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New Member

Date Joined Feb 2009
Total Posts : 7
   Posted 2/18/2009 8:14 PM (GMT -6)   
Hi all,
I am in the process of being diagnosed with Crohn's...and am really frustrated. I had stomach pain for about 6 weeks and lost a lot of weight following a stomach flu before I could finally get a referral to a GI specialist (I'm a graduate student and have to go through the crappy student health center with my crappy insurance to get anywhere). Went to the GI, said it could be lots of things, sent me for an ultrasound to rule out gallbladder, then scheduled me for upper endoscopy and colonoscopy. Fun times. They found multiple ulcers and inflammation throughout - took biopsies and started me on Nexium. Abobut a week after, I felt great, almost like I had before everything began. When I went for my followup, the doc said he was ready to dx Crohn's, but since my symptoms had subsided so much, he wasn't sure. So, sent me for a blood test that was supposed to determine it. After 2 weeks of not hearing anything (he said he'd call me in a week), I finally stalked him, and he said it came back negative, no Crohn's! WOO! He said ulcers probably from NSAIDS and the inflammation from a nasty infection. I was obviously thrilled. Well, wouldn't you know, the pain started to come back. I had a follow-up upper endoscopy to check the ulcers on Monday, and also told him about the pain. Turns out some ulcers had healed, some had not, and there were some erosions and a polyp. Took biopsies again, and now we've gone from definitely not Crohn's to most likely Crohn's. I am SO frustrated. They started me on Pentasa and scheduled me for capsule endoscopy. I have ALWAYS been an incredibly healthy person, and am having a hard time accepting this. Just getting the Pentasa and seeing I have to take pills FOUR times a day was so hard. I have always been incredibly active - a competitive runner and cyclist, and had been training for my first, I haven't been able to run in over 3 months because of all of this. I wonder if I'll ever be able to resume that part of my life on the same level. I guess at this point I'm trying to accept the diagnosis because I am desperate for relief. It's the life-long chronic part of it that really scares and frustrates me...
I just needed to vent, and appreciate any words of wisdom on Pentasa, getting diagnosed, the capsule, being an athlete with Crohn's....or anything.... Just from looking through posts I can see what a supportive community this is and how helpful it can, thanks in advance.

Veteran Member

Date Joined May 2007
Total Posts : 1220
   Posted 2/18/2009 8:30 PM (GMT -6)   
Hello Bizbug!

Welcome to the Forum! You are right that this is a wonderful bunch of folks! I am sorry you are having to go through this. Please remember that many of the folks here are very sick and that may not be your path at all. It seems there are many, many people who have mild symptoms and probably go their whole life not knowing they have Crohn's. Others may have one problem and thats it. So please don't assume the worst.

I hope the drugs help you whatever you have. One thing I have learned is this all takes a lot of patience. Healing can sometimes be slow. So please give the meds time.

Take care.
Diagnosed with rectal Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.

Veteran Member

Date Joined Jan 2006
Total Posts : 768
   Posted 2/18/2009 8:38 PM (GMT -6)   
I feel your pain so vividly it isn't funny. All the changing back and forth is crazy. Sounds like they are giving you the right tests. I was sick for a few years before they decided what I really had. I have had 5 years of non stop flare. I ran my first ironman in Florida after I was diagnosed and before the first surgery. Surgery helped fissure problems but yes it's a long road. I kept trying to train sick and maybe I would say to you,take a break from hard training and keep fit until you can get things under control. I was training to win races and place so that is maybe more intense the the average triathlete. I really mourned my past life and had some hard adjustment at first. I got on herbs that to my amazement and surprise have helped the flaring quite a bit and am swimming 2k 3x a week and bike twice a week and walk 2-3 hours 3x a week. As long as I don't over exert heart and tax immune system, I seem to be Ok. Some days are good and others can be debilitating. Don't abuse your body, take care of it and it just might help you back.

Veteran Member

Date Joined Apr 2006
Total Posts : 1665
   Posted 2/18/2009 9:23 PM (GMT -6)   

so glad you found us. you will get lots of help. just know these first few months are the worst and there will be (as you have found) ups and downs as far as information. you asked about Pentasa, it is a maintanance drug that helps a lot of people, but often isn't enough to get inflammation down. Begin with eating low residue foods, and consider cutting out gluten (which has helped me so much I am back to normal) and know that you will most likely feel better when they get the meds figured out.

the capsule is super easy and rather interesting, and it makes you look like the unibomber for a day! it often gives very helpful information.

keep asking questions and take care, yp

49 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. December '06 had adhesions cut through a laparoscopy. Now taking Glycolax, Ultra Fiber Plus, Florastor, and DHEA. Have become gluten-free diet per naturopath's tests.

