New Here:) Diagnoised in 2010

[Healing Faith]

Hi Everyone.... Reading everyone's posts today... Makes me feel happy and sad nervous and anxious all at the same time.

I am 38 years old, mother of 3 beautiful children. My story starts back nearly 3 years ago....

For many years 7-8 I have had what I call my Dads bad stomach. I seemed to become more and more bothered by oils, fatty foods, starches etc. I just thought it was bad genes lol....

A surprise washroom visit one day revealed a ton of blood in the toliet and
BM. I never suffered from any D just a normal nearly once a day girl. It took a bit to stop the bleeding .... Very scary to see for the first time ....

My family doctor is fantastic... Because of family history of bowel cancer he sent me in for a scope Dec 2010. Wasn't that the most fantastic preparation ... Felt like I lost 10 lbs lol.... Clean as a whistle.

The doctor at the clinic was what appeared to be very shocked to see me when he opened my curtain before the procedure. I was apparently at 36 too young to have Crohns.... Well this doctor woke me up during the procedure to show me what I thought was a video... But it was actually my insides .... He explained to me (at that time very high on drugs) that this is a very unhealthy bowel
Showing me ulcers all over and taking biopsies along the way... At my follow up appointment I asked so how much of my bowels are affected with crohns... His answer was all 5 feet of my large bowel... I almost fell off the chair in shock ....

He put me on Salafock (however you spell it). That medicine felt like poision in my body.... I had a lot of bleeding, D, no energy and such bad abdominal pain. After a month I stopped the Meds.

Seeing a herbal shop I started on live bacteria I take each night and licorice root extract (chewable) I cleanse each am with freshly squeezed lemon juice in water and take my vitamins and energy shakes and bars... Always eat quite a good diet lean on carbs. The bleeding went away by 80% I felt great.... Scope in Dec 2011 showed that I was in remission although specialist did not agree that my natural Meds worked...

All has been fairly good ..... until about 2 weeks ago... It started with 2 eposides of what felt like was my throat closing up for no
Reason, now i have had D , pressure in the bowel, constant pain in abdomin, gas, belching and hiccups all the time, my stomach is also makin the wierdest noises. I am tired also, dizzy, muscle cramps in legs and front of feet and toes. I have lot my appetite each time I eat I have extreme pain hiccups and burps and cramps... today sharp pains come and go as well in my intestines...

I am not sure what is going on.... I changed nothing in my diet or natural medications....I also have an issue with one of my adrienal glands for 10 years too much aldosterone... But I don't feel this has anything to do with these symptoms.


My specialist moved my appt up to Oct 9th.... Just wondering of anyone here has experienced anything like this. I don't understand how this all started out of the blue... I like natural Meds I don't respond well to prescription medications. (specialist LOVES me lol)

Can anyone help? I am staying strong in mind... I do Reike, meditation, massage, spiritual healing circle monthly.... But I find this pain is just really getting me down and not allowing me to do what I want to accomplish each day... Brought to tears 3x the past week... This is not at all like me....

 

[Jennifer]

Hi and welcome to the forum!

I know you don't want to take medication and I understand but no matter what, since you have a diagnosis of Crohn's already it would be best for you to have regular testing done to know what's actually going on inside. First tests that come to mind are an endoscopy (since you're having upper GI issues), a colonoscopy (since you have a history of issues with your colon and have abdominal pain), a small bowel follow through might also be good to check the small intestines (and anything the upper scope misses) and have blood work done to check not only for inflammation but to also check your vitamin levels as being low or deficient in some can cause some awful symptoms. So check iron, B12, vit A, C, D, folic acid, magnesium, potassium, and zinc as these can all be low (I'm probably forgetting one or more).

Once you and your doctor have a better understanding of what's actually going on inside then you two can talk treatment options. Your current treatment plan may not be enough for your condition. Personally I do not use alternative treatments and have been on medication ever since my diagnosis.

 

[David]

Greetings and welcome

I'm so sorry to hear about your flareup, that must be terrible

Based upon everything you're describing I'm guessing you have had smoldering inflammation that was slowly causing scarring in your small intestines and you now have a stricture which has led to small intestine bacterial overgrowth and vitamin/mineral deficiencies which has created an ever-worsening symptom loop.

My guess is a CT scan or MRI along with endoscopy/colonoscopy are in your near future.

I'm a HUGE fan of alternative treatments and supplements but only when done in conjunction with more traditional treatments. I'm of the opinion that this disease needs to be hit from all angles and monitored extremely closely.

Hopefully I'm wrong with my guess but please keep us updated. If the pain gets really bad please head to the ER.

*hugs*

 

[Healing Faith]

Thank you for your suggestions. My specialist believes to only scope when symptoms I don't think they have tested any vitamin levels. I had my last scope a year ago ... How often do you think I need to have them done. Can thinks inside go from remission to flare up in no time at all?

 

[Jennifer]

Oh yes inflammation can act rather quickly and chronic inflammation can cause scar tissue to build up along with other possible complications like fistulas, abscesses etc. A year is plenty of time for things to get worse especially when your disease may not be managed the way it needs to be.

When in remission people tend to have regular scopes done as maintenance every 3-5 years. When you're not quite in remission though it could be as needed (depending on symptoms) to once a year. Since you're going the more alternative route and are apparently having symptoms and did have some bad inflammation just a year ago, having a scope done once a year may be a really good idea (along with the other tests mentioned above in both posts since you're currently having symptoms in both the upper and lower GI tract).

 

[Healing Faith]

That's what I thought... Last year he didn't want to do 2nd scope I reminded him that when he found crohns in me in 2010 I didn't have symptoms other than 1bad bleeding session.

I heard years ago u have to be your own advocate on your health I truly believe that. Thanks again

Have a great week!

 

[Jennifer]

Also if you feel that your GI isn't being very proactive when it comes to testing and treatment you may have to try seeing someone else (second opinion) so you can get the best possible treatment.