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Crohn's Disease Forum » Your Story » Newly "diagnosed" and scared.


01-20-2014, 03:28 PM   #1
Jacob's Ladder
 
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Newly "diagnosed" and scared.

I am a male, 29 years old and I am in good health. I started to work in a call center when I was 21. I used to be physically active when I was younger, I played hockey and football, and I was in decent shape. When I started to work in the call center I became a lot lazier and over the years I gained weight, to the point that I weighed over 300 pounds, I'm 6 feet tall (I know weigh 210 due to diet and exercise). I was eating horribly, my daily meals consisted of 2 sometimes 3 meals at fast food restaurants like McDonald's for example. I also smoked a lot of marijuana, I started when I was around 14 or 15, and up until last year I was smoking on average 2 grams a day.

So in October of 2012 I quit my job at the call center due to the stress associated with the job. I decided to start living a healthier lifestyle, I cut down on junk food and started eating healthier, I also started doing some exercise and was loosing weight quite fast. in February of 2013 quit smoking weed cold turkey due to it negatively affecting my lungs.

I was feeling good until sometime in the summer of 2013 when I started to have a pain in my lower right abdomen, it was accompanied by low fever that would last for days at a time. I didn't go to see a doctor right away because I figured it would pass. It did pass for a few weeks but then came back a bit worse, it did this a few times off and on until in October of 2013 I was plagued with that same pain in the abdomen but it became so sharp and intense that I could barely move. I did a bit of research and though I had appendicitis due to having all the symptoms associated with it. My pain was so bad that I had to call an ambulance because I was in to much pain to drive, and my family members were away on vacation.

When I got to the hospital they did some checks on me and determined that I didn't have appendicitis, but that the end of my small intestine was badly swollen. I still had regular bowel movements, that were never diarrhea, but I had difficulty passing gas and would become incredibly bloated. They kept me in the hospital for 6 days, they gave me prednisone and antibiotics, this caused the swelling to go down and the pain to go away. They did a few tests including x-ray, MRI and a colonoscopy. When the Gastroenterologist did the colonoscopy he was unable to enter into the swollen area, but was apparently able to take a biopsy. When he later talked to me he said that while the test was inconclusive he strongly believed that I had Crohn's (due to my symptoms being very similar to Crohn's).

He then let me let me leave the hospital and prescribed prednisone for 3 weeks and told me to go see him after my prescription was done. A month later I went to see him and was feeling fine, like I was 100% healthy. He asked my if I wanted to go on a different medication or try to stop the medication and see what happens, and that I should contact him again if it came back. I decided to try and stop the medication since I was still not 100% sure that it was Crohn's (due to colonoscopy being inconclusive) and I was actually scared of the side effects that the medications can cause.

So I went about my regular life until December 31st when I went to a new year's party at a friend's house, I drank a few beers (like 12 lol) and I went to Burger King and ate like 3 burgers. I woke up the next morning with pain in the same area as when I had been hospitalized in October. I went to the bathroom and it decreased a bit but didn't go away, I didn't panic and figured it would go away. Well after waiting 2 weeks for it to go away I finally tried to contact the doctor, but was told that he moved away. I then went to see my family doctor who told me she couldn't prescribe me the medication I needed and to go to the hospital for some "tests". When I got there Thursday of last week, they decided to keep me overnight so I could see another Gastroenterologist the next morning. Well when I saw him, he talked to me for about 30 seconds then left me with his intern. I am still at the hospital right now and was able to speak to another Gastroenterologist today. She told me that she is sure I have Crohn's even though they have done no further tests since last time I was here, and when I asked about alternatives to the side effect ridden drugs she just ignored me and had a "how dare you question me" attitude.

I've read that some people have had great success with fecal transplants, when I asked her about it she said that it's not for Crohn's, when I told her that I had read differently online she just shook her head and kept saying "no" repeatedly. I got the impression that she doesn't know what she's doing and just wants to push some pills on me.

I'm also thinking maybe I do have Crohn's and have had it for awhile but the Marijuana was having a role in suppressing it, as I've read that cannabis can be used as an alternative treatment. Anyway, what I want to know now is if I actually have Crohn's and what other tests could be done to ensure a 100% diagnosis. If I do have it then what are the best medications with the mildest side effects, what's the point in taking medications if the side effects are worse than what you're treating. And are there alternative methods of treatment that I could try than have little to no side effects. I live in New-Brunswick Canada, does anyone know of some good doctors that are not mere pill pushers? I am honestly scared right now and any help would be greatly appreciated.
01-21-2014, 08:14 PM   #2
Jacob's Ladder
 
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Seriously? Over 24 hours and not one response...
01-22-2014, 07:51 AM   #3
SupportiveMom
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Hey Jacob, what an ordeal. Sorry you are going through this. If you want to be sure it is Crohns or some form of IBD you need the colonoscopy tests and pathology to be sure. So far there is no other way to know you have it except that to know for sure.

There is no 'best medicine' as each person is different. If it is mild to moderate try to stick to things like methotrexate and 6-MP and others. Only go to the anti-TNF (like Remicade and Humira) if you don't get results.

Some, like my daughter, get little relief from any medication so before you get to those drugs and their risks you want to make sure taking it is worth the risk. Good luck and keep us posted.

