Newly diagnosed, scared and depressed.

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jmhill78
New Member


Date Joined Oct 2009
Total Posts : 3
   Posted 10/8/2009 7:25 AM (GMT -7)   
I am a 31 year old male who was recently diagnosed with either Crohns or UC. I started having sypmtoms about 3 months ago. I went to the doctor 2 months ago and I was scheduled to have a colonoscopy. I had the scope 2 weeks ago. The results of the biopsy were inconclusive so at my followup appointment, the doctor took blood for the Prometheus Serolgy 7 test. My doctor informed me that I did have inflamation in the colon and there were ulcers present. He also said he noted some slight inflamation in the small intestine. I have been on Asacol(2 pills 3X day) as well as an enema of mesalmine nightly(prescription of 4 weeks total) since the colonoscopy. 
 
My symptoms included diaherra, blood on tp and stool, and mucous. I never had any abdominal pain and still don't. Since going on the Asacol, the bleeding and mucous have stopped and I'm going to the bathroom much less now, though the stools are still not well formed.
 
I got severely depressed this morning after researching the diseases,all the medications and side effects, the surguries and about how that could relate to my future. I am not comforted by the fact that these diseases do not have a cure.

Former58D
Regular Member


Date Joined May 2009
Total Posts : 173
   Posted 10/8/2009 7:49 AM (GMT -7)   
I think you're going through the normal stages of post-diagnosis. Like most of us, you will probably become a student of your own disease. Knowledge is power! There are many drugs that may induce remission for long periods of time, decades for the lucky ones. I too have struggled with the emotional aspect of Crohn's, which I believe to be equally as devastating as the physical component. It has been two years since my diagnosis. I've never truly been in remission, but we're still working on it. I am active duty military and wonder about my future as well, especially the ramifications if I should be disqualified from service.

Bottomline, I take each day is it comes, celebrate the small victories, and wonder at my new found appreciation for life and health in general.

JB
"What can't be changed must be endured" - unknown

DX with distal Crohn's colitis Oct 2007, predominantly in rectum
Colozal (750mg): 3 pills 3xdaily
Cortifoam - 1 nightly
6MP - currently at 100mg and waiting for response......


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 10/8/2009 8:40 AM (GMT -7)   
Hi jmhill78 and welcome to Healingwell. Sorry for the reason you have to be here though. First off know that having IBD (Inflammatory Bowel Diseases) is not a death sentence, there is life with this disease. It will be a disease that is active at times and other times you will enjoy a remission. I have lived with this disease for 34 years. I can tell you honestly that I have had more good days than bad. When first diagnosed it is usually the hardest time for most. It takes awhile to get diagnosed and find the right treatment, but once you do things will improve greatly for you.

A few things you need to know to help. One is you need to find the right diet for YOU. Diet is very individual for us. Most of us tend to be lactose intolerant, and have to avoid things like popcorn, nuts and seeds. I personally live on a low residue diet all the time. Easy to chew, easy to digest. You can google it and get diet ideas. Others find success with the SCD/Makers Diet. Also, your life will now be one with medications all the time. It is important to stay on the maintainence meds to keep the disease under control. Without meds you are risking the chance of having more serious complications such as obstructions and surgery and when it flares it is more difficult to get back under control. So always remember to take your medications.

Also, many of us Crohnies tend to have bacterial imbalances in our intestinal tracts. Probiotics are something I personally believe we should all take. I personally take Primadolphilus Reuteri by Natures Way. You can find it in the refrigerated section of your local health food store. Others use Culterelle, Align or VSL#3 with success. We are also very commonly low on Vitamin D. You might want to ask to have yours tested and supplement as needed.

I know it seems very overwhelming right now, but better days will be ahead. You will just have to learn all you can about it, and make the necessary adjustments. Ask any questions you might have, we have alot of wonderful and supportive folks who will be glad to help in any way they can. Also check out the Crohns and Colitis Foundation at ccfa.org.

Hugs
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

pimfram
Veteran Member


Date Joined May 2009
Total Posts : 506
   Posted 10/8/2009 9:26 AM (GMT -7)   
It is always tough at first. I spent a while wondering why me, crying myself to sleep, etc. The toughest part for me was determining what foods are bad and what is good. I spent the first year fighting my own stupidity, not listening to my body and spent too many nights in the hospital.

There are many days when I don't feel very well, but those are vastly outnumbered by the days I feel fine.
Diagnosed with CD July 2007
Currently on Remicade, Imuran, probiotics, folic acid, multivitamin.

Amor fati - Nietzsche


bella_sky
Regular Member


Date Joined Aug 2009
Total Posts : 90
   Posted 10/8/2009 10:52 AM (GMT -7)   
Welcome to the community, I was also just recently diagnosed and found this to be a wonderful place to get information and not feel alone with everything happening. Its also helped me to accept the lifestyle changes that must be made in order to get healthy and stay healthy with Crohns. Attitude is everything, dont let this defeat you but realize there are sacrifices that must be made that depends entirely on you. Time with trial and error involving foods and treatment. Best of luck to you - J
dx w/CD finally in July 2009, currently taking pentasa, entocort, cipro, flagyl, probiotics, celexa, bentyl, biofeedback.
 
