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Roxette
Regular Member


Date Joined Aug 2008
Total Posts : 63
   Posted 8/26/2008 5:48 AM (GMT -7)   
Hi All, im new to this so bare with me tongue
 
I was diagnosed with Crohns in April of this year, although my doctor said its the mild verison.
Im on Pentasa (two tablets three times a day) and Endocort (i think thats what its called its a steroid) once  a day (have been reducing my dosage each month as per docs instructions). I also take calcium supplements.
 
I dont really know much about this disease and would be glad to know what other people are going through, how it affects them and if they use alternative medicine.
 
I originally suffered with severe diaherria and fatigue and after a colonoscopy my diagnosis was made.
Since starting my medication the diaherria has stopped. However i still dont feel Well. I get really bad aches in alot of my joins, have a horrible rash across my stomach, chest and parts of my leg. I get night sweats and am constantly tired.
My doc said i have mild crohns but could all of the above be caused by that??
 
I just feel really lost at the moment.
 Im sure my boyfriend is sick of listening to me complaining.
To be honest im nearly sick of myself complaining at this stage.
 
Im from Ireland also. Dont know if its relavent to say that idea

MikeB
Veteran Member


Date Joined Mar 2006
Total Posts : 1169
   Posted 8/26/2008 6:14 AM (GMT -7)   
Yes all that could be caused by Crohns. Your medication regime sounds about right. Quite often it can take some months for meds to fully kick in, and if these do not do more to alleviate your symptoms, you are really at the bottom of the medication ladder -- there are a number of additional meds to try. One important thing to understand about Crohns is that every patient's situation is different and unique, and that this is a disease with flares, which means it can wax and wane over time. The fact that your GI has indicated you have relatively mild disease is encouraging, so hopefuly you will avoid the more troublesome complications like fistulas and strictures. I would suggest you may want to scan some of the basic information here and on other reputable sites, like CCFA, and also check the posts here, which are added to all the time, for information and experiences that relate to you. This is not a common disease, but it is far from rare either. Most folks live relatively normal lives with it, managing it as they go along, so don't get discouraged.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/26/2008 6:31 AM (GMT -7)   
I think MikeB said it very well. But I did want to take the time to welcome you to Healingwell. You will find alot of supportive folks. I think you have come to one of the best places to learn how others with this DD (darn disease) are learning to cope with disease also. Look forward to hearing more from you soon. And don't feel bad about venting, thats what we are here for.

God Bless,
Gail *Nanners*
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


Roxette
Regular Member


Date Joined Aug 2008
Total Posts : 63
   Posted 8/26/2008 6:46 AM (GMT -7)   
Hi, thanks for replying so quickly!

Delighted i stumbled upon this site as there is very little information and support in Ireland itself. There is lots of info on here and so re-assuring to know other people are going through the same thing and that i am not mad.

Many people treat me as if im a fraud! They dont think Crohns is a "real" disease!

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/26/2008 6:54 AM (GMT -7)   
Roxette you will experience that alot with this freaking disease. The problem is most of the time on the outside we don't look sick, but inside we are dying from the misery. I think it took my emergency resection for even my family to realize just how sick I really was. Of course, I had a very mild case of Crohns for the first 20+ years I lived with it. Luckily my husband is wonderful and he see's first hand how sick I get, so at least I have him.
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


Tj1
Regular Member


Date Joined Jul 2008
Total Posts : 71
   Posted 8/26/2008 11:29 AM (GMT -7)   
Just wanted to welcome you and let you know this is a great bunch of people, they are very supportive and have a lot of great info.
 DX'd with UC 2000.
 DX'd with CD 8-9-08
 
 allergic to Asacol
 Colazal made it worse
 Prednisone 20mg X2 daily   
 Flagyl 500mg X2 daily
 First Remicade infusion 8-9-08
 
 Toprol XL --  Hypertension
 Insulin   --   Diabetes 


smile1967
Regular Member


Date Joined Jan 2008
Total Posts : 174
   Posted 8/26/2008 2:46 PM (GMT -7)   

Hi Roxette, just wanted to also welcome you to Healing Well. I read the posts here everyday and it is very comforting. I admire and learn from everyone. Feel free to ask just about anything, not much here goes untalked about!!!

