I hope you don't mind that I am posting a link to your story on the Parents of Kids w/IBD subforum... there is a ongoing thread where us parents worry about our kids' future. I really appreciated reading your story and loved your outlook. I hope you don't mind that I've shared it.

I hope your current flare comes under control very soon and you can simply get on with enjoying your day to day activities!

 

[crohnsinct]

Holla Husky!

Love your attitude and it is pretty much the same as my 14 year old daughter's attitude. I am going to have her read your post for reassurance.

Up until recently I haven't noticed more infections etc but she has had this lingering cough/cold thing. Not enough to knock her out or prompt a doctor visit but definitely making itself at home more than any other she has had before.

 

[my little penguin]

My DS was like you dx at age 7.
He also has an good attitude about it all so far.
He aslo suffers from numerous bouts of strep even after he had his tonsils removed he got strep quickly again.

 

[Farmwife]

Hi another mom here.
My girl is 4 and has a Princess attitude about it all.
I think it's great about your attitude.

Yes Grace has had countless illnesses and some bring on flares.

 

[cmccormack5]

please share it with whoever you's like!

thank you everyoen for your input, i find it so bizarre with the infections i just have this gut feeling like its related in some way haha.

 

[***Lisa***]

please share it with whoever you's like!

thank you everyoen for your input, i find it so bizarre with the infections i just have this gut feeling like its related in some way haha.

Hi Chris:

Infections are caused by inflammation. Vitamin D controls inflammation. What was your Vitamin D level the last time you had it tested?

I suggested supplementing to a man and received this from him:

"Lisa you have helped our son a lot. He is doing awesome , growing , playing and doing all things a "normal" kid does. However, he is taking Flagyl and azithioprine which kills me to give it to him. We have a wonderful doctor and it is very scary to change something that is working with this disease. Thanks to you he takes vit d ,fish oil and folic acid. I couldn't thank you enough. Of course I will look into this new foundation and give my support. I don't know you personally but just because you think about my son I will always have an unconditional love for you and your family. I am VERY happy for your daughter and hope my son one day will go to college and have a regular life that all of us take for granted.
All the best
Alan"

Another source of info is vitamindcouncil.org. You owe it to yourself to check it out and remember, very rarely will a doctor recommend increasing your Vitamin D3 intake, along with Folic Acid as that is a Vitamin D profactor. You have to do this on your own, as we did with our daughter, and we are so glad we did!

Lisa

 

[June9teen]

Hi!

Not sure if it amounts so something, but I have chronic tonsillitis since I can remember. And recurrent urinary infections (the pain in my right kidney is a bitch!) despite the amounts of antibiotics I have taken so far.

 

[cmccormack5]

Hi Chris:

Infections are caused by inflammation. Vitamin D controls inflammation. What was your Vitamin D level the last time you had it tested?


Lisa

I know I have always been on the lower end of the spectrum if no abnormally low. But since i started on prednisone in may ive been on 2000IU of vitamin D daily.

 

[***Lisa***]

I know I have always been on the lower end of the spectrum if no abnormally low. But since i started on prednisone in may ive been on 2000IU of vitamin D daily.

Hi Chris:

2,000 IUs of Vitamin D3 a day is not enough. Before my daughter started taking D3 supplements, her level was so low that it would not even register on the test. In my opinion, for anyone with an inflammatory disease, you have to take much more than 2,000 IUs a day. My daughter did not start to get her symptoms under control until she took between 15,000 to 20,000 IUs of D3 everyday with folic acid & calcium. By taking that, it brought her Vitamin D level up to 175 nl/ng and that was when she started to go into remission. Her doctor was not happy to see her D level that high and asked her to reduce it, however, after all the research I have done, I am convinced the reason she is doing so well today is because she raised the level of Vitamin D in her body. According to Dr. Holick's book, taking up to 30,000 IUs of Vitamin D3 everyday is perfectly safe.


Lisa

 

[Jennifer]

Always consult with your doctor before supplementing anything. Too much Vit D can cause other health problems so be sure to have your levels tested and retested after you begin supplementing under your doctor's guidance.

The main consequence of vitamin D toxicity is a buildup of calcium in your blood (hypercalcemia), which can cause symptoms such as poor appetite, nausea and vomiting. Weakness, frequent urination and kidney problems also may occur. Treatment includes the stopping of excessive vitamin D intake.
http://www.mayoclinic.com/health/vitamin-d-toxicity/AN02008

 

[cmccormack5]

Little update if anyones interested. Abscesses went away about 2-3 weeks ago, dont really remember. Had an MRI yesterday after some more discomfort, turns out that the abscess is back and bigger than the previous ones haha. Just my luck. Meeting with the surgeon on Monday. Probably will end up having the surgery on Wednesday? Almost looking forward to a relief from this. I met with the surgeon just in case a few days before thanksgiving and he said the surgery would be a laproscopic resection. Hopefully all goes well. the unpredictable life of crohns continues ahhaha.

 

[catherines.pickytummy]

Wow I had never thought about it that way, however I have only been aware of my issues for a little less than 1.5 yrs. However I noticed it the oppositely. I have had bladder infections since I was 5 and I notice now that hrs after my abdominal pain starts my bladder pain begins. I have brought it up with my GI who wasnt concerned about possible connection (I am no longer seeing him for reasons like that).

And Im wishing Chris a speedy recovery! I am ashamed that I have been such a baby about my issues. Your story is very inspiring and I am making a pact with myself to be more positive. Thank you for sharing your story!

 

[cmccormack5]

Wow I had never thought about it that way, however I have only been aware of my issues for a little less than 1.5 yrs. However I noticed it the oppositely. I have had bladder infections since I was 5 and I notice now that hrs after my abdominal pain starts my bladder pain begins. I have brought it up with my GI who wasnt concerned about possible connection (I am no longer seeing him for reasons like that).

Bladder infections and abdominal pain can totally be related haha. And ive had this in the past 2 months. I presented with cramping every time i urinated, all doctors except my GI thought it was a bladder infection or something, but it turned out my abscess was pressing on my bladder. sometimes bladder and intestine adhere which causes rough situations too.

And im sure youre not being a baby about it, i think i just have this outlook because its how ive grown up. Im sure i wouldnt be like this is i was diagnosed a few years ago.

Good luck!

 

[***Lisa***]

Little update if anyones interested. Abscesses went away about 2-3 weeks ago, dont really remember. Had an MRI yesterday after some more discomfort, turns out that the abscess is back and bigger than the previous ones haha. Just my luck. Meeting with the surgeon on Monday. Probably will end up having the surgery on Wednesday? Almost looking forward to a relief from this. I met with the surgeon just in case a few days before thanksgiving and he said the surgery would be a laproscopic resection. Hopefully all goes well. the unpredictable life of crohns continues ahhaha.

I hope your surgery goes well next week and that you have a speedy recovery! Better days are ahead!