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Crohn's Disease Forum » Your Story » Success Stories » Let's hear success stories!


 
06-21-2011, 09:25 PM   #1
David
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Let's hear success stories!

Do you have a success story to share? Inspire us! Please start a new thread in this forum and share your success story

This forum was created on 06/21/11 at 9:20pm central so if there aren't many success stories yet, it's only because it's a new forum. We know there's plenty of success out there, let's hear about it!
07-15-2011, 04:12 AM   #2
Robertduke
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Thanks for keeping this forum.
07-16-2012, 11:11 AM   #3
suzypain
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I no longer have pain from Crohn's Disease. I went to a natural practioner who helped me a lot. Another big factor was reading the book Self Healing Colitis & Crohn's by David Klein, Ph.D. This is a must have book for people suffering from Crohn's. Wonderful book. Each morning now I have my green drink made in the Vitamix. Today it was frozen bananas, fresh pineapple, some collards from the garden, spinach, almonds, flax seeds, celery (celery is very healing), almond milk and a few ice cubes. Delicious and healing. I sometimes use pears, apples, etc. Mostly organic. The rest of the day I'll eat salads or stir fry and other things. I eat a lot of Qlunoa too.

I do eat eggs and sometimes chicken.

Just wanted to help someone else.
08-09-2012, 06:37 PM   #4
Avery
 
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I too have been able to mostly minimize the pain & problems that come with Crohns.
Through natural approach & Diet. Aloe Vera Gel (fresh) if possible, will take away pain within the hour, when a flareup starts. Also carrot juice will help settle down a flareup when nothing else will. Regular white eggs used to cause a flareup so I stopped eating eggs for yrs until trying "Range Free veggie fed" brown eggs.
Also Hamburgers & too much beef can be very hard on anyone with crohns. The red meat takes too much work for your intestines to digest.

Last edited by Avery; 08-09-2012 at 06:41 PM. Reason: missing information
08-09-2012, 06:54 PM   #5
izzi'smom
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My daughter has been having fantastic success on Tacrolimus and Bactrim since April. Her disease was diagnosed 14 months prior, and she was termed "refractory", or resistant to therapy with multiple hospitalizations and fairly poor quality of life. While microscopically she has mild chronic inflammation (meaning I am sure we will have to adjust treatment at some point in the future), I am calling her a success story because she is able to live her life as if she didn't have Crohns.
We also have been utilizing chiropractic care and a few other more natural approaches.
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Angie, mom to Izzi,10 Crohn's Colitis 1/11 prednisone, entyvio since 2015 Tried: Tacrolimus, Bactrim, simponi, Levsin, Prevacid, Prednisilone, Humira, Remicade, EN via ng, vancomycin, Pentasa, carafate, Sulfasalazine, Cortifoam enemas, dietary changes, fish oil, VSL#3.
08-09-2012, 11:11 PM   #6
Avery
 
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Wow what a beautiful child. How old is she ? I have 3. Please continue to pursue more natural approaches for your daughter. Since there are many severe side effects to those medications. I used Sulfa based medications, similar to Bactrim back in 1990. It still made me nauseous and not able to perform at work, even though I ate before taking them. I was on the third med. when an older gentleman referred me to Aloe Vera for intestinal illnesses. Believe it or not that one plant (Aloe Vera), I've been using since 1990 & it has been one of the most important natural approaches for my Crohns. Aloe Vera is a natural Anti-Inflammatory, it will actually remove severe pain during a flareup.
08-14-2012, 05:22 PM   #7
mnsfilho
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Location: sao jose dos campos, Brazil
Dear all,

Our son of 19 years old had crohn disease. Recently God gives the bless to know a doctor with a different approach to treat Crohn disease ( based on very news technical data and studies ). Crohn disease has as condition two factors that must be present simultaneously: stress and lack of Vitamin D. Stress we can't avoid but correct level of Vitamin D is really easy and had produced in our son almost immediately relief of all symptoms of disease 9 after 3 days of treatment ). He stopped all medicines and since then now as a normal life.
Lack of vitamin D is mainly due to the fact that human are living, working and protecting themselves from sun. Expose yourself
I invite you search on internet all medical works ( thousands ) that shown benefits and cure for mostly of degenerative diseases.
You may ask why hardly you hear this treatment: it is new ( but solid and technically based ) and it is cheap. It attacks the cause not the consequence of disease. When you treat the cause you are set free.. when you treat the consequent you became slave of medicines..
Please check out by yourself and ask your doctor about treatment with vitamin D .
08-18-2012, 02:45 PM   #8
Northern BC MOM
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Question on vitamin D as a cure.