Everyone here has such different experiences. What works for one person doesn't mean it will work for the next. Alot try different elimination diets to see what works for them. Keeping a food journal helps quite a bit to help figure out what aggrevates your intestines. Specific Carbohydrate diet, Maker's Diet  and low residue diet are a couple to mention that people have had good results with.  "Breaking the Vicious Cycle".com is good source of info and the book is very good. (I can't figure out how to turn off the bold font!!!)

I am on the same medications you are on, except I just weaned myself off of the entocort. I felt it was not helping. I do not suffer from the "D" anymore (since being on Pentasa) but now my stools are quite pencil thin and I go every few days. I also am extremely fatigued as you and have some joint pain. Unfortunately these are quite common symptoms with this disease. I cannot help much with the rash you have but maybe some else will be along soon to comment with their experiences.

Calcium is a good supplement to take as it tends to have a constipating effect to help you with the "D". Probiotics might also be something else to consider adding to your daily meds. Just type in Probiotics in the search site and you will find alot of good threads to read.

Please keep posting and take care,

Shelley


  • 41 yr old farmwife!! and mom of boys 11 and 9
  • resection surgery Feb. 2008
  • Pentasa, Entocort (when needed), citalopram,probiotic
 


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 8/26/2008 3:06 PM (GMT -7)   
I think it's important to note to you too, in light of people not thinking that it is a real disease, to NEVER let anyone tell you that it's your fault or that if you had just eaten this way or exercised this way you wouldn't be where you are or that you can cure yourself by changing those things. Of course you have to watch them after diagnosis in order to maintain yourself, but please don't let people start that horrible mess on you.

As for myself, I was diagnosed this past May with severe Crohn's and have been in and out of the hospital all summer for it, BUT I am currently in the process of getting better(I'm well enough now to attend school under certain conditions, and I can run minor errands provided I have something to support me when I walk like the shopping cart). I take Pentasa, alinia(an antibiotic), prednisone(steroid, currently weaning off of it 5 mg a week), bentyl for cramps, a heavy dose iron supplement for severe anemia, omeprazole for a small hiatal hernia, and then I also take calcium and vitamin C supplements as well as bee propolis which is a natural anti-inflammatory supplement and then I just recently started trying taking a digestive enzyme tablet. I'm not sure if it works yet or not but we'll see.

As for the symptoms. They're all basically nothing new in comparison to what you will read from other members. A lot of blood loss in the stool, diarrhea, stomach pain, fatigue, stiff joints, occasional nausea, and definitely some occasional depression/irritability!!!

Don't let this disease get you down though!! If anything I am really grateful toward it in the sense that it has opened my eyes to what is really important in life. It's also shown me some beautiful things about the world that I would NEVER have seen had I been the person I was before(so jaded and ungrateful..).

This is a great place for you to talk about it, and I definitely encourage you to do so :) It's been a great place for me personally to vent and get some very good answers to things I was wondering about. I'm also new to this disease, but this place has helped to cope and understand so much. I hope you stick around!
20 years old, Diagnosed with severe Crohn's and colitis in May of 2008.
Currently taking:
Prednisone, pentasa, alinia, bentyl, prilosec, tandem plus, and the occasional ultracet
Surgery for ectopic pregnancy(very possibly due to Crohn's inflammation) in July of 2008.
Due to start Imuran September 17 depending on blood results.


SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 8/26/2008 5:49 PM (GMT -7)   
Welcome Roxette, sorry you have to be here though. The people on this forum are compassionate and well informed, so if you need advice or just need to vent this is the place to come.
Take care
Jo

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 8/26/2008 6:46 PM (GMT -7)   
Hi Welcome there is a lady here from Ireland that is on sometimes. seems alot of us take B-12 and calcium . I am glad your doing good on your meds. Learning here by reading the post of others was a great help to me . I follow a low residue diet for myself as it seems to help. I have severe crohn's with fistula's at one time and abcess. No it's sure not in our heads but we wish it were. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail


