Visit from the Lupus board - lots of questions

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Victoria72
Regular Member


Date Joined Oct 2006
Total Posts : 221
   Posted 3/21/2008 10:39 AM (GMT -7)   
Hi all.  I have been lurking for a while on your board.  I have learned a lot and you are all amazing to have been through what you have. 
 
I have been diagnosed with Lupus and mild Crohns.  I have had a hard time with treatment for either of these conditions because of my body's intolerance for most types of medications.  I am allergic to to all Sulfa drugs and have experienced severe reactions to plaquenil, Imuran, and methotrexate.  My ANA titer sits at 1:1280 currently, so needless to say Im pretty miserable. sad
 
Heres my question:  I have finally, after three years, made the connection between the condition of my colon and the way I feel.  Last weekend, I ate raw honey at my mothers house.  Within three hours, I was in a full blown flare.  Spinal swelling, top to bottom, stiffness and horrible diarrhea.  Anytime I try something like green tea, lots of fiber, my  body goes into fits and I am nauseated, dizzy and weak for days with diarrhea.  Does this sound more like the Crohns or the Lupus?
 
I dont like my gastroenterologist.  He is a complete jerk.  He doesnt listen, he thinks his way is best, and doesnt believe me when I tell him that the sulfa drugs caused my heart to have arrythmia, and my skin to blister.  I even showed him the paperwork from the ER telling me not to take those meds again.  Obviously I need a new gastro... but if I find a new one, will I need to go through all the testing again?  I certainly dont want to have another colonoscopy!
 
Also,  what do you eat to keep your colon settled down?  I love fresh foods, salads, etc...  those just seem to aggravate me.  And forget about spicy. All the foods I love make me so sick.  I experienced pancreatitis in 05, and so I also have to stay away from greasy foods.  Im down to mashed potatoes and pasta.
 
I am a mother of four (three teenagers, and an an 11 year old), I work full time in the IT field, but its getting EXTREMELY hard to press on and keep up! There are mornings I literally have to pray myself out of the bed from the fatigue and muscle pain.
 
Do any of you get these extraintestinal symptoms of Crohns, even when its considered mild? 
 
And... has anyone tried LDN? (Naldextrone.)
 
 
Thank you SO much!!
 
Blessings,


 
Victoria
 
Mother of four, full time Systems Analyst
 
Crohns, Lupus (SLE) Jan 08, Pancreatitis Dec. 2005
 
Meds:  Medrol injections, Cellcept, Vicodin, Benadryl, Zyrtec

Post Edited (Victoria72) : 3/21/2008 1:06:15 PM (GMT-6)


mom2carrington
Regular Member


Date Joined Sep 2005
Total Posts : 69
   Posted 3/21/2008 10:53 AM (GMT -7)   

God bless you for having to go through all of this. My father had lupus and my grandfather has a colostomy bag (sp?) now due to colon cancer. I am not as familiar with lupus as I am CD so I can't much help with that.  I can tell you I have experienced pain from eating the wrong foods just about every day.  After asking people on this board, I learned a low residue low fiber diet would be best for me. (I have a stricture and I am lactose intolerant) I drink the lactaid milk and take lactaid pills before ANY kind of dairy. I have started taking fish oil pills and drinking at least 32 ounces of water a day if not more. Just in the last few days I have noticed I have no cramping. I do not take meds for the CD. Oh, I also take 2 children's gummy vitamins each night. You may want to "google" low residue diet and try it. So far it's working for me!

Good Luck!


~Never officially diagnosed~
Appendectomy in 2001. Appendix perforated & gangrenous. Had pain off and on for 3 years prior. This is where all my trouble started.
Hospitalized in August 2005 with a bowel obstruction.
Colonoscopy showed definite colitis, SBFT showed narrowing of the Ileum and a possible fistula.
Both tests came back as consistent with CD.
2nd bowel obstruction February 2008. Got through it at home.
Currently not on CD meds. Following a low~residue diet and taking fish oil daily.


mom2carrington
Regular Member


Date Joined Sep 2005
Total Posts : 69
   Posted 3/21/2008 10:55 AM (GMT -7)   
Oh, I should add I too feel tired and worn out every day before I even get out of bed and I would definitely consider my case mild.  I have cd with constipation...not so much the other unless I am flaring. The I definitely have it. :-)
~Never officially diagnosed~
Appendectomy in 2001. Appendix perforated & gangrenous. Had pain off and on for 3 years prior. This is where all my trouble started.
Hospitalized in August 2005 with a bowel obstruction.
Colonoscopy showed definite colitis, SBFT showed narrowing of the Ileum and a possible fistula.
Both tests came back as consistent with CD.
2nd bowel obstruction February 2008. Got through it at home.
Currently not on CD meds. Following a low~residue diet and taking fish oil daily.