How much do you take?
08-18-2012, 02:55 PM   #9
mnsfilho
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I am not a physician therefore I can't recommend a dosage of vitamin D. What I can say is that when you expose to sunlight for about 20 - 30 min it helps you to synthetize about several thousands units of vitamin D, taht will be impossible via normal food. when you have a high dosage of vitamin D also is quite important cut from your diet calcium because it may cause injuries for your kidneys, and not lesss important drink at least 2 liters of water per day. This diet with low calcium is only during theperiod of high dosage of vitamin D ...It is the simplest, efficacy and painless treatment one may take. ASK YOUR PHISYCIAN for more info or look for one that knows about it.
08-18-2012, 06:15 PM   #10
rygon
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I had a real good poo last thursday
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08-18-2012, 06:43 PM   #11
michaelearnest
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A Crohns doctor told you to stop all medications? To stop maintenance drugs?
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Michael Earnest - "Never Give Up on Your Gut"

Original DX - Crohns - 1987
Sulfa zine, Asacol, Pentassa, Remicade
Salofalk
Cal/Mag 125mg x2
Vit D 1000iu X 4
Ultram 50mg (As needed)
Resection Surgery - 2006
Currently on 50mg Imuran

Facebook Page - Kicking it for Crohns - Please go Like my page
http://www.facebook.com/pages/Kick-i...87635074683468

Email - [email protected] - Email me with any questions - 25 years experience!
12-02-2012, 11:26 AM   #12
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Hi All! So great to find this forum/website! I have been driven to reach out to others to share my experience, sucess, and hope, so far, though was waiting until I learned to manage ALL of my symptoms . I have since been driven to share the positives of what I have gained, thus far in my 15+ years of trudge and resolve. I still continue to, with high hopes, resaearch and drive towards further sucess of one of my Crohns symptoms, though am so grateful for the daily gift and drive towards awareness and holistic symptom management.

I have never taken any immune modulators (due to non conformity standards), though did succumb to steriod and asacol unsuccessful management of my symptoms of inflammation, bleeding, pain, early on. I since havve learned to manage Sx very successfully, via attentiveness and trial and error (exhausting as it may be, at times) towards what I put in to my body. I have learned what absolutely creates a flare-up, and how to consistantly manage them (in a healthy way), as well. I do find daily challenges w/ vanity and wearing this portable toilet, of sorts. Though, have learned I can manage, one day at a time, and able to continue to help others heal and strive toward better health.

I look forward to crossing paths with others who may benefit from my paths' experience and resolve! Stay positive, have faith, never give up hope! It has been my experience that for every question, there is an answer (at least one)!!
03-25-2013, 09:56 AM   #13
Grateful4Pancakes
 
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daughter has been symptom free since early Sep 2012! completely normal bloodwork Dec 2012! She was diagnosed June 2012 with probably 18 mos of active Crohn's Disease and 6 months of obvious symptoms. was on prednisone all summer. Started the SCD in desperation in August when faced with possible Remicade. Big symptoms cleared within 30 days and she started to report "feeling awesome" by about Thanskgiving.

I highly recommend SCD or Paleo. We do use raw cocoa, so I guess you should say we are on the GAPS diet.

Very, very happy. Still taking Pentasa but not really sure it is necessary; just being cautious.

Take hope parents: try the diet, no need to abandon your meds for it. It is not either/or. Do what you feel is best for your family. xxoo
04-03-2013, 05:25 PM   #14
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Found a great combination that works.

Context: I typically used the toilet before work, twice before lunch, after lunch and just before leaving for work [and at night again].

I've since tried using mebeverine with Asacol and Asiothioprine at night and in the morning and I now sometimes forget I have issues during the day [apart from when I have to take the tablets]. The effects do start to wear off later in the evening but by then I'm on my way home.