__________________
Mom of 16 yr. girl w/Indeter.Colitis Sep. 2012(age 11) Nov.2012 Crohn's Sep. 2014 Crohn's Colitis, UC Nov 2015, Crohn's Feb. 2016

Ileostomy surgery July 2015

Current Meds: None!
Previous Meds: Humira, Remicade, Methotrexate, Cipro, Flagyl, Zofran, Cortifoam, 5-ASA suppository, Questran, Mezavant, EEN (Peptamen Jr. 1.5) by NG tube, Antibiotic Cocktail (Vancomycin, Metronidazole & Doxycycline), Simponi, Prevacid, Imuran, prednisone
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01-22-2014, 11:39 AM   #4
araceli
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Hi Jacob. Welcome to the forum. I will suggest, you find a Doctor you feel comfortable with. Test that will help getting a DX are colo/endo with biopsies, Sed rate, fecal calprotectin and others. The first thing Doctor would want to do is lower inflammation, some of the meds have nasty side effects and they take a while to work. Not all meds work for everybody, so you need to experiment with them and see what works for you. I guess the first thing to do is have a food diary and see what triggers symptoms. This is just my opinion. I hope you feel better soon.
__________________
Mom/ Girl 19
dx 2011 crohn's in terminal ileum, peri-anal
Prior Meds Asacol, Prednisone, nexium
Current meds.
Remicade since Nov. 2012
Supplements
5000 Vit. D, Multi-Vitamins with Iron
Currently in REMISSION :dance

Mom/ 16 boy
Amplified musculoskeletal pain
Prior. Prednisone, sulfasadine,
Currently. Celebrex, gabapentin, amitriptyline.
01-22-2014, 05:28 PM   #5
Jacob's Ladder
 
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Hey Jacob, what an ordeal. Sorry you are going through this. If you want to be sure it is Crohns or some form of IBD you need the colonoscopy tests and pathology to be sure. So far there is no other way to know you have it except that to know for sure.

There is no 'best medicine' as each person is different. If it is mild to moderate try to stick to things like methotrexate and 6-MP and others. Only go to the anti-TNF (like Remicade and Humira) if you don't get results.

Some, like my daughter, get little relief from any medication so before you get to those drugs and their risks you want to make sure taking it is worth the risk. Good luck and keep us posted.
Thanks for the reply! I was under the impression that the side effect for methotrexate and 6-mp were worse than anti-TNF. They ended up giving Humira without trying other drugs first, was that a bad idead?
01-22-2014, 06:41 PM   #6
Donjh
 
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Hi Jacob sorry to hear all you are going thru. If you are uncomfortable with your Doctor which is what it sounds like, you need to find one you will be comfortable with asp. Contact the patient advocate there at the hospital and demand to talk to them right away and explain your concerns. Be pro active until get the answers you need. 45 years I've been dealing with my crohn's. I'm now on humira and MP6. I hope things get better for you soon.
01-22-2014, 08:19 PM   #7
SupportiveMom
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Donjh said it well. Make sure you understand why Humira versus whatever else you can take. I'm not saying don't first go to anti-TNF, because that may be the best option for your case, just make sure there is a reason you are doing it.

One BIG frustration I have with this disease is there isnt a standard course of action like some other diseases. It makes it hard to know if you are on the right path or not. As you read thru the forum you see what works for some and what doesnt, but each case can be very unique so its important to get all the right testing.

01-22-2014, 09:15 PM   #8
Jacob's Ladder
 
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Donjh said it well. Make sure you understand why Humira versus whatever else you can take. I'm not saying don't first go to anti-TNF, because that may be the best option for your case, just make sure there is a reason you are doing it.

One BIG frustration I have with this disease is there isnt a standard course of action like some other diseases. It makes it hard to know if you are on the right path or not. As you read thru the forum you see what works for some and what doesnt, but each case can be very unique so its important to get all the right testing.
Well to get the right testing I will definitely need to deal with a different doctor and hospital. They were quick to suggest surgery even though I am newly diagnosed and have not tried any drugs except prednisone which works quite well in reducing the inflammation. I just get the feeling that the doctor is not doing everything she can for me, and has already made up her mind as to what the problem is and what the course of action "needs" to be, even though there has been a serious lack of testing done on me. When I asked her what foods I should try to avoid or eat more of, and she basically told me diet has NOTHING to do with any of it and that I should not shy away from any type of food! When I tried to tell her that I have seen numerous people claiming that a change in their diet helped them she was quick to shun my position that some research on the internet into healthier living may be beneficial. She basically told me to ignore anything I read online and that I need to trust only doctors and no one else! The first time I went to the hospital the doctor was very open to healthier foods etc, but unfortunately he is gone to Alberta and I can't see him anymore. I will need to look into another good Gastroenterologist in Moncton New-Brunswick,
01-22-2014, 09:25 PM   #9
Jacob's Ladder
 
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Donjh said it well. Make sure you understand why Humira versus whatever else you can take. I'm not saying don't first go to anti-TNF, because that may be the best option for your case, just make sure there is a reason you are doing it.

One BIG frustration I have with this disease is there isnt a standard course of action like some other diseases. It makes it hard to know if you are on the right path or not. As you read thru the forum you see what works for some and what doesnt, but each case can be very unique so its important to get all the right testing.

I guess I was just wondering why they usually start with other drugs before anti-TNF? Is it because anti-TNF's are more expensive, or because the side effects are worse or occur more often?
01-22-2014, 10:31 PM   #10
Jenna Ga
 
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Hi Jacob,
I think you mentioned that your colonoscopy was inconclusive, but there are other tests that can attribute to a Crohn's diagnosis. Once you find a doctor you are comfortable with, ask about an upper endoscopy to look for signs of Crohn's. When I was diagnosed, they found granulomas in my stomach lining during my endoscopy, which are often indicators of CD. Also, inquire about a barium swallow test, gross, but does yield some telling results. Best of luck!

Jenna
dx April 2013, Crohn's Disease
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