Introducing Myself

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Idolwild
Regular Member


Date Joined Sep 2007
Total Posts : 29
   Posted 9/10/2007 2:10 PM (GMT -7)   
Hello all - new to this forum, and officially new to the disease.

A little background:

about 10 years ago, when I was 22, I got this "mystery illness" - chronic diarrhea and tremendous weight loss (in the end I went from a nominal weight of 145 down to 115). I was waiting tables at the time so didn't have anything in the way of medical insurance - I did go to a clinic and they sort of shrugged their shoulders and told me "IBS". In the end, I suffered through it and it eventually went away. I met my wife at around that time, and once she moved in my diet changed around to less "convenience" food - maybe that had something to do with it going away.

Fast forward 10 years later, late June, I start getting abdominal distention and just a general feeling of "something is wrong down there". Then comes the unformed stool. Then the weight loss. I am a programmer for Florida Power & Light and we have a clinic at our headquarters in Juno Beach, so I go downstairs to see the doctor. Guess what - another "must be IBS". He tells me to start taking a fiber supplement. A few weeks of this and I start getting headaches, all the time. I figure it's a sinus infection since I get these alot so I go downstairs again. See someone new, she gives me a scrip for an antibiotic and tells me to take Advil for the headaches. So I do. Lots of it. A few more weeks of this and BAM - a veritable bloodfest in my next BM (sorry for the graphic there). Freaked, I go to our local hospital where I'm immediately admitted. Tests, tests, and more tests. Xrays, CAT scans, blood tests, colonoscopy, - GI Doc at the hospital says, "Yup - it's Crohn's". *Sigh* Truth be told my wife and I are fervent internet diagnosers, so for the worst-case scenario this is, at some level, what I already suspected I had.

So liquid diet sans dairy and 40mg prednisone (this is a traditional GI Doc here, no top-down) and Asacol, Protonix, a short course of 2 antibiotics and a multivitamin and he discharges me. Two weeks of this and now a followup. Antibiotics are done, graduate to a low-residue diet, and start tapering the Pred.

Headaches gone (it was the dehydration from the D, duh). Stool starts to look good again, brown, formed - we're talking "reference poop" here (as an aside it's amazing how desensitized one gets to hauling your butt out in front of multiple strangers and talking about your inner poo with family and doe-eyed friends). Abdominal distention (I like to call it "The Rotgut") still there, especially after a long work day, but not too bad.

Anyway, all seems to be going well until last Monday, distension starts coming back full force and so does the unformed stool. Oh well. Call the doc, puts me on a clear liquid diet through the weekend (god I miss salad) and wants to see me today.

Sooooooo today I go to see him, wants me back up to 40mg Pred a day (I had tapered down to 20/12.5 when the Flare restarted) and has now put me on a 6MP - Purinenthol, 50mg.

So that's where I'm at. We'll see how this goes. Right now, I'm mainly in reading and learning mode. I know there are so many options, combinations of drugs, alternative therapy, herbals and supplements, diets and no end of opinions on this thing. I don't even know if I'm going to stay with this GI Doc. He's nearly impossible to get a hold of when you want to ask a question, but for now his approach seems traditional. I suppose I should give that a try first before I start eating dirt or worms or other wacky things.

My biggest discomfort is the abdominal distension - I can't sit for any length of time - standing or laying down is fine, but the sitting kills me - not so good for a programmer.

So anyway, nice to meet you all - I'm sure I'll be chiming in from time to time.

- Darren

Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 9/10/2007 4:42 PM (GMT -7)   

 

         Well, let me be the first to do it. Welcome to HealingWell, but I'm sorry you needed to come here. I hope you find it as useful as most of us have. A great support network..

       As for your history, that sounds all too common. BTW, has your GI given any thought as to your long care treatment? Anti-biotics & pred tapers are good only short term. Unfortunately, this is a Life Sentence.