Please try it everyone.
04-03-2013, 06:42 PM   #15
Avery
 
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User6d63d00
That is great that you have found a combination of meds that is actually helping you. How long have you been taking these medications ?
Do you notice any negative effects from any of them ?
Also do you refrain from eating or drinking certain foods, or are you able to eat anything while on these meds ? I dont drink milk or coffee because they have caused flareups.
06-19-2013, 02:04 AM   #16
sandrad
 
Join Date: Jun 2013
Location: baton rouge, Louisiana
Hi. My name is Sandra. I was diagnosed with Crohns when I turned 40. Most horrible experience of my life. I was under a lot of stress at the time...Not what you need when you have Crohns. When I was diagnosed, I had to go to the hospital. For seven days, I didnt know I was alive, and when I figured out I was, I didnt want to be. It was something that I didnt think I could handle. I suffered with it for 10 years. I discovered what I could eat and could not. I rid my life of at least part of the stresses that bogged me down. I got involved with an all natural health company and started researching (I am a registered nurse)...I think I found my miracle. I have not put one pill in my mouth for crohns nor have I had any infusions. I feel like a new person. Totally asymptomatic. Yes. I think it is important to follow my Dr's advice and stay under his care. Natural does work. I found the company and not only have I treated my crohns, but my entire body has benefited. I am a new person today.
09-14-2013, 01:11 AM   #17
kat-y
 
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Location: United Kingdom

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I think this is a really important thread , as I know I certainly tend the use the forum more when my health dips but while it's good (like now) I just go about my life and forget about it. Good for those newly diagnosed to realise that may be why people may be posting updates & questions, but remember that maybe we forget to write about it when we are feeling good ! Good context and reassuring for those maybe reading & panicking ... it's a great place to come when needing help but also to say things are settled & good..
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Crohn's dx 2010
Resection 2010
Tried : Pentasa,Prednisolone,Cipro Flaxyl
Now on Azathioprine, VitD, B12
09-28-2013, 12:57 PM   #18
Kev
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Yesterday, on the local CBC News Halifax show on TV, they ran a story about a young man who successfully swam the English Channel. He had attempted the swim last year, but adverse weather in the area made any possibility of success impossible. One of the remarkable aspects of this story was that the swimmer wasn't really a swimmer. He did know how to swim, but had never been involved in distance swimming before. He trained for less than a year, and prepared by taking cold showers or soaking in ice baths. His story had another remarkable aspect to it... he did it to raise money/awareness of IBD. In particular, Crohns... because he suffers from it. I didn't have an opportunity to PVR or tape it, and my search of local CBC news items on their website failed to provide me a link to the story. I've e-mailed them, asking for further details or a possible website link that I could post here. I'm hoping to be able to add that to this thread in the future.

Anyone who knows more about this, or about a link, please feel free to add to this post.
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KEV

Dx'd July, 2006
Meds: Flagyl, Cipro, Pred, AZA.. to no effect
Low Dose Naltrexone Nov 2007 - May 2014
Remicade June 17th, 2014
09-30-2013, 03:16 PM   #19
Kev
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OK, the CBC responded to my e-mail requesting a link I could post here to show what someone with Crohns can do. Unfortunately, they provided a link to the entire newscast, so if anyone wants to fast forward to the item on Bradley Farghuar of Halifax, a 27 year old man with IBD who managed this impressive feat despite his disease, it can be found around the 18:30 mark. Needless to say, this old Crohnie isn't about to jump in the channel.. either here or in England. And, if you are likewise in the same boat, ... then.. if you've got a boat, you don't have to worry about swimming the channel either. Seriously, this is meant to be inspirational... not for anyone whose current condition may cause them to feel bad about themselves... you know what I mean? Let us congratulate a fellow Crohnie for a tremendous job, not put ourselves down because we can't duplicate it. Anyway, here is the link that CBC provided... from September 27 2013

http://www.cbc.ca/newsatsixns/
12-30-2013, 11:55 PM   #20
Poppapiz
 
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Location: New York
Diagnosed at age 8. I could hear my mother talking to the doctor, I was to be admitted for testing. What else could an 8 year old do but to cry. I still can't forget the day they stuck the feeding tube thru my nose and down my throat. Had to grow up fast, responded well to meds most of my life. Prednisone was a kick, I went from not eating to having the fridge and all contents wiped out. Things were steady for the next 10 years. Was involved in baseball and hockey. Nothing prevented me from living a life.

