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Freshly Diagnosed

Short illness story: Back in October I nearly crapped myself to death. 3 weeks in I saw a gastroenterologist, and they were baffled. 4 weeks in, I went to the ER, they pumped me full of all kinds of antibiotics and 3L of IV fluid. Went home, and I gradually recovered. Nobody could figure out what was wrong. Fast forward to 2 months ago. Started seeing another gastroenterologist, and had my first colonoscopy April 29. Diagnosis: Crohn's. I'm 40.

I'm otherwise disgustingly healthy. I'm a power lifter. Earned gold medals in last years national championships in May. Our team qualified for the world championship meet. Had I put off seeing doctors for two months, I'd be winning more medals at the national meet this coming Saturday.

I'm pissed as hell, right now. New dietary changes have made me lose weight, and I can't eat enough to have the extra calories I need to spend time at the gym. I've lost 7 pounds in 2 months because of dietary changes, alone.

To top it all off, my doctors office is unresponsive, uninformative, and inattentive. They prescribed Apriso without telling me that it's a lifetime drug. No discussion. Nothing. Cherry on THAT cupcake is that the prescription wasn't called in on the friday of my colonoscopy as expected. I had to harass the office the following Monday and Tuesday to get it. Didn't find out it was a lifetime drug until a few days later, this last Friday, when I saw the nurse and asked how long I'd be on it. This is the best gastroenterologist I can get in my town. This doesn't seem right.

By the way, the Apriso didn't work. Maybe because it didn't work, maybe because my system has always been somewhat sensitive to chemicals. Maybe because my system had been so very recently chemically and physically brutalized. Not to mention the emotional and physical stress of colonoscopy prep, quitting smoking, quitting beer, diet changes, and dealing with the diagnosis. ALL at the same time.

Still haven't started the prednisone, because I can't get the office to call me back to answer questions. Both of my parents had bad side effects with it, namely their minds just checked out. I need to know what to do if/when that happens. No mind + extreme emotional instability could = me burning my house down in a fit of rage. Not comfortable with that.

Started the process of changing doctors today. To the one in Tucson that I saw back in October that's 80 miles away. Because they answer the phone, and call back. And their waiting room was unusually lively for a doctor's office.

I'm going to dig in and demand that we explore alternative treatments before I submit to pharmaceuticals.
 
Welcome. I am sorry that you had such a rough time getting responses from your first doctor. Hopefully, this by their one can get you in remission. Let us know how it goes.
 

Scipio

Well-known member
Location
San Diego
Welcome! As all of us here know, the diagnosis of an incurable lifetime disease is not good news. Very upsetting and stressful. For most of us life After Crohn's becomes rather different in many ways from life Before Crohn's.

I'm not surprised that the Apriso didn't work. It's a form of mesalamine - one of the mildest and weakest IBD drugs and one that in the first place is recommended for ulcerative colitis and not for Crohn's.

You are at the beginning of your battle with Crohn's, and getting the upper hand with this disease is usually a two stage process 1. Induction and 2. Maintenance.

The quickest and most powerful drugs are usually used for a limited time for the Induction phase. And once things have settled down and your disease is under control then you are switched to somewhat milder drug that your body can tolerate for long periods for Maintenance.

Prednisone is a very common induction drug. It usually works very well to quickly get the disease under control and relieve the symptoms. But as you know, it comes with a bunch of its own side effects. It's a short term fix only. Your doc will eventually need to transition you off prednisone or other corticosteroids and move you onto a maintenance drug such as an immuno-suppressant or biologic (or both). You can find a wealth of knowledge about these and other drugs, as well and non-traditional treatments, here on this site.

One thing you should know about the weight loss you've suffered is that it might not be due entirely to changes in your diet. Depending on its extent and severity, the disease itself often interferes with your body's ability to absorb nutrients even when you are eating full, regular diet. In youngsters Crohn's can literally stunt their growth due to this inability to absorb much nutrition.

I hope the non-pharmaceutical approach you wish to try first works out for you. But be aware that there isn't a lot of strong evidence in favor of most of those approaches. I'm always hopeful for something better to come along. I hope with all my heart. But in the meantime my own preference is to rely on scientifically proven treatments, which unfortunately usually means drugs.

Good luck and welcome again.
 
Diet changes are 95% the reason for the weight loss. The remaining 5% might be my lifting program changes. I switched from power to figure when I started seeing the doctor. I was 140, and gaining, before I started seeing the doctor in March. Lactose free diet knocked me down to 136 which held steady for 3 weeks, and strict low residue diet for a week and a half has me down to 133.

Trying to figure out how to get 1600 quality calories out of this low residue diet is maddening. Best I've done, yet, is 1200. Need to hit that 1600 to get back to the gym.
 
I'll probably calm down and be able to listen to reason as soon as I get a new doctor. One who will actually tell me what's going on.
 
See the new Doc on 1 June. Day before Comicon. That's going to be a busy weekend :)

Also dug out the body analysis I had done in early March, and had a good think about how I was eating before this all went down. I am most definitely starving on this diet. And my brain feels like it's starving. I have never denied it fat and protein like this. I used to throw down upwards of 2000 calories a day. I need 1360 to maintain 139 pounds (my weight when I got the analysis).
 