Roxette
Regular Member


Date Joined Aug 2008
Total Posts : 63
   Posted 8/27/2008 5:51 AM (GMT -7)   
Thanks for all your help and support. I will defo. be logging on here again :)
Just reading through the stories and it appears i dont even know the half of it!!
Alot of you have had surgery; is this normal with crohns?

love_angels
Regular Member


Date Joined Oct 2006
Total Posts : 46
   Posted 8/27/2008 9:16 AM (GMT -7)   
From what I know (LOL)....If you get an abcess, fistula, or obstruction (blockage), and you would probably have moderate to severe Crohn's at that time, I BELIEVE those are the "Norms" for consideration of surgery.
And just in case you don't already know this...Crohn's cannot be cured by surgery. Surgery is only done when REALLY needed (again from what I know), because alot of times, if they take out a dieased part of intestine, it tends to reoccur elsewhere. Hope that helps.

lilturbo
Regular Member


Date Joined Feb 2008
Total Posts : 298
   Posted 8/27/2008 8:40 PM (GMT -7)   
Roxette,

Welcome! This site has helped me out immensely! I blog about my day to day life with Crohn's as it has helped my family and friends realize how severe and serious this illness can be. It has helped me out tons as well. You will go through tons of emotions, and sometimes I feel that my hubby gets frustrated, even though he swears he doesn't =) You'll have good days and bad, but just remember to keep your head up!

Take Care,
Emma
turboemma.blogspot.com/


LuckyStar01
Regular Member


Date Joined Mar 2008
Total Posts : 54
   Posted 8/27/2008 8:54 PM (GMT -7)   
Welcome:

You have come to the right place. Very informative,supportive.

Good Luck Sorry you were diagnosed.
Diagnosed 2004 - Chrohns and UC - Currently on no medication.
Multiple other chronic illnesses and allregic to many things.

Wish upon a Lucky Star!


Momikins
Regular Member


Date Joined Oct 2007
Total Posts : 77
   Posted 8/27/2008 11:00 PM (GMT -7)   

Hi & Welcome,

I, too, try to get on every night and at least read what others have said.  Sometimes I will ask a question or comment on what someone has said or try to help.  I think that the emotional support that is given here is so important.  We get a lot of help from the doctors for our physical symptoms but we need a place to turn for our emotional stuff.  After a while my family just didn't seem to want to hear about my Crohn's symptoms any more since I look perfectly fine on the outside, work a full time job, and do most of the work around the house it is hard for them to really truely understand what I feel on a day to day basis.  So, although my disease is in the early stages as well, I can come here to vent and get support....for that I'm extremely thankful!!!!!!!!!!!  I've also found that stuff that would embarass the casual listener doesn't embaress the people here.  You can feel free to bring up just about any symptom no matter how gross it is!

Welcome!  Welcome!  Welcome!

 


VIOLA19
New Member


Date Joined Aug 2008
Total Posts : 3
   Posted 8/28/2008 10:24 AM (GMT -7)   
Hi Roxette,

I was diagnosed with mild crohn in late 2005, my doc prescribed me to take Pentasa (8 pills a day), unfortunately i didnt take it seriously i was skiping on my dosages, smoking, eating poorly. etc.
If you smoke, thats the number 1 enemy for CD. Quit ASAP.
I Also had a lot of pain i the begining, frequent bowel movements, nausea, fatigue. Than it all got worse, staretd to have a lot of attacks, was hospitilized 4 times 2007, and 3 times in 2008, finally had a surgery in April of 08', had 6 inches of my colon removed, recovery was pretty harsh, lost a lot of weight (before that was on steroids, tried remicade, pentasa, 6mp, and entocord, nothing helped).
Its been almost 5 months After my surgery, feel good! Quit Smoking obviously, on 6mp 1 pill/day 50mg, watch what i eat, mush better now!!!! :)
I STILL HAVE THE BAD TASTE FROM THE EXPIRIENCE PRETTY MUCH HUNTING ME ALL THE TIME, BUT ITS A MATTER OF TIME. TAKE IT ALL SERIOUSLY RIGHT NOW DONT MAKE IT WORSE. many times if you treat it on time it wont get worse. Also, i read that if you use stronger meds that are usually used for severe crohn at the early stages of crohn/mild crohn it might help it from not developing more.

Sincerely, VIOLA.
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