Disaster struck around age 19, uncontrollable flare up. In and out of the hospital during the summer of 97. Meds were failing. Finally in the fall the decision was made by my doc to admit me to hospital and preform surgery. Before entering mt Sinai. Nothing I ate stayed in my system. My hair was literally falling out by touch, body odor, massive back pain. I had every symptom in the book. I had no strength, the day I entered the hospital 98 pounds, I needed a wheel chair, my blood count was 5.

1 full month was spent inside the pediatric unit of mt Sinai. From that time till now I could never re pay the people who helped and cared for me thru the days/weeks.

The surgery was risky. I can't recall how many blood transfusions I had before the operation but I got very familiar with the word "pick line". Things were good for a few days but then I had a hiccup. Complications set in, I developed sepses. The plan was this: I get re opened up, drained out and given a colostomy bag. I was so sick and weak and even though my inflamed piece of intestine was removed my body was unable to begin healing.

With stoma in place things made a dramatic turn for the good. Three months and a reversal was the plan. For three months I stayed within my home, only leaving for Xmas eve, check ups and therapy. Three months, getting healthy, working out, letting my hair grow! Three months and I walked back into mt Sinai. Three days later I walked out, normal and re born.

Three years later I graduated college and took a city job. Even went back and got a masters. Eventually have been married and blessed with two beautiful kids. My prayers are they never have to endure my journey although the percentages state they might.

I've been on 6 mp, Prilosec and remicade steady since 2007. My only issues since 2003 have been rectal abscess. No problems since 07.

That's just a little bit about me....
12-31-2013, 12:16 AM   #21
guitarjamie03
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I was diagnosed in 2012. It started as an abscess in my pelvic cavity and a fistula in my bladder. I found the best doctor, but he is now fighting cancer so now I send him support. My doc got me on Humira, Aza, B12, and vitamin D. But it was not until Feb of this year (2013) that I had surgery to resection my colon and remove the fistulas. The surgery put me into remission! I still have days when I don't feel well and the Humira really knocks me out, but overall, I feel great!
03-09-2014, 12:44 PM   #22
HealthyLady
 
Join Date: Mar 2014
Location: Oxford, United Kingdom
Hi - I suffered with Crohn's for 10 years and cured myself after reading the book Tummy Love and following the advice. I know no one wants to hear this but inflammation in your intestines is self inflicted. If you live a healthy life, you'll have a healthy body. Simple really but I wish I'd known it years ago! It would have saved me so much suffering and pain. I now follow an anti inflammatory diet and lifestyle and have no symptoms whatsoever. I have recently had a health check up and there is no evidence of any inflammation in any part of my digestive tract. So much for my doctor telling me I would be ill for the rest of my life!! Eating and living the anti inflammatory way worked when steroids never did! Good luck to you all. I really want to share the message that complete healing is possible. Not just in some cases but in every case! Much love Stephanie x
03-09-2014, 12:55 PM   #23
Amy2
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Son has been in remission since May and he's feeling pretty good these days. Still following the SCD and taking Pentasa 3 xs a day. I think he's grown 3.5" inches since he was diagnosed. He is now 5'10.5". I won't be surprised if he reaches 6'.
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Three passions, simple but overwhelmingly strong, have governed my life: the longing for love, the search for knowledge, and unbearable pity for the suffering of mankind. Bertrand Russell
03-22-2014, 09:05 AM   #24
jules23
 
Join Date: Dec 2013
Location: london, United Kingdom
So great to hear all these people conquering Crohns. It is very true that when we are feeling great we don't often find ourselves on this site so its great to hear people's stories especially those who have achieved it through diet and healthy living. I also think this site really helps offer and advice for when we are feeling alone with this disease and need support.
05-05-2014, 11:06 PM   #25
Jackson2
 