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I'm curious why you have cut out fat and protein? Do these increase your Crohn's symptoms? I am on a low residue diet(just had an ileostomy reversal surgery last Friday) and I am eating primarily meats and fat.
 
I didn't cut it out, per se. Just following the dietary instructions I was given, post colonoscopy, which are significantly lower in fat and protein than I'm accustomed to consuming. One day of this diet provides the fat and protein I'm used to eating in one meal.

But, since I can't get a call back from my doctor, I'm just doing as I was told and quietly starving to death. Which pisses me the hell off because I was robustly healthy, gaining weight, and looking to break all of my powerlifting records from last years meet before I started seeing these people.
 
Keep bugging the doctors. I've heard of doctors restricting fat (if the patient shows signs of maldigestion of fats) or fiber(if the patient has narrowing/strictures), but I haven't heard of restricting protein. I might look for a new GI doc, especially since this one is prescribing Apriso for Crohn's which suggest he/she isn't following up on the latest research into Crohn's and might not know what they are doing.
 
New doc is already on the menu. No strictures that I know of. Just a bit of inflammation in the colon. I was robust and unusually zesty about life before all this doctor stuff started. And I ate like a pig.

Sorely tempted to cancel next weeks appointment and just let things ride, eat how I feel (within some limits. I really will try to mostly follow this low residue thing), and see what happens 1 June with the new doc.
 
Just cooked up a beautiful protein bomb of a soup, and added a generous splash of olive oil for fat. My everything is already perking up.
 
New doc is already on the menu. No strictures that I know of. Just a bit of inflammation in the colon. I was robust and unusually zesty about life before all this doctor stuff started. And I ate like a pig.

Sorely tempted to cancel next weeks appointment and just let things ride, eat how I feel (within some limits. I really will try to mostly follow this low residue thing), and see what happens 1 June with the new doc.
I like your fresh attitude !
Whatever, just make sure to be monitored and do your best to keep the inflmmation in-check. You definitely dont want to close your eyes now and wake up one morning in 7 years with a stricture or some other complication built fromscar tissue.

Feel well, dear.
 
I feel fantastic, which is why I'm being so combative about the whole thing. I'm 40, and completely intact if a little inconvenienced, which is late for Crohn's. I did my homework, and it all points to my first and only major flare up last October.

I think I have time to sort this out and carefully explore the path ahead. Meds or no meds. I need time and information. And I will fight like a cornered wild cat (which is what I feel like, right now), until I can get enough answers to make me comfortable with whatever the outcome is.

from where I'm standing, now, it seems that there's very little attention paid to the psychological and emotional impact that this has. It's just drugs and diet. Doc doesn't seem to care that she's pulled 40 years of habit and life and outlook out from under me. They're going to have to fight tooth and nail to get me to give up one more thread.
 
Finally got access to my digital files. Seems they want to try another Ulcerative Colitis drug on me.

"Discontinue Apriso.
Will start Prednisone 40 mg PO daily.
Will try Asacol once the diarrhea is managed on the Prednisone, if not able to tolerate or symptoms progress, will then start Azathioprines if TPMT normal.
Will send for IBD-7 serology and TPMT enzyme testing."

20 minutes later, friend who shares this doc messages me on facebook to say something about nurse not mentioning something potentially important.

Called that office up and fired those bitches on the spot. Said that I didn't feel safe under their "care" when I cancelled the appintment *


*Not to worry. Those bitches never bothered to call be back to answer my questions, so I never started the prednisone.
 

Lady Organic

Moderator
Staff member
Hi Magpie. I encourage you to start the prednisone prescribed asap. You dont want to risk further damage or disease going out of control. crohn's can be unpredictable and you want to control it as soon and as well as possible. Crohn,s is a life long disease and hospital staff do become part of our lives. I hope you will get along with them. Wishing you well :)
 
Hi Magpie. I encourage you to start the prednisone prescribed asap. You dont want to risk further damage or disease going out of control. crohn's can be unpredictable and you want to control it as soon and as well as possible. Crohn,s is a life long disease and hospital staff do become part of our lives. I hope you will get along with them. Wishing you well :)
I agree
 
Hi MagPie, if you are unhappy with that GI doctor and his nurses i would say find another practice. Sometimes you have to go to several doctors to find one that is competent and a right fit for you. Crohn's is an insidious disease; one minute you feel fine the next you are hit with a ton of bricks. You'll have to be your own health advocate and make sure you manage this disease so it doesn't cause devastating damage.
 
I encourage you to start the prednisone prescribed asap.
Except that I won't be able to get any support from this office when something goes wrong. Both my parents reacted badly to prednisone, so I'm not getting on that ride until I know I can get help when I need it. Seeing a new doc on 1 June.
 
Hi Magpie, glad you were able to get a new doc appointment so quick! Keep us updated, hopefully this one can be helpful and get you feeling better soon!
 
Appointment went well. He doesn't think I'm that bad off, so he's ok with me not taking any of the medications, for now. So long as I feel well and figure out the diet that makes me poop right, they don't want to hear from me again until things go south :)

Since all medications appear to eventually lose their juice, it's best to put them off as long as possible I think.
 
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