 

    Sincerely,

    Matthew

    Dxed with "mild" UC in Feb. '92. Dxed with Crohns in August 19993.


dragonfly137927
Veteran Member


Date Joined Sep 2006
Total Posts : 2527
   Posted 9/10/2007 4:45 PM (GMT -7)   
Welcome to HW, glad you finally have a dx. I have had CD for 20 yrs (dx that is). My CD was controlled by meds up until this year when my ileum perforated and needed emergency surgery. My GI last yr didnt believe I was flaring but when he finally saw test results confirming what I told him he didnt change much of anything. After my ordeal this year I changed GIs and now the GI I see is a CD specialist. You may want to go to the CCFA site and search the Drs listed there there may be one you may change too or use for a 2nd opinion if things change. As for the distended stomach I always have it sometimes worse than others. I use gas-x to aide in that and it helps sometimes. Since my Sx i have more D than before, I mainly had C CD with occasional flares with D.
Dx with Crohn's 1987, symptoms as early as 1984.
Temp iliostomy February 2007, reversed June 2007, Ovarian cysts, migraines, allergies (incl food allergies) , oral allergy syndrome (diff than true food allergies), Asthma, Gall Bladder removed 1999, Inguenal hernia 1987
 
 


chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 9/10/2007 5:53 PM (GMT -7)   
Welcome!

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 9/10/2007 6:11 PM (GMT -7)   
Hi Darren Welcome glad you have joined us we are here for each other. The first thing I did was read the forums and learn before I joined it was a very lonely life without HW, and it has helped releave the stress. Glad you are now able to get the help you need it can be a relief to finally have a answer of course I feel I could have lived quite nicely without it but cain't go back. I found the low roughage diet was a great help to me how is it working for you? lol gail

momoftwoangels
Regular Member


Date Joined Jul 2007
Total Posts : 222
   Posted 9/10/2007 7:43 PM (GMT -7)   
Welcome, Hope that you start feeling better soon. We will all be here whenever you need us.
Heather
Living with Crohns for 1 year. I have a wonderful husband and two beautiful little girls.
 
One blessing that came with my Crohns: I thank God for each day that I can get out of bed and take care of my girls and my home.


Idolwild
Regular Member


Date Joined Sep 2007
Total Posts : 29
   Posted 9/11/2007 6:42 AM (GMT -7)   
Matthew I think his short term goal is to get me out of this flare. According to him, the colonoscopy revealed what he characterized as "moderate to severe" damage to the large colon, including ulcers, granualnomas, scarring and just general angryness. He says it's likely I've been in a low grade flare for "years" and the Advil is what finally pushed me over the edge.

Long term, I'm sure he was hoping the Asacol would do it, and now the 6MP. I suppose they just keep trying new things until something seems to work. Like I said, he's a pretty traditional GI Doc, so he's not going to offer any of the non-medically proven alternatives to me, that will be up to me to try and evaluate.

Idolwild
Regular Member


Date Joined Sep 2007
Total Posts : 29
   Posted 9/11/2007 6:43 AM (GMT -7)   
dragonfly - excellent idea on the CCFA site and looking for new docs, hadn't thought of that - thanks!

MikeB
Veteran Member


Date Joined Mar 2006
Total Posts : 1169
   Posted 9/11/2007 7:45 AM (GMT -7)   
Your disease course is almost identical to mine -- early symptoms at 19 for me, IBS diagnosis, big bleed in early 30s, scope and real diagnosis. I have also followed the bottom up treatment protocol and am on 6mp long term (age 60 now) and doing well, no surgeries or major complications. Be aware that it can take 3-6 months for 6mp to really reach effectiveness. Sounds like you are minding diet and such . . . as for the bloating, that sounds like gas. Might ask for some meds to counter that for a time until the 6mp (hopefully) gets you into remission.

HabsHockeyFan
Veteran Member


Date Joined Jan 2006
Total Posts : 3130
   Posted 9/11/2007 7:54 AM (GMT -7)   
Welcome! This is a great place for support and discussion. Athough your doc is more traditional in approach, you have jumped to the 6mp faster than any doc ever mentioned it to me so your seem to still be moving forward in treatment. If that means anything to you.