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My Son is 13 and was diagnosed 4 years ago, I have been an enabling mother until now. and what I mean by that is that i gave him whatever he wanted to make him happy such as ribs burgers etc. I now have stopped enabling my son to be sick. He is on a strick diet much like the paleo. Actually the whole family is on the same diet. I am scared that he has false hope but I am hoping to god he gets better. I will keep you posted as I want to believe he can be crohns free. We started the diet a week ago hes not doing very well as of yet very tired. My prayers are hopeful.
05-06-2014, 07:39 AM   #26
D Bergy
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After my initial surgery to remove a stricture, I was diagnosed with Crohns. My first choice of treatment was LDN with several antiinflammatory supplements. Did good for over two years. Then flared badly and had another surgery for fistulas. Worst experience in my life. Never had pain like what the infection caused.

During that time I determined that mycoplasma pneumonia was likely what caused the fistulas. Too late to avoid surgery.

I decided to take my doctors advice, which went against my own judgement, and try Imuran. It never helped with my post surgical inflammation and the mycoplasma started to increase again. I can tell by Pneumonia that starts setting in and increased inflammation.

Finally, I took what I had learned about the disease and the suspected pathogens involved and used frequency treatments in an attempt to selectively remove these pathogens. I had quite a bit of previous experience using this method for my wife's Lyme Disease and coinfections such as Babesia, Bartonella, and more recently Brucella.

The weakness on this method is you need to know exactly the pathogen you are after. I missed mycoplasma before. I had already determined MAP, E-Coli, H-Pylori were involved with my particular case.

Treating all of these with the addition of the mycoplasma brought me out of my flare in under a week. While not cured, as I define cured, it appears so far that it is working very well as a treatment.

BM's went down in frequency, mucus reduced dramatically, my gums which used to bleed healed and are normal again. Pneumonia immediately went away.

Time will tell if this holds over the longer haul. I do know I cannot detect any symptoms for the first time since my first flare. A work in progress for sure, but I will keep using this method as long as it keeps me off of the operating table.

Dan
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Nothing I post here is to be construed as medical advice. I am not a doctor or health professional.
They are simply my opinions.
08-22-2014, 04:12 PM   #27
Keith12
 
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Location: Las Vegas, Nevada
Hello everyone, My name is Keith and I have or should I say had...suffered from IBS, Crohn's Disease and Acid Reflux for over 17 years up until about 12 months ago. Let's say that I went from weighting 165lbs to 187 that is what I weighted last night! Yes I have gained over 20 lbs and it really feels good for a guy who thought he may leave here due to these horrible Diseases! I know a lot of you my be suffering but there is hope and you can do the same thing that I did!

I first changed my diet and stop eating all that stuff you and I know you should not eat when you have any these types of diseases! Secondly I discovered, three words that really changed my life that was (Honey In Capsules) look it up, and don't knock it until you try it...and last but not least here are three more words that I discovered down the road that help kill all of that bad bacteria that is related to all of these diseases...Oil of Oregano! With all three of them I just mention combine I am 99.9% cured of all three of these horrible diseases and I feel better then I have felt in years!

Now if you are a person that suffer from any of these diseases im sure just life myself you have tried everything you possibly can to find some relief. But what I discovered is you may not be trying the products long enough for them to get into your system and really work for you! I know I was doing that same thing over the years until it got so bad that I had to just sit back, relax and find something that would work and I allowed to work. I know how you feel trust me but if you haven't tried what I have done, that has clearly changed my life....PLEASE DO SO!! Don't make excuses, just try it because if it worked for me, if just might work for you! But how would you know unless you try? I would like to thank you all for reading this and if you have any questions, please reply back to this post ok. Good luck and GOD bless!
10-28-2014, 10:13 AM   #28
steto
 