Victoria72
Regular Member


Date Joined Oct 2006
Total Posts : 221
   Posted 3/21/2008 12:16 PM (GMT -7)   
Mom2C, thanks so much for your response! I had no idea Crohnies dealt with the same debilitating fatigue that Lupies do. Looks like you have been through a lot, too. :( Yep, the low fiber looks like the better choice for me as well. Ive heard great things about fish oil and Im picking up some of that this weekend. I already drink tons of water... I guess my big downfall is the coffee. I am so hooked. I have two cups each morning, and enjoy every single drop, and I cant even pass up a Starbucks without stopping for a Caramel Macchiato. Its definitely a weakness... haha. Usually it doesnt bother me too bad, but these past few months the flares have been nonstop, and I think the coffee is making a bad situation worse.

Thanks so much for responding! I hope to get some more pointers, especially on the fodds to avoid.

Blessings,
 
Victoria
 
Mother of four, full time Systems Analyst
 
Crohns, Lupus (SLE) Jan 08, Pancreatitis Dec. 2005
 
Meds:  Medrol injections, Cellcept, Vicodin, Benadryl, Zyrtec


mom2carrington
Regular Member


Date Joined Sep 2005
Total Posts : 69
   Posted 3/21/2008 1:45 PM (GMT -7)   
Yeah, I know what you mean about the coffee. I just recently switched to Foldgers 1/2 Calf. It has half the caffeine of regular coffee. Just enough to get me going and it tastes good too. Oh, and I can't pass up a starbucks either. yeah
~Never officially diagnosed~
Appendectomy in 2001. Appendix perforated & gangrenous. Had pain off and on for 3 years prior. This is where all my trouble started.
Hospitalized in August 2005 with a bowel obstruction.
Colonoscopy showed definite colitis, SBFT showed narrowing of the Ileum and a possible fistula.
Both tests came back as consistent with CD.
2nd bowel obstruction February 2008. Got through it at home.
Currently not on CD meds. Following a low~residue diet and taking fish oil daily.


Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4392
   Posted 3/22/2008 3:01 AM (GMT -7)   
Lupus can cause inflammation in the gut that is very hard to distinguish from Crohn's. If your Lupus symptoms flare at the same time as your gut symptoms do, then I'd consider thinking of the conditions as one and the same for now...and then ask your new GI doctor about it during your first appontment (that's when they usually spend the most time with you, anyway).

Just my $.02...
-Razzle
Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication Allergies, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD (Lupus?), Osteoporosis, Anemia, T- & B-Cell Lymphopenia, malabsorption/malnutrition, ?Lyme Disease (Igenex Lab IgM WesternBlot positive), etc.
Meds:  Pulmicort, Injectable Vitamin B12, Herbs, Nutritional Supplements, Homeopathy.


Mellie
Regular Member


Date Joined Mar 2008
Total Posts : 110
   Posted 3/22/2008 8:26 PM (GMT -7)   
Welcome to the board!  I find that raw vegetables tear me up pretty bad, as the fiber matrix is harder for your gut to process. Cooked veggies are easier for you to digest, as th ematrix breaks down. I use a probiotic, VSL#3, and it has helped a great deal with D.  I agree with the others. If you do not like your gastro doc, get a different one. You are seeing him for a serious illness, not a sniffly nose. If your condition is not treated properly there are adverse complications. You need a doc you can trust 8)  Best of luck to you!

Diagnosed with Crohns/Colitis in 2004. Currently taking Azulfidine 500 mg/3 x 3 day, Synthroid. Have had joint complications such as pyroderma gangrenosum in ankles as complication of IBD.


ozonehole
Veteran Member


Date Joined Dec 2006
Total Posts : 559
   Posted 3/23/2008 4:18 PM (GMT -7)   
I have only (only!) Crohn's, not lupus - having both would definitely be a drag. After reading up on lupus, it sounds kind of like Crohn's of the whole body, rather than just the digestive system.

Quite a few of us have both Crohn's and arthritis - like lupus, both are auto-immune diseases.

As for practical dietary advice, if diarrhea is bad and low-fiber helps you, one suggestion:

"congee" (Cantonese for "overcooked white rice"). Add some salt, only tiny bit of pepper if you can tolerate it, an egg for protein.

Also, I found that vitamin A greatly reduced my diarrhea. Not immediately, I needed to take it for about a week before it kicked in, but has worked well and I continue to take it. I discovered this by accident (I was taking vitamin A for my skin and eyes - the sudden disappearance of my diarrhea was unexpected). It seems better to take the fish oil vitamin A, rather than beta-carotene. Just take one a day, vitamin A overdosing it not recommended.

Hope this helps.

- Robert
Crohn's since 1988
3 resections

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