"It is not the strongest of the species that survives, nor the most intelligent that survives. It is the one that is the most adaptable to change" Charles Darwin


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 10/8/2009 11:24 AM (GMT -7)   
I have quite literally lived my whole life with Crohn's disease. My Mother was diagnosed when I was 1 and I was diagnosed when I was 23 (I had shown signs at 13). It can be scary, as any unknown is, but as Nanners said, the good days far out number the bad. I am almost 45 now. I have been married for close to 25 years, I have 2 wonderful daughters, I have worked part-time while raising them and was actively involved in every aspect of their childhood, from field trips to coaching. I have not let CD stop me from doing anything I wanted. I may have had to make some accommodations for it, but I will not let it stop me.

You are doing the best thing you can do which is educating yourself, however, you can't let that education scare you. You need to understand that while all the things you read about MIGHT happen, MOST things wont. A lot of the posters on this site are here because they are extreme cases and are looking for help, or they are newly diagnosed like you and looking for answers. Some of us have had the disease long term and hang around to try to answer questions and help out because we have been there, done that. The majority of the CD patients are out in the world living their life not giving it a second thought. They take their medicine, maybe have a minor flare here or there, but basically, life goes on for them with no more than a blip. Once you find the right diet and medication (or medication combo) there is no reason to believe that your life will be any different than theirs. They are the majority of patients. The ones who can't find the right combo, or can't find the right diet, the extremes, they are the minority. There is no reason, at this point, to believe that you will be one of them.

I would recommend that you read a book called "The First Year, Crohn's Disease and Ulcerative Colitis", by Jill Sklar. She is/was the moderator on another Crohn's forum. She has Crohn's herself, and her FIL is a GI. The book goes through all the things that we go through during the first year after diagnosis, lots of info. I read it probably 15 years after my diagnosis and still found it helpful. There are lots of books out there, you can find many by clicking on the resource directory above.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


jmhill78
New Member


Date Joined Oct 2009
Total Posts : 3
   Posted 10/8/2009 11:30 AM (GMT -7)   
Thanks for all the responses, they make me feel somewhat better, especially Zanne's. I do notice Zanne that in your signature, you have had 3 resections. Are you considered an extreme case or would you say that is relatively normal for someone with CD?
 
I will check out that book.
 
Justin

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 10/8/2009 11:39 AM (GMT -7)   
Justin,

I myself have mild Crohns, but have had 2 resections myself. Why did I have the resections? Because I didn't want to take a maintainence med. I felt fine, didn't think I needed it. Well while I was busy getting on with my life, Crohns was still in there doing damage on a microscopic level and because of that I obstructed completely. The first was an emergency and the second by choice because my quality of life had gotten so bad.

Now I always take a maintainence med because it took me about 7 years to get back to where I am today. And that 7 years was pretty miserable. As I stated before, if you don't take your medications the disease continues on doing damage. I believe Zanne's experience were pretty similar to mine. Hope that helps.

Hugs
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 10/8/2009 1:06 PM (GMT -7)   
Yes, as Nanners said I was untreated and undiagnosed. Even though my Mom had CD, when I showed signs I was basically dismissed as being lactose intolerant so I went undiagnosed for 10 years. I believe that the damage done during those years was responsible for the 3 resections in such a short time. Because doctors try to leave as much bowel as possible, sometimes microscopic disease can be left behind. 2 of my resections were because my disease just wasn't responding to treatment and one was due to a build up of scar tissue from past damage. Since the last resection, I have been successfully maintained on 6MP, one of the more mild drugs, along with various doses of prednisone. I have occasional blockages due to adhesions but my actual CD is pretty much calm with just some mild ulceration at the site of the anastamosis.

Please feel free to post any and all questions here. Due to the nature of CD, we have pretty much heard them all, so not much is off limits. It really is a case of the more you know the less scary it all is, but most things you really won't have to worry about.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4100
   Posted 10/8/2009 2:15 PM (GMT -7)   
Hi Justin,
I have had my Crohn's diagnosis for about three years. I have periods of remission when I feel great, and other times when I have flares. I used to cry every time I got sick, but now I am getting better at knowing what combo of meds and food help me, but also, I am beginning to trust that I won't stay miserable, so I have more hope and don't get as depressed as I used to. It seems kind oversimplified to say "have a positive attitude," but I do find that as long as I can keep my hope up, I cope much better. This site always helps me too. I don't have any friends or family members with Crohn's and it takes the edge off the lonliness when I can come online and vent.. Welcome to the forum, and keep writing.
50 yr. old female, diagnosed with Crohn's in small intestine and terminal ileum Sept-Oct. 2007. Also have IBS, and had Salmonella Dec. '07
currently taking Pentasa- 4 500mg pills per day, Metamucil and colace for constipation, probiotics


Harley Rider
New Member


Date Joined Oct 2009
Total Posts : 9
   Posted 10/8/2009 3:34 PM (GMT -7)   
Hi Justin. I have had Crohns since I was 27. I have never had any resections, but and I mean a big BUT, I made the mistake of not following dr's orders in the first year and didn't take my meds like I should have. I ended up in the hospital weighing in @ 118 lbs from about 160. I couldn't even swallow a drink of water without it coming back up. Total blockage complicated with gangrene in my stomach and intestines. I had to have my stomach pumped for 7 days with heavy doses of prednisone to battle the infection. Luckily I had a Dr that was open to medical treatment over surgery. Mainly because even if he did a resection it might not help the gangrene. Bottom line... Make sure you follow Drs orders and TAKE YOUR MEDS.
I am luck to be alive after that episode and now I never let it get me down too far.
Good luck with everything.


Diagnosed with Crohns in 1986. Have never had to have surgery yet.
Have the support of my lovely wife of 30 years who makes sure I stay on the right path.

Post Edited (Harley Rider) : 10/8/2009 4:37:12 PM (GMT-6)

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