• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Hello i'm new.. Just posting some info about me

Steven

Steven

I'll start with a basic instruduction.. I.m a 32 yr old white male avg build typical guy..For about a month know.. I've been experiecing some brutal pain from lwr rt abdomen... Went to the doctor.Who sent me for ct scan.. Which showed major inflamation of the ilieum...This has my doc concerned I may have crohns.. I have apt @ the end of the month with a specialist..Before this last doc visit i'd really ever go to docs.. Thinking back know about all the symptoms I've been ignoring for the last 10 years.. Its all starting to make sense.. I beleive i'll probably be dx w/ crohns.. I have one aunt who has it already in my family.. I'm still in the early stages of trying to get everything figured out here.. Tring to stay postive.. But its definetly taking a toll on me emotionally.. Thanks for taking the time to read my story
 
C

Crohn's 35

Inactive Account
HI Steven :welcome: I know you are feeling anxious and I have been there but many years ago. It is hard to be positive but you have the classic area where crohn's is located on most of us. It runs in our family, big time. You will learn what to eat, most stay on the Low Residue diet and avoid dairy. When we flare bad we go on fluids. Most guys avoid going to the doctor, not a pleasant disease to discuss, like bowel movements your butt and personal areas.

When you do see the specialist he will put you on a mild drug, probably Pentasa, and or Entocort. You seem to be in the mild to moderate stage.
Hope you get answers right away , andif you don't, that is not uncommon either. Keep us posted ok? We are here when you need us. Glad you are here!
 
Steven

Steven

Thanks Pen.. Yeah I forgot to mention they already have me on flagyl for two days know.. Which I think is helping.but not sure..because I really haven't been eating as much as normal.. Because i'm nervous it might do bad things.. I will coutinue to educate myself on this disease and learn from others.. But from what I have read already.. Everyone has different tak es which isconfusing..it seems this disease is still a big mystery.. It also seems everyone is effected differently...
 
C

Crohn's 35

Inactive Account
I too am on Flagyl but low doses. It will help kill the bacteria and inflammation. Short term it is safe. BTW do NOT drink on Flagyl or even cough syrup with alcohol in it , or you will be praying to the porcelain God... It is a confusing disease and diagnosis as well. Stress is best to be avoided too. Trial and error seems to be what everyone has to do, what works for me may not for you. We just help and support you whenever we can!
 
B

blessedwithfour

hi there. i too am just newly diagnosed and trying to figure out what im doing. its really hard to believe isnt it? anyhow, im tapering off pred and seeing whats next. for 3 weeks ive been eating gluten free and i actually think i feel better. who knows! welcome!
 
Jessi

Jessi

Moderator
Welcome to the family, Steven. I hope you get answers quickly. Many people here have tried and waited for years to be diagnosed. Some are still waiting. Fingers crossed for you. love. :hug:

It's not uncommon for people to ignore their symptoms for so long like you did. But you've got to promise yourself not to ignore what your body is telling you anymore. Hang in there.
 
L

laurarey

Twelve years after diagnosis, I am joining this site. I went for years prior to the dx, which made life very stressful, as I knew that I was not well. Finally getting a diagnosis, embracing the diagnosis and taking the disease step by step, and day by day, is the way I have found to cope. I have learned to live different, embrace the small things. I go for whole health; sleep, diet, reduction of stress, allowing more time in my day, and laying low when I know that I need to- like today. Hang in there. I hate the quote, "That which doesn't kill you, makes you stronger"...hate it! However, I have learned to embrace my life and live in the moment better. My faith and my family have carried me through, and I have learned to minimize the chaos producers in my life... I hate to say it, but I am a better person because of it. Be kind to you....laura
 
Steven

Steven

Thanks all. I took yesterday and today off work to get some rest.. I had blood drawn yesterday for labtest.. I have very mixed emotions right know.. Being in a holding patern has been tough.. I wish I had an appetiate right now.. I feel so weak.. All I'm after is getiing back to doing the things I enjoy in life... Unfortunately I realize this might be a long battle..
 
Jessi

Jessi

Moderator
Yes, the battle may very well be a long one, but don't lose hope. There are many here that understand what you're going through, as they are going through the same kind of emotional roller coaster that you are. Please make yourself feel at home here. The Undiagnosed Club may be of great support for you. http://www.crohnsforum.com/forumdisplay.php?f=75 Take care of yourself and keep us posted.
 
Steven

Steven

Just thought i'd update my thread.. So atfer almost 4 months I'm still have the same symptoms..Not getting worse, but not improving.. I had what was believed to be an abcess draineed back in decemeber.. Had my first colonoscopy 2 weeks ago (oh my goodness that prep liquid is evil, I yacked towards the last few ounces, This is defintely the worst part about a colonscopy) .. They did byopsises at the same time.. I find out the results in 2 days.. when I see my GI.. I dodn't no why they are taking so long to get a dx.. It sucks sitting in limbo.. My Hasn't given me any meds besides the flagyl I took in november and some stuff called apriso he has me on currently (which doesn't do anything for my symptoms).. I have had such horrible nausea,fatigue,anxiety, insominia and ab pain.. So far my doc has told me to get exercise take vitamins and stay on a low res diet.. But this isn't helping at all.. I sure hope I can get some meds that actually help with my sypmtoms because it is really taking a toll on me.. Physiclly and emotionally...
 