As far as the distention...yeah stinks with a desk job. I am an underwriter so I sit at a computer all day too. I have a few ideas for you if you haven't already tried them.
-There is an ergonomic chair that felt great when my tummy was bloated--it is the one that you are almost kneeling and sitting at the same time---check out chair options as the sore tushy also comes into play. When my office moves into my home, I will get one of these.
-I had back surgery and found sitting causes pain to reoccur. It helps my CD bloat now that I intentionally stock my printer only half full so I have to get up to fill it more often. I also set a timer for 45minutes on my laptop so I remember to get up and walk around (helps keep your vision more stable too).
-Do you have peripherals or just a laptop? I have the extra keyboard and mouse so I tilted my chair back for now and lay them on my lap to take pressure off the tummy.

Hope you get to a more comfortable and stable CD life and keep chatting!
Dx'd '90 (emergency rupture), symptoms ignored long before that, '03 fistulas and bad flagyl reactions, B12 weekly, Pentasa [until I surrender to the bigger meds]
I'm riding on the escalator of life....


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 9/11/2007 8:14 AM (GMT -7)   
Darren
Sorry for the reason BUT sure am glad you found us here at HW
A better place for support answers ....empathy and UNDERSTANDING as well as all the fantastic ppl you will not find anywhere else and yep I am a wee bit biased lol....no shame ...

I have had and still get the dissention of the belly I look like I am ready to give birth and you are so right it is very uncomfortable to say the least ......

I have constant D and weight loss is unbelievable even with Pred I take .....

I am very strict about my diet BUT I will admit I have cheated and paid dearly for it .......And it was salad..........lol Can laugh now but not at that time .......
Read the other threads as well as check out Resources to see if there is anything that interests you or you can relate to in other posts ...I am sure there is .

I do hope you continue to post and you will see the support I have mentioned........
Take care and STAY with us .......LYN
    Contribute today to support Healing Well Forums...Donate @
 
Moderator for Anxiety /Panic
Moderator for Alzheimer's
Co Moderator for Crohns Disease 
 
 DX with Crohns, Pyoderma Gangrenosum,Anxiety /Panic
 
  
          Be Thankful for the Difficult times..During those times we GROW
 
                 EMPATHY is Always Better than APATHY
 
                 " Friends Are Cheaper Than Therapists "
 
  
                                  


Idolwild
Regular Member


Date Joined Sep 2007
Total Posts : 29
   Posted 9/11/2007 8:17 AM (GMT -7)   
MikeB - when did you start on your 6MP course? Do you find yourself getting sick (regular cold, etc) more? Is it harder to recover from the occasional sickness?

HabsHockeyFan - man, ya - the bloating really stinks. Sometimes I just wander the house but can't really DO anything :) By "ergonomic chair" do you mean one of those kneeling chairs? Or just a Really Nice Chair?

I have a laptop at home, I have one of those over-bed tables coming from Amazon for the days when I just can't muster getting up and around. I might use the Crohn's diagnosis as a reason to reward myself with a nice 30" Apple Cinema Display and plop that on top of the table. That way I can just use a wireless keyboard and mouse and nothing has to lay on my gut. Gotta love my reasoning there.

Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 9/11/2007 11:15 AM (GMT -7)   
Aaahhhh, Good. I must have missed the Asacol & Immuran part somehow, though. Anything less wouldn't have been acceptable.

Ciao,
Maathew
New Topic Post Reply Printable Version
Forum Information
Currently it is Friday, December 09, 2016 10:01 PM (GMT -7)
There are a total of 2,735,737 posts in 301,325 threads.
View Active Threads


Who's Online
This forum has 151428 registered members. Please welcome our newest member, livefreeinhealth.
283 Guest(s), 8 Registered Member(s) are currently online.  Details
Mews2much, geop, Tick41, Sheeks175, Grazzed, Sarakt, Octorobo, Csweeney1002


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer