Crohn's Disease Forum » Your Story » Just Hoping For A Few Friendly Faces To Share With And Get Guidance From

07-23-2012, 09:53 PM   #1
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Glitter&Iron's Avatar
Join Date: Jul 2012
Location: Olympia, Washington
Just Hoping For A Few Friendly Faces To Share With And Get Guidance From

My journey with Crohn's started nearly 5 years ago, at the age of 24. I had been morbidly obese since birth, pretty much. The first few months of symptoms appearing, I didn't have a regular doctor, but was told by numerous ER doctors and a couple walk-in clinics physicians that I just had heartburn. Unfortunately my large mass blinded the medical community to what was really going on.

When I insisted it wasn't normal for me to be vomiting every meal, continual excruciating abdominal pain, and to have blood in my stools, astonishingly I was still told to just take heartburn medications and that I'd be fine. I got so upset and felt so alone that I swore off doctors for a year. During that year, I dropped 200 pounds. I had always worn stretchy clothes, so I actually was unaware of my crazy-large weight loss (I figured I'd lost 30 pounds or so- it's completely bizarre, I know), until I happened to step on a scale-something I typically avoided-and was bewildered by the number looming back at me.

The first 17 months of Crohn's were pure hell-I had yet to be diagnosed, I lost an additional 62 pounds (totaling 262 pounds- I was 188 lbs. at my smallest), at that time I lived in a town states away from everyone I knew, I was scared I had cancer and was dying, and I couldn't physically work anymore and knew only a few people locally so I lost everything I owned-my car, cellphone, apartment- and ended up living in a homeless shelter for a few months. Absolutely the most terrifying time in my life.

The homeless shelter hooked my up with DSHS and I finally went back to see a specialist. That time around they took things incredibly seriously, probably because I had lost a crazy amount of weight in such a short time, looked like death warmed over, and had to be wheelchaired everywhere.

Over the last 3 and a half years since then, I've gained back 60 pounds from on and off again use of Prednisone. I'll lose 30 pounds or so and then gain it right back when I'm flaring. I've tried almost everything out there as far as supplements, steroids, run of the mill Crohn's meds, several biologics, and a plethora of specialized diets. I started taking Low Dose Naltrexone in the middle of April of this year and after about 6 weeks I felt AWESOME! For the first time since I first started experiencing symptoms I felt great. I started working out an hour a day, was eating a gluten-, sugar-, and mostly dairy-free diet, slowly regaining energy back, drinking a gallon of water a day(with my primary care doctor's approval).

Then 3 weeks ago I foolishly took Chia Seed supplements to help with getting fiber. Gluten free diets often lack fiber, and since I was feeling so well, I completely spaced checking to make sure the supplement wouldn't exacerbate the Crohn's. I have never made such a stupid, destructive oversight before and I'm SSOOOOO angry at myself because I have been in great misery the last 3 weeks all because for two days I took those pills before it dawned on me to check if they'd be bad with Crohn's.

I've been in bed for days and currently 1 Ensure is all I've managed to get down today, and I'm feeling pain from the Ensure. I don't know what to do. This pain is so intense, I'm starting to go loopy. Even when I've gone to the ER after not eating or drinking anything for 4 to 5 days in a row and being in intense pain, I always get sent home after I'm rehydrated- it's beyond me as to why I'm never admitted.

The Crohn's and UC are both classified as moderate to severe and I've been on Social Security since August 2010 due to the unceasing symptoms. Why would I never be admitted? My system needs a break and needs an IV drip for fluid! My specialist is a great guy and aware of my flare up, but just said to continue with 1 Humira shot every other week and 25 mg Methotrexate (pill form) every week. He doesn't believe in painkiller and doesn't prescribe any, and I've only ever had painkiller a few months throughout this whole 5 years, so I've learned to deal with the injustice.

I just want to be able to get out of bed (currently using a selfmade bedpan), drink without tormenting pain, and get some quality of life back. Thanks to anyone who read this fully. That is my story. Feedback and suggestions gladly appreciated

Last edited by rygon; 07-24-2012 at 03:36 AM. Reason: Put into paragraphs for easier reading
07-23-2012, 10:46 PM   #2
Jennifer's Avatar
Hi and welcome to the forum!

Is it possible to see a new GI? Even if he's a great guy that doesn't mean he's a GI that specializes in IBD nor a great doctor. At least he's trying out meds but it sounds like you may need more testing done to figure out the cause (or do you know? Its it inflammation, scar tissue, ulcers, blockage etc?) and make sure you're on the right meds for your condition. If its scar tissue then no meds will treat it and your best option would be surgery (they can stretch the area depending on the size but it isn't permanent) via resection or strictureplasty.

As far as pain meds go, lots of GI docs don't prescribe them. I get mine from my General Practitioner (I take Tylenol 3 but mainly for my arthritis). I wouldn't want to take it for abdominal pain long term cause to me that means that my condition isn't being treated properly. Plus pain meds just turn me into a bump on a log.

Are your doctors aware that you're using a self made bedpan? I think they'd do a little more work if they knew how much this is affecting your daily life.

Also, I doubt those fiber pills did you in for so long. My guess is you had a narrowing already and the fiber just speed things up making you feel much worse. Fiber causes a bottleneck effect when a narrowing is involved making things back up. Keep in mind though that fruits and vegetables contain fiber as well and steaming them while removing the skins and seeds will help you tolerate them better.

I'd suggest calling your GI again and again until they take you seriously. Lots of patients just get brushed off. Sometimes you gotta get pushy, or cry hysterically unfortunately.

Keep us posted and again welcome.
Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 75mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel (endometriosis), Tylenol 3 (Osteoarthritis), Zantac 150mg 2/day (acid reflux), Klonopin 1mg (Panic Disorder), Imitrex 25mg (migraines), Zofran 8mg (nausea)
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 19 years and counting.
07-24-2012, 05:52 AM   #3
Angrybird's Avatar
Join Date: Nov 2011
Location: Cambridge, United Kingdom

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Hello and welcome to the forum, I am sorry to hear that you are struggling so much right now I can only agree that you need to get onto your GI and kick up a fuss until they start sorting some tests to look into what is going on inside, otherwise get back to a&e (and from the way you are decribing the pain you may need to go now anyway) and do not let them fob you off. Demand the care you deserve and yes perhaps point out that you are at the point that you are using a homemade bed pan.

Pls keep us updated on how yu get on.


DX: Crohns July 2002
Surgery: Ileocecal Resection Sept 2011
Now:Tummy behaving itself and new mummy to baby Nicholas
Current Meds: 6-MP 75mg,B12 injections every 3 months
Previous Meds: Budesonide, Prednisone, Remicade, Pentesa,Hydroxychlorequine,Azathioprine (tried twice) and Methotrexate
07-24-2012, 05:10 PM   #4
David's Avatar
Join Date: Feb 2006
Location: Naples, Florida
Greetings and welcome

Wow, you've been through so much, you poor thing

I agree with the above, if you're having THAT MUCH pain, I'd suggest heading to the ER.

Please update us with how you're doing!

It's good to be back

Crohn's Disease Forum » Your Story » Just Hoping For A Few Friendly Faces To Share With And Get Guidance From
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