L

laurarey

That seems like a long time of procedures and diagnisis...doesn't seem right. I would be a bit assertive. When I have been on the correct meds I feel better. Granted I live in constant pain, take many meds including humira, and Vicodin for pain, my GI is fantastic and gets back to me immediately. I have a more severe case and have had some inept docs. Where do you live.... Good medical care?! My doctor has been my saving grace during my last horrendous flare up that has lasted over a year!!! Let me know.Pulling for you!!! Laura
 
L

laurarey

Sorry. On my I phone. Did not see SAN. SAN n LA have some of th top docs I heard w IBD. I will see if I can get any names for you. I feel like you have not been treated in a timely manner!!!! Not right Steven :)
 
CLynn

CLynn

Location
Missouri
Hard as it can be at times, do try your best to stay positive, Steven. It does better, and I remember all to well being where you are, truly. And yes, you have gone too long undiagnosed, you need the diagnosis to get the right meds. It can definately be confusing, definately. Once you get the dx, and meds and get feeling better and stronger, you will try different things to see what works for you, as far as diet and supplements, etc. Keeping my fingers crossed, hugs!
 
Angrybird

Angrybird

Moderator
Location
Hertfordshire
Hi Steven, I do hope that the biospy results give the answers you need to get a working treatment sorted, although did they not say anything to you after the actual scope? Usually some info can be given straight away on how things look....

Wishing you well hun :hug:

xxx
 
CLynn

CLynn

Location
Missouri
Think my specialist waited a week or two after my scope/biopsy to tell me the results. Since he didn't tell me the reason for the biopsy, I was left to worry for that time as to whether or not he thought I had cancer. That was pretty scary in my 20's.
 
Steven

Steven

Thanks. For the support everyone.. The paper they sent me home with said there was inflamation in the lower right quadrant. It was definetly not normal.I don't remember everything told to me because of the aneshesia. Tomorow I have an apt with my gi who will give me my biopsy results.
 
CLynn

CLynn

Location
Missouri
Well, at least back then, the only way to know for sure it was Crohn's was with the biopsy....it just would have been nice if he had told me why he was doing the biopsy. And yes, the anesthesia effects me the same, they tell me something which makes perfect sense to me at the moment, and then two minutes later I am confused as to what they said, lol
 
Steven

Steven

It has been confirmed.. I have Crohns disease.. My doc has put me on Lialda.. He also gave me a probiotic called florastor, and vicodin and ambient as needed for pain and insomnia..
 
Steven

Steven

Update::

Been on Lialda for 2 months know.. No effect whatsoever.. Went to the Doc yesterday.. He sent me me for blood work.. I have one more hepatitis vaccine next month.. Then the doc is gonna put me on humira.. Until then he's starting me on Pentasa.. Overall I've been managing ok.. Good days and bad..
 
David

David

Co-Founder
Location
Naples, Florida
Thanks for the update! It's not surprising that the Lialda didn't work since you have ileal inflammation and it's formulated for colonic inflammation. Hopefully the Humira and Pentasa do the trick for you! :)
 
Steven

Steven

Thanks for the wishes .. I'm hopeful humira will work.. My aunt ia currently on it 4 crohns and she's doing well.. Only time will tell.
 
Steven

Steven

Finally got my humira today.. The loading doses aren't nearly as bad as everyone makes them out to be. I will keep this thread updated as my treatment goes on w/ the humira.I am currently in a mini flare. Hopefully I start feeling better.
 
Steven

Steven

Update:

I am 1 week into my Humira treatment.. I am happy to report I'm seeing postive results.. This is the first drug thats actually doing something..Not out of the woods yet But it looks like it's gettin me out of that flare.. I excited and hopeful this continue's in a postive path..
 
Mike88

Mike88

That is awesome news! Hope it continues to get better for you man. Are you doing the injections bi-weekly?
 
Steven

Steven

Yeah i'm the typical 4 dose/2 dose/ then 1 dose ever two weeks teatment.. I think this is what most start on..
 
Racheld

Racheld

I am newbie to, diagnosed in March this year, Currently I am on a 6 week trial of entocort, which they may be adding to later if things don't settle.
 
Steven

Steven

Racheld said:
I am newbie to, diagnosed in March this year, Currently I am on a 6 week trial of entocort, which they may be adding to later if things don't settle.
Click to expand...
I hope the Etocort works for you. Good luck to a path of good health..

Update:

Ok so I took 2 Pens on 7/5/12.. Now a week later and I can tell its wearing off :thumbdown: But then again bm's are down to 2x day and normal.. Just getting some discomfort/pain from my rt lwr adm again.. But not nearly as severe as pre-humira.. But then again I've loosened up my diet probably more than I should and eating more.. For awhile there I forgot I had Crohns's..
 
Angrybird

Angrybird

Moderator
Location
Hertfordshire
Glad that you have noticed some improvement hun, the discomfort could be from the change in what you are eating - I know in the past when I have started for feel better I then start to eat more and go for foods that whilst in flare up was a no no and then learnt that the tum still doesn't approve. Fingers crossed this will settle down when you have got the food side of things balanced out.

AB
xx
 
Steven

Steven

Ok so i'm about 6 weeks in on humira. Big improvement. But not full relieve. But some is better than none right. Went to my GI doc today and found out he's leaving the hospitol. So I need a new GI. Anyone know of a good GI in san diego
 
Steven

Steven

Update.. The stress of work is really taking a toll on me.. I have been doing so much better up until about 3 days ago.. I'm now in a mini flare.. I hope to dig my way out of it.. uuuhh..
 
You must log in or register to reply here.
Top