Texan with Crohn's
Regular Member

Date Joined Dec 2007
Total Posts : 362
   Posted 2/19/2009 6:06 AM (GMT -6)   
Welcome to healingwell, bizbug.

Hang in there. Everyone, myself more than I care to admit, gets frustrated, etc., with not being physically up to par due to illness. Just remember to take care of yourself. Watch what you eat. You should have been given a crohn's list of items NOT to eat, follow that. Also, take extra vitamins. Cronies don't absorb enough vitamins. I feel your pain about taking multiple pills every day, but I have come to accept this after a couple of years now. :)

We are here to support you and answer your questions. The search box is great as well, especially when doctors prescribe medications and you are wanting to know about them.

-Leslie a/k/a Texan with Crohn's

Veteran Member

Date Joined Mar 2007
Total Posts : 4527
   Posted 2/19/2009 7:02 AM (GMT -6)   
Hi Welcome and your right it is hard to adjust to a not so healthy person that we seem to become ,but it is alot worse not knowing and letting things get away from us. I found some comfort in that. By the time I was DX I had gotten pretty sick although I have had problems for years. Sometimes though we give up one interest in life to make way for another, sometimes it is putting health first and doing what we can do .Keep in touch and let us know how you are doing as our journey in life is much better lived with support and help from others that understand gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still gail

Veteran Member

Date Joined Jun 2005
Total Posts : 981
   Posted 2/19/2009 8:41 AM (GMT -6)   
Hi and welcome bizbug I too was always very active but for me that has come to an end, but thats not to say it will be the same for you, so please dont think the worst, I do agree with fallcolors on that one. Once you get on top of this there should be no reason why you cant continue to lead virtually the same life you are used to. I have had this disease now for 21 years and about the first 10 were pretty good considering, I mean it didnt stop me doing anything I enjoyed, for me its only been at its worst for about the last 5 years. Any questions dont hesitate to ask us we are only to happy to answer them honestly for you, but remember all the bad stories you read may never be you. Hang in there and I hope you get all the answers you need soon take care

Regular Member

Date Joined Feb 2009
Total Posts : 269
   Posted 2/19/2009 11:45 AM (GMT -6)   
Hi Bizbug
I am new to this forum too. I was diagnosed with crohns about 4 years ago, prior to that the doc thought i had irritable bowel.
I see that a lot of the people on this forum are very ill and that may really worry you. emenber everyone if different.
Before I was diagnosed (when I had my first major flare up) I jogged, did step aerobic classes and was pretty fit. I had long periods where I could excerise and now I just go to the gym 3 times a week as and when I feel up to it. I have had to accept over the last few years that with crohns your life is bound to change but my policy is to try and keep up beat and to look on the positive side. I have just changed my life to fit round the crohns and generally I have a pretty good life. I work full time, go to the gym, see my friends , eat out go on holiday etc. You can live a relatively normal life and have crohns it helps by having a good positive outlook.
I started off on steriods but had lots of side effects and then became dependant, I then went on azathiroprine which was great for my crohns but unfortunnately i became allergic to it and it affected my liver. I am now on imfliximab (remicide in the USA). It is an expensive drug £1300 per infusion but as I live in the UK I dont have to worry about this. It doesnt perform the miricle I had hoped but it certainly helps.
So good luck, distract yourself with family and friends and look for ways of fitting the life you want to live around the crohns. wink

Regular Member

Date Joined Feb 2009
Total Posts : 39
   Posted 2/19/2009 3:15 PM (GMT -6)   

Bizbug,  I just found this site and like it.  I agree with the earlier posts warning you not to assume the worst.  As my GI told me straight off -- you might go into permanent remission (but probably not), you may live your whole long active life with mild intermittent symptoms, or you might develop a more severe case (but probably not).  I'll bet most members here fall into the last category.  It just makes sense because they need more support.  So don't be scared about some stories you read here or on other websites.  They're true but not representative of all or most cases.

You should also keep in mind that Crohn's is still largely a mystery.  Some people swear by certain diets, while my GI told me to eat and drink whatever I want.  Can't say I can tell any connection between what I eat and my symptoms (although I have tried). 

Find a GI you trust and follow his/her advice and try not to worry.