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Location: Los Angeles, California
Hello! New to the boards. I'm glad you're here. My story is purely anecdotal and based on a sample of one, but am I posting in the hope that it will be of help to somebody. I was diagnosed with Crohn's in 1986 after what I am sure is the typical onslaught of symptoms. The drug my doctor gave me at the time -- was it Azulfadine? Not sure -- controlled but did not eliminate the symptoms. A change of meds about ten years later -- to I think Asacol -- brought the symptoms completely under control, while causing uncomfortable constipation that made me cut down on the dose to the point that Crohn's symptoms began to reappear. At about the same time, just as a matter of taste, really, my wife and I switched from cooking with butter to cooking with olive oil and I developed more than a taste for it: I started using it on everything -- every kind of salad, including tuna and egg salad, all our cooking, savory baked goods, drizzled over avocado slices, even a dash on a bowl of yogurt -- to the point that our family was going through a liter of oil a week. And it was around then that my Crohn's symptoms declined and then disappeared. I stopped taking the meds altogether and the symptoms have yet to come back. I had been going for my yearly colonoscopy, with the doctor who diagnosed me in '86, and one year when I came to after the procedure he had a puzzled look on his face and said "Your colon looks like a normal colon." He had no explanation for it, and when I asked if it might be the olive oil he of course gave me that tolerant smile adults give to children with imaginary friends. I think it's been twelve years since I've had symptoms. My doctor switched me to a colonoscopy every two years, though another GI guy says I should be down to every five. I'm due for my biennial right now and I'm pretty sure I'll go for it. I should add that I also eat a huge amount of fatty fish -- either sardines or salmon or trout almost every day, always prepared with olive oil. As I said, anecdotal, not scientific, but my doctor has no other explanation for why I might be in remission for this long. And olive oil being as delicious as it is, and as healthy in so many other ways, it certainly wouldn't hurt to give my approach a try. Does anybody else out there have a similar story?
12-23-2014, 07:42 AM   #29
danim78
 
Join Date: Dec 2014
Location: Manchester, United Kingdom
Hi, I just wanted to share my story, i remember hearing lots of horror stories about Crohns when I was diagnosed aged 21 (15 years ago) & feeling very depressed about how my life may change. I was basically very poorly at this time as my Crohns had gone un-diagnosed for some time & I developed an abscess. I had a temporary illeostomy & a reversal 3 months later, it was a hard time but family & friends were great, also I had an amazing surgeon & the nursing team were great (despite being over worked & run off their feet most of the time I was in hospital).
I managed to adapt my life around constant toilet trips, which was a nightmare at times but manageable & I even travelled around Thailand & Australia during this time, I took Mesalazine for many years & went by my mum's advice of following an old fashioned diet, ie avoiding packet meals (which I had lived off at Uni around my diagnosis).
I stopped drinking cider & lager (a staple diet of a uni student back then) & instead drank Vodka; I was advised to avoid alcohol completely but found this thought depressing (at 21), basically I tried to adapt my lifestyle so I could continue living life to the full. I also held in my head my belief that; "following surgery they had cut the bad part out & there was no reason it would come back."
I am now 36, have had a healthy baby, now due a 2nd baby, I stopped taking Mesalizine 7-8 years ago & now tend to have normal bowel movements daily, as opose to 5-6 times a day. I have no pain, I do get tired but that may be down to being a working mum rather than related to Crohns & if I get any illness it tends to affect my bowels also so I guess this is my Achilles heel.

I expect everyone's journeys are different, I wish I could go back to my 21 year old self & tell her it isn't as bad as it seems. I think Drs have to tell us the worst case scenraio. Also people tend to write when things aren't great (like someone else posted on here). I think this thread is great & I hope my story gives someone a different persepective if they are going through a difficult time right now..
12-23-2014, 08:38 AM   #30
D Bergy
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Join Date: Apr 2007
Just an update.

Have not really changed my treatment much over the last 7 months. I did notice some sensation iny lower right gut while running streptococcus frequencies. Lots of strep infections going around right now.

My wife, who was getting a sore throat, possibly from strep, felt sensations in her guts also on the opposite side. Her sore throat is gone now.

Not sure if strep is yet another component of Crohns, or just an unrelated coincidence, but I will be treating for it either way.

Had my B12 & D3 levels checked. B12 good, D at 50. A little lower than my 60 to 70 target but good.

All other blood work normal.

Other than the expected effects from having my iliocal valve missing, I am 100% and even in better shape than prior to my problems with Crohns. I could not ask for more. Hope it holds.

I hope everyone has a good Christmas and a great new year.

Dan
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