Anyone here have Crohn's and/or Lupus?

[Zoeys mom]

I'm reaching out here because I feel like some of you are actual cyber friends and know I can not be alone in what has been happening to me recently.

A little back history is after the birth of my son who is 6 weird things started to go wrong with me. I was constantly tired, severely anemic requiring both red blood cell and iron transfusions, chronically tired, had unexplained rashes and fevers, and multiple gastrointestinal problems. I lost my health insurance shortly after these symptoms began but was told by my doctor's all my problems sounded autoimmune and I needed to go to an immunologist for testing...not possible due to lack of insurance. I took vitamins, supplements, tried to stay active, eat healthy, and abstain from drinking- but these symptoms came and went often requiring ER visits and I began to get rare forms of pneumonia apparently only common in the HIV positive community and cancer patients.

To make a long story short in 2007 I was told I "may" have Lupus. I thought "may" -don't you have a disease or not? Well essentially with many autoimmune disorders there are many blood work and other internal markers but not always one cut and dry test. They did say however, with the kind of anemia I have which is where my spleen kills my own RBC's Lupus was common among other symptoms I was having. I paid out of pocket when necessary for steroids, took anti-inflammatory's OTC, and other supplements. For three years though I had my ups and downs things were generally well controlled.

However, now again in 2010 the ceiling has begun to fall and this time worse than ever. I again came down with PPC pneumonia and was hospitalized for 2 weeks this time with insurance. The first hospital ran tests and said yep you have Lupus and Autoimmune anemia. I began a different drug therapy and everything got worse. I began having intestinal cramping that made child labor seem like a dream, chronic non-stop diarrhea, then vomiting, muscle spasms, the inability to hold my own body temperature, and generally began to think this was not just Lupus or Lupus at all. The first hospital completely ignored my GI issues and instead focused on my gall bladder which needs to come out as the source of the problem- but they didn't take it out then? Okay because while looking at my gall bladder they found a hemangioma in liver that is probably not cancerous, but daunting nonetheless. I released myself AMA and went to another local hospital today for additional testing and all my test results from 2007-2010 in hand.

The doctor looks at all my testing and says you may have Lupus, but did they mentions Crohn's disease? My response was no and what is that, he explains, and I had a colonoscopy and CAT scan today. I definitely have Crohn's and the anemia, but apparently the damage to my intestines is bad from lack of treatment. I am now on a super dose of steroids for the next 2 weeks and pain killers. I have googled the disease and read the packets they gave me and see so much conflicting info it's driving me mad.

I can't live on steroids and pain killers long term and honestly my symptoms are still very much there. For those of you that would be willing to discuss living with the disease, what works for you, or a loved one I would appreciate it on here or via PM. I feel a little alone right now to say the least and want some first hand experience instead of white coat thoughts on where we should go from here. Thanks so much

[dogsnkiddos]

CCFA.org: Home
Start there. Three of my friends have pretty serious Crohn's issues (my one dear friend had to have blood transfusions from the anemia recently- and she was under treatment for three years at that point!) and my daughter has ulcerative colitis. My husband and both kids have some serious GI issues and we are in the 10 week wait on some new, really cutting edge DNA tests (my daughter who is 6 was dx'd at 2 and had some awesome tests then as well). It is similar to things with Crohn's for her...
Anyway, If you are interested I can hook you up with some of my friends who are deep in to their Crohn's dx and treatments. Pm me if you are interested...

[dogsnkiddos]

I wanted to add...my two friends in particular took a whole approach- not just medical, but whole body- supplements, diet changes, exercise, etc to complement the medical programs suggested by their Doctors...

[Zoeys mom]

I'm on several supplements and when I can stay out of the bathroom usually job 1-3 miles a day as it is- it's my peaceful time,lol Unfortunately I now lay in bed or in the bathroom with cramping that is worse than labor and want to scream. I'm also on some high doses of steroids and pain meds which help, but unfortunately being loopy is not conducive to me working or being a mom I'm living on chicken soup, broths, pedialyte, and Gatorade. No more caffeine for me which is beyond depressing, no spicy foods, low fiber diet, and vitamins to replace what I am loosing though I can safely say I am loosing them too. I'm so dehydrated they couldn't find a vein to draw blood and my blood panels show I am mal-nourished. I really basically want to put my head through a wall right now and can't wait to see my specialist Monday.

