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Hihi

Ahoy,

Here's my story, it's a bit long and boring but i wrote it as an introduction and for my own personal reasons... kinda like a diary i suppose.

Where to start? Well I was officially diagnosed with Crohn’s Disease in November of 2006 at age 23. Looking back my first clue that maybe something was wrong was when I became constipated twice, maybe a year apart, starting a few years before diagnosis; however, this could have been unrelated. Then I started seeing blood in my stool, but no other symptoms were present, and after ignoring it for a month or so I finally went to my primary doctor who suggested I have a colonoscopy. They concluded I had Crohn’s Disease, Crohns-Colitis to be specific. Like most I had never heard of Crohn’s, and to be honest I kind of ignored it to an extent to until somewhat recently. I ignored in the sense as I always believed I would be ‘OK’ and never foresaw how bad I could be affected, thus I did little research etc.

After diagnosis I was prescribed Asacol, however it never seemed to have an effect as the amount of blood steadily increased even when increased to 12 pills per day. Then a few months later I had I first flare which symptom-wise consisted of a further increase in blood, mucus, and the number of times and urgency which I had to use the bathroom. At this point I had not experienced many of the typical Crohn’s symptoms such as diarrhea, nausea, significant fatigue, loss of appetite, pain, etc. I was aware that they were common among Crohnies but never thought I would experience these problems- out of ignorance and or hope I suppose. Anyways for my first real flare I was given Prednisone, and wow it worked great! It wasn’t until I was on Prednisone that I realized just how far from ‘normal’ I was feeling because I felt better than I had in maybe years.

After the flare passed the next 6 months or so were pretty uneventful, except for a continued increase in the prevalence of blood, these months also coincided with summer where I typically feel better. Then the following winter of 07-08 was steady flare, prednisone, flare, Prednisone etc until summer came and my ‘flare symptoms’ decreased and my only real issue was blood-however there was a lot. So in June my GI prescribed Azathioprine but I soon became violently ill from it and stopped taking it. Then this August of 2008 everything changed and I experienced what Crohns is really capable of.

What seemed like overnight I was hit with violent, dark-black, bloody diarrhea were I was going to the bathroom twenty plus times a day and sometimes ten minutes apart. Along with it came extreme day-long nausea and dizziness, loss of appetite, and general stomach pain. Soon I was only getting 5 hours of sleep a night from always having to go and stress. This went on for two months where in the end I lost 30 pounds, became close to anemic, and was in general dangerously poor health. All this time I was on Prednisone, around 60 mgs per day, but it didn’t really have an effect until I was laid-off and was able to get some rest and recover; somehow I was still able to work 50 hours per week during this but in retrospect I really should have gone to the Emergency Room. In addition it took five months until I was able to sleep for over seven hours straight.

Because my conditioned worsened so quickly and violently my GI and I were looking for answers. We did a CT scan which showed what looked to be inflammation in the small bowel, so he did a Small Bowel Enteroscopy in which he said there appeared to be evidence of past inflammation there. He also discovered I have Gastritis. Also did stool samples and Flexible Sigmoidoscopy. However he never really gave answer why I became so ill so quickly other than simply the progression of Crohn’s. After a couple months of recovery with the aid of Prednisone and rest I finally gained my weight back along with my health.

Then in November just before beginning my tamper down from 60 mgs I started Humira biweekly. By late January and weaning off of the Prednisone all of my symptoms were coming back including the diarrhea and nausea so I started taking Prednisone again the Humira seemed to have no effect. At first the Prednisone I got rid of my diarrhea fairly quickly but the nausea and loss of appetite persisted and I was going to the bathroom about 6 times a day but nothing was being ‘produced’ other than a little blood or a minute amount of stool. Then finally after about a month at 40 mg I finally had a ‘breakthrough’ and that is literally how it felt. I passed what appeared to old black stool, follow by ‘fresh’ stool a few minutes later, and immediately felt soooo much better and the next day my nausea was gone, appetite was back, and I felt great. I’m wondering what could have explain this? a blockage? any ideas?

My ‘breakthrough’ was only about a week ago, and I’m still at 40 mgs of Prednisone, but this week I just gave my first Methotrexate Injection… and oh boy…does it ever wipe me out! but that’s another tread...
 

mikeyarmo

Co-Founder
Welcome to the forum BillthePill!

Glad that you are having some recent success managing your disease. When did you start your supplement and diet regime? You mentioned the drugs, but never mentioned how you feel those things had any affect on your condition or how you came to choose to include these things in your disease management.
 
Hi mike and thanks for the welcome!

I started the diet this past October and have been following it closely ever since. Unfortunately it hasn't seemed to have had much of an effect, however I never made the yogurt for the diet until just last week and I also added a probiotic to my diet... so I’m kind of starting round two- with the implementation of the yogurt and probiotic. I still have some hope for it. Even down the road if I determine its not working I still learned a lot from it in general, and would suggest to anyone new to the disease to try this diet, or others designed for IBD, before your symptoms worsen- something I wish I had done because it becomes increasing difficult of isolate what it working and what is not once you start taking so many medications.

I started taking the ginger and tumeric supplements starting month ago once I was coming off my Pred and realizing the Humira wasn’t getting it done. Can’t tell if either are helping but also cant say they aren’t… So far in my two plus years with this disease the only medication, treatment, etc that has provided me with any relief for sure is Prednisione but I just started Methotrexate last week so maybe this is the one.

Cheers, BillthePILL
 
HI,

It sounds like you had a bad blockage...Are you scheduled for another colonoscopy to see if any damage was done there anytime soon? May be a good idea.
 
I have an appointment scheduled with my GI on the 11th and will definitely plan on desribing this to him.. among other things. I had never had that type of feeling before so assuming it was a blockage what type of damage could have been done? I think i need to do some research.
 
hey bill
i dont really have any answers to your questions as ive never had a blockage before.
i also have taken methotrex and humira, the humira never seemed to help but the methotrex did. i took it in conjunction with remicade, and those two drugs gave me somewhat relief for a few years.
i was also on the SCD for a time! i started Aug 2008, but by Novemeber i had dropped 30 lbs bc the flare got so bad and decided that i needed to resume a regular diet instead of resticting what i could eat.
welcome and keep on with the questions! theres a lot of people here with good advice
 
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