I sure as heck hope no members find offense at what I write here.  God bless those who have found a diet that helps.  Whatever works for you  -- go for it! I came here because my condition has worsened (I'm 50).  I feel a need for support from people who know what I am going through.



Veteran Member

Date Joined Apr 2006
Total Posts : 1665
   Posted 2/19/2009 6:23 PM (GMT -6)   
hey Jordan, when I saw the 59 I wondered if it was a birth year...I will turn 50 in august, yikes!
I want to echo Jordan's comment about the wide range of possible outcomes. I have met folks who have a bad year and no problems again, so again, don't assume the worst, but get all the info you can. yp
49 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. December '06 had adhesions cut through a laparoscopy. Now taking Glycolax, Ultra Fiber Plus, Florastor, and DHEA. Have become gluten-free diet per naturopath's tests.

Regular Member

Date Joined Feb 2009
Total Posts : 39
   Posted 2/23/2009 10:16 AM (GMT -6)   
HI Yogprof, Yes I turned 50 in January. I've had crohn's since junior high but it wasn't diagnosed until I was 38 when I went to the ER with increased symptoms. The meds worked until I turned 48 and was diagnosed with a partial obstruction. Luckily new meds took care of it. It's wierd, but I kind of miss the flare ups. They were my weight loss program!

I"m new to the site, and am now interested in seeing if diet changes will work for me. The Imuran works, but the possible side effects are troubling.

Have a happy birthday. Plenty of fun left in life!

Regular Member

Date Joined Feb 2009
Total Posts : 62
   Posted 2/23/2009 3:51 PM (GMT -6)   
I soooo feel your pain and frustration. I was 10 when I was diagnosed. Back then, you had to explain what Crohn's disease was to the doctors.

I have never had the capsule camera before but I always thought it looked interesting. As for the athletics, once you get it all under control, you will totally be able to resume your life. In fact, being an athlete has probably helped you more than you know.

Good Luck.
Crohn's Disease
Diagnosed at age 9 in 1980
1st ileosecal resection 1989
2nd colon resection 1993
Chronic "D" and arthritis
Chronic rectal stricture with colonoscopy every 3 months to dialate
Insomnia since 1980 - I love my ambien!
SCUBA diver, Master's degree student, college graduate, Pet therapist

New Member

Date Joined Feb 2009
Total Posts : 7
   Posted 3/10/2009 5:02 PM (GMT -6)   
It's been a while, but I want to thank you all so much for the warm welcome and words of advice. I still don't know much more, but I did do the pill camera last week - did not realize how HUGE that belt & recording thing would be! I teach a college class, and there was no way THAT was happening!!! They really should warn you about that. Anyway, I see my GI next week, and I'm just hoping for a final answer. I'm expecting it to be the confirmation of Crohn's - and as unhappy as I am with that, at least I can get to work on really getting things regulated. I've been really frustrated with my GI because he's never actually sat down with me and explained Crohn's and what it means for me. Everything I know is from my own research. I intend to be a lot more proactive and assertive about this at my next appt - especially now that bills have rolled in and I see what the man gets paid! The Pentasa has helped somewhat, but I'm definitely not feeling 100% yet. Anyone know how long it usually takes to see significant change? I have definitely seen change, but is this as good as it gets? I also started a food diary finally - haven't noticed huge changes based on food, but now I want to look for the small ones. I'm working on the positive attitude, but it sure is hard...
I've learned a lot here and already appreciate the support.

Veteran Member

Date Joined Dec 2008
Total Posts : 947
   Posted 3/10/2009 6:09 PM (GMT -6)   
Welcome and good luck!
Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications: Asacol, Folic Acid, Multivitamin, Dbl. Calcium, Probiotics, Protonix, Monthly B-12 injections.

Living a Great life with my Wife and my two Chocolate Labs
Hunter & Hailey.
I love them dearly.

Veeka Vampire Volkova
New Member

Date Joined Mar 2009
Total Posts : 16
   Posted 3/10/2009 6:28 PM (GMT -6)   

Welcome to the forum, I am new also!

Its a pain being told you don't have Crohns then being told you do, 1 hospital said I don't and 2 more said I do.....

I feel your pain man! I used to be a gymnast and a trampolinist, I represented my country in the Jnr Olympics, now I can no longer do exercise properly due to my dramatic weight loss and inability to gain it :( makes me so sad....

Being told you have a life-long illness is scary, but you now have this community and everyone here is so lovely...You are not alone my friend!
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