[Renofan2]

So sorry you are going thru this. I can sympathize as it took over 5 years for the Dr.'s to diagnos me with an autoimmune disease called Adult Onset Stills disease. I also had unexplained high fevers, body aches, nausea and ended up in the Er several times. As with many autoimmune diseases I can go long periods without having a flare up but then out of no where it comes back. In addition the still's disease was complicated with severe endometriosis which caused years of pain. 3 surgeries later, and I have been pain free since July of 2009. It is possible that although you were diagnosed with one thing, you could in fact have several. Try and find a specialist that really wants to get to the bottom of your problem. Believe it or not, my dermatologist was the one who made an appt at a rhumatologist who was the one who figured out all my issues and came up with a plan to manage the disease. I hope you feel better soon.

Cheryl

[Zoeys mom]

I also have endometriosis and have had two surgeries since it has perforated my uterus now twice and will continue to every 3-5 years. I know the pain that causes though this Crohn's totally has that beat. I'm assuming a flare up with this and endometriosis at the same time will probably send me to the looney bin....seriously. I caved in and took 3 percocet and am actually sitting in an upright position typing. I just don't want to become one of those pill heads and I know long term use of a narcotic will lead to that. I discussed this concern with my doctor and he basically agreed yes many of his patients eventually become addicted and begin to need more of the drug to relieve the pain since the body recognizes the drug. I'm also on non narcotic pain meds but they are a joke so thus far I go without pain meds until bedtime so I can sleep and suffer all day to avoid any addiction,lol

As far as having multiple things they believe it is in fact Crohn's and Lupus though the Lupus is harder to diagnose- either way steroids are used to treat both. I just want my normal life back. I want to walk my dogs, go jogging everyday, play with my kids, and see the outside of my bedroom- I know I'll get it under control soon it's just this inbetween time that is killing me

[GSDElsa]

I know people that have either/or, but not both. I know with my friend with Crohn's, she has very similar GI issues as you. She was just hospitalized this summer for a horrible flare-up that resulted in her losing 30 pounds (she was already extremely thin to begin with), and being on IV steroids in the hospital for weeks. I'm not sure of the exact treatment that she went through, but I do know that this was in June and she is STILL weaning off the steroids that she was on.

[EJQ]

Hi there – I have Crohns disease. I contracted it 52 (yup 52) years ago when it was pretty much a mystery. My symptoms were horrible abdominal pain/craps. Lots of bleeding, skin rash. In those days the treatment before any surgery was with steroids. At age 19 I had a bowel resection. The entire ascending, transverse and descending colon was removed. That surgery “cured” the active Crohns but left me with a bucket full of problems. Chronic diarrhea, chronic dehydration, chronic electrolyte imbalance. All of this eventually led to the production of kidney stones (due to electrolyte imbalance). That resulted in the removal of my right kidney due to the damage done by the stones. Mind you, all of this happened early on. Things are different now. My family doctor referred my to a top gastroenterologist team and they pretty much put me on right track. I have been in remission for 36 years despite paying a VERY high price during those first few years. Right now I am on some very specific meds. There is no specific diet because I know what I can and cannot eat. Aside from the fact that I know the location of every bathroom in the Northeastern U.S. I’m doing well. If you would like some specifics on my meds and lifestyle etc, PM me. I’d be happy to talk to you about it. It’s a tough disease but you can deal with if you have the right tools and attitude.

[bianca]

I have no experience but I just wanted to send you huge

[LaRen616]

My brother in law has Crohns disease. When he has to go to the bathroom he has to go NOW. He doesn't have alot of energy, he's usually tired. He was thin and it took him a very long time to eat a meal. His doctor put him on steroids and he put on some weight and he has more energy now.