Newly dx with Crohns but have C!

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Alva
New Member


Date Joined Jun 2009
Total Posts : 2
   Posted 6/23/2009 11:57 PM (GMT -7)   
I was wondering if anyone had any advice for me. As of April 2009 I was dx with Crohns and Im only 21! After going to many dr's for months with abd pain in my right side, not being able to go to the bathroom, losing weight, and pretty much in constant pain all day long, they all thought it was my gallbladder and appendix (which after having them removed Jan 09 and March 09 only to find out that was NOT the prob) I was finally scoped n told the biopsy was "compatible with crohns" ughh. Though with my crohns i have constipation --i hate it-- but also glad its not the big D, which i think thats why the drs never considered it to be crohns! I am wanting to know if anyone else suffers with C like i do and what are some things that help b/c my meds dont seem to work! Im on Imuran, Entocort, protonix,and a vitamin. When first dx in April dr had me on Prednisone, some antibiotics, and Pentasa but i couldnt afford the pentasa (which was working i might add) so he swapped me over. Now he says if the Imuran doesnt work we will have to try other meds...(REMICADE, ETC) Does anyone have any suggestions on what is helping control their crohns AND with the constipation?!? I really want it to go away but know thats not possible! I'd really love to hear some feed back THANKS!!!! :-)

Wolfie40
Veteran Member


Date Joined Dec 2008
Total Posts : 947
   Posted 6/24/2009 4:07 AM (GMT -7)   
For me a proper diet helps with the Crohns and exercise too. Constipation! Whats that? I'm as regular as they come. lol
Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications: Asacol, Precription Folic Acid, Multivitamin, 1000mg Calcium, Vitamin D, Probiotics,  Monthly B-12 injections.

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


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 6/24/2009 5:58 AM (GMT -7)   
Hi Alva and welcome to Healingwell. I too suffer with constipation and not diarrhea. I use stool softners everyday in order to keep things soft and easier to pass. If I don't use these everyday I will be in a world of hurt. I too was diagnosed young, I was 18. Been living with this darn disease over 30 years now. Hope this helps.

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

ISF13+
Regular Member


Date Joined Jun 2009
Total Posts : 202
   Posted 6/24/2009 6:25 AM (GMT -7)   
Alva,  welcome to the world of Crohns.  First off, you're not alone.  Secondly, you won't ever "get rid of it".  It's now your friend (or should I say enemy) for the rest of your life.  However, it can go into remission which are the good times.  I go back and forth between constipation and diarrhea with my Crohns.  I have more of the big "D" than the other but it still varies.  I, too, was on the Pentasa for quite a long time.  I took it with the Imuran.  The Pentasa stopped working for me as have most of the drugs I get on.  They seem to do the job for awhile but then stop.  With this current bout I'm going through, I'll be interested to find out what my GI doc puts me on next.  As for the cost of the Pentasa, try notifying the pharmaceutical company that makes it, they usually have programs that will help you pay for your medication.  I was able to get help paying for my Humera injections and I have a full time job and I'm insured.  My advice, get a good GI doc - one that has compassion for your disease and will let you help make the decisions as to your care - talk to whomever you can about it so you don't feel like your alone - try and find a local support group.  I love my support group.  Last week the ex pro football player from the San Diego Chargers - Rolf Benirschke - came and spoke.  It was great.  Being around others with the disease has really helped tremendously.  Ask questions and try and stay positive.  We're all here for you.   :-)
Crohn's Disease. 
Diagnosed 13+ years ago. 
Been in remission for short periods of time but each time I come out of remission my disease seems to have spread.  No longer isolated in my ileum, now from stomach down to rectum.
Current Medications:  Humera 40mg injections every other week, Imuran 150mg, Levsin, Welchol 625mg, Prednisone 10mg(started weaning off, now going back up in dosing).Canesa suppositories
Misc:  I recently joined a local crohns disease support group that meets monthly.  It has been great talking to and meeting other people who share the same disease.  I hope to continue gaining insight through this forum as well.


janicea
Regular Member


Date Joined Feb 2009
Total Posts : 350
   Posted 6/24/2009 9:28 AM (GMT -7)   
milk of magnesia. i'm right there with you. I take a full dose about 3-4 times a week. totally takes care of the problem, and according ot my docs, it's totally safe. you might want to try a lower dose at first. I'm able to take it before bed, and then i go in the morning. You might have adhesions from the previous surgeries plus a little crohn's internal swelling? that's the deal with me. anyway, it's cheap and easy, give it a try!
strictures, crohn's, adhesions, endo. Pyoderma Gangrenosum.
Trying LDN 4mg nightly ~ because I'm allergic to pentasa and 5ASA's I'm taking Boswellia Serrata. Olive Leaf extract. SCD yogurt. Using silver sulfadiazine on Pyoderma . B-12 shots. Juicing veggies!


njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 6/24/2009 9:46 AM (GMT -7)   

A top Crohn's pediatric GI misdiagnosed my daughter, saying she looked fine, because she had C and not D. So yes, it sucks to have C because so many docs think Crohn's = D.

She hasn't had C since she started making homemade yoghurt, aged at least 24 hours. 


Alva
New Member


Date Joined Jun 2009
Total Posts : 2
   Posted 6/26/2009 1:25 PM (GMT -7)   
Thanks everyone! :-) It has been difficult dealing with this disease (I'm sure thats an understatement that you all already know) I really think mine isnt responding to my meds because i have constant pain ALL the time, but my GI doc wont give me any pain meds b/c he says "it will stop you up more" DUH i already knew that b/c im in nursing school about to finish my last semester (YAY!) So Im wondering how do I convince him to give me something for the pain, Ive been on percocet before which does NOTHING to stop the hurting, oxycotin 10 mg and demerol 50mg PO doesnt affect me either, its like taking an aleve!! Im lost and dont know what to do about it, I thought about seeking a pain management doc BUT i dont want him to think im a drug seeker b/c Im definately not wanting them "for a good time" i just wish the pain would stop bc it goes up into my right rib cage and back and all in my lower abd! Im afraid that i might have an obstuction and I have already made an apt with another GI doc but my prob is that my current GI doc used to work in the same office suite as the other (new) GI doc that I want another opinion from & Im afraid that It might piss my current GI doc off since im going to this other one instead.... Though I know i should do whats right for my health and be my own advocate! Does anyone have advice for me on the subject of the pain meds and what might help.. THANKS again for all your replies.. this makes me feel better to know that im not the only one out there and that I finally have some ppl to talk to!! :-)

ISF13+
Regular Member


Date Joined Jun 2009
Total Posts : 202
   Posted 6/26/2009 1:39 PM (GMT -7)   
Anytime Alva!! :)
Crohn's Disease. 
Diagnosed 13+ years ago. 
Been in remission for short periods of time but each time I come out of remission my disease seems to have spread.  No longer isolated in my ileum, now from stomach down to rectum.
Current Medications for the Crohns:  Humera 40mg injections every other week, Imuran 150mg, Levsin, Welchol 625mg, Prednisone 10mg(started weaning off, now going back up in dosing).Canesa suppositories, Calcium, Acidophilus & Potassium
Previous Medications I've been on:  Asocal, Pentasa, Flagyl, Cipro & Entocort
Misc:  I recently joined a local crohns disease support group that meets monthly.  It has been great talking to and meeting other people who share the same disease.  I hope to continue gaining insight through this forum as well.

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