View Full Version : What is going on?

01-12-2013, 08:35 PM
In the past year, I have had some rather odd medical issues. I went to the ER and was told I had a inguinal hernia and referred to a surgeon. Surgeon did complex CT scan and ruled out hernia and decided to do exploratory surgery to find out why I had a bulge in my lower right side. After the surgery, I was informed that they had removed my appendix because the main blood supply vein was "very angry looking" It was very bright red and enlarged, but had no infection of any sort. Surgeon was unable to find the lump at all let alone the cause. This was because the bulge only occurs after eating. I was then sent for a colonoscopy, in whihc a large polyp was discovered but was not the cause of the bulge. It was determined that when I eat, the food moves too fast through the small intesting and gets backed up at the entrance into the large intestine. A diagnosis of IBD was issued and told that I now need to have colonoscopies done every six months since due to my age (34) I should not have polyps at all. The other reason for the surgery and colonoscopy other than the bulge was weight loss. I went from 138 to 118 in under 2 months. Prior to all the gastrointestinal issues and occuring since, I have had horrendous flares of mouth ulcers. These last two episodes, the ulcers went into my nose as well. I had to go to the ER for the last one since my entire face was swollen and I could not even get liquids into my mouth without excruciating pain. I was given morphine and a mouth rinse. None of the 4 drs. knew what it was. I ended up calling my pcp for a prescription of prednisone, which was the only thing that helped. The episodes of mouth ulcers have been occuring for the last 6 years. The day after I delivered my son, I broke out in a rash that covered the entire front of my torso. It was so itchy and red, and nothing I did helped. Went to the dr, and he said it was probably poison ivy! I knew that wasn't possible since it was winter and snow on everything, not to mention the fact I had not been outside since 29 weeks pregnant due to bed rest from preterm labor. The rash persisted and I was then sent to a dermatoligist who said it was stress induced and would clear up on its own. This March will be 13 years ago that this rash was supposed to just go away. It is now limited to the area of the chest near the armpits on both sides. It flares up, is super itchy and scaly. The only thing that works on it is the steroid cream I was given by the dr for my hands which peel and itch- no rash. She said that I am allregic to water, which makes no sense, because only my hands peel. I now have to drink ensure high protein just to maintain my weigh, which has plummetted to 104. And as far as energy... that is something I believe to be a myth. I am so incredibly tired all the time. I think I can sleep standing up. When I do push myself to get things done, I am in so much pain the next few days, I can barely get out of bed. I am starting to have memory issues as well, for example, at work the other day I thought the manager was playing a prank when he told me what my station was because I forgot that we had a station in that area. He thought I was an idiot! Anyway, I have been researching what can be causing all of this and came upon lupus. It seems to fit for the most part and my grandmother also had it. I need to figure out if I am crazy or should I just tell the doctor to test for this specifically?

01-13-2013, 08:15 AM
You've suffered enough that I would just find a friendly, caring doctor. Explain your story, and say you are concerned that you may have lupus or some other autoimmune disease. That your rash responds well to steroid cream may be telling. Autoimmune diseases are notoriously hard to diagnose, so finding a good primary care doctor and a good rheumatologist is important.

Also, I would suggest you do some research on Behcet's Disease. That causes bad oral ulcers that are very painful, like the ones you mentioned. It can also cause GI problems that can be mis-diagnosed as IBD.

I am glad you found us here at WHL, and keep us posted on if you find answers. Also, the forums here are a wealth of information on people's experiences with autoimmune disease. I encourage you to go through them to learn about others' experiences that you'll probably find are quite similar to your own.


01-13-2013, 12:32 PM
Hi Momof5, and welcome to WHL. What blood work has been done on you? Echoing what Derrie says, there's all sorts of autoimmune stuff, including Hahsimoto's Thyroiditis that should be looked into. I've got similar bowel issues to yours, and have found that what I eat makes a big difference, so I avoid cow milk products & wheat. That's not to say that I don't eat pizza or cheeseburgers, just that I've reduced my intake significantly. I also do probiotic products. Doctor's consultation is advised. Diet is not a cure, just a help. There are meds also, that can slow down the intestines, and I have to use one (bentyl). You definitely have to state your case to the doctors, and keep after them about your issues. If you can, try to keep a diary (I'm supposed to, doctor's orders) and track the way you feel each day. I'm supposed to write down what I eat each day, when I take my meds, etc. Very boring stuff... |;^)

01-13-2013, 04:37 PM
Jmail is offering very good advice.I would make an appt with your PCP and express your concerns that you would like to have a lab panel done(as comprehensive as possible)as you are concerned that all the issues could be a flag that whatever is going on might be autoimmune.I wouldnt throw out any illnesses that you believe it may be as most dont like people that diagnose themselves via the web and will often discredit or half listen to someone who says "I read these symptoms on XYZ and they all fit" but listen more to someone who comes armed with all their symptoms/issues they have had written down in a clear concise manner and says help me please figure this out as I am suffering and need your help to try and figure this out.Keep a synptom/food diary that might help narrow things down at some point further down the road.

if the dr sends you for the labs(CBC,ANA,ask for a Vit D(this is commonly low in Ai illnesses even if you take a supplement,anti ds-dna(which is more specific to SLE and can also fluctuate) and a metabolic panel which will show lf any mteabolic function is off and could be causing issue)that should cover most anything that would flag enough autoimmune issue going on to warrant a referral to a rheumy who might further be of help if it turns out that there are things that flag off.

It could be months before you can get in to a rheumy and at least you have a referencel set to check against the ones the rheumy will run.If you do get sent and its say 6 months b4 you can get in ask your PCP to have a standing order written at the lab to repeat every 2 or 3 months for further comparison when you do get it(the standing lab will usually have a CBC and probably not the others unless something shows off on them and you require treatment from the PCP in the interm).

If the staff calls you and says labs are great ask for a copy to be mailed or picked up for you to keep.Check and make sure they are all within range often hurried or understaffed offices do make errors and without people having the labs and looking themselves it wouldnt have been caught.

Always keep/ask for a copy of your labs(the ANA can and does fluctuate and can change patterns also)I have heard of individuals who had SLE as a diagnosis and moved/had to change drs the ANA was reran for the new dr and because it came back neg the dr says well you dont have SLE anymore or were misdiagnosed.If you ever do go down the autoimmune diagnosis path and this happens with a new dr...find another one.

Make sure that you like all your drs or can live with any odd traits they have(abrupt,long waits,slow to call back if message left if you have issue,cant get in for appt if you are having problems(I often call mine and say heres the issue I am having do you want to see me or have me go to the GP?as it cuts down on going to PCP and being told to see rheumy after they get my copay and then I have to pay another one,rude staff but dr is excellent)because if it is autoimmune in origin your rheumy will be a huge part of your life.if it is SLE you will most likely hear "you need to call your rheumy" for most anything so make sure you like them as a dr and can deal with them as a person any issues they have that you cant deal with then I would look til I found one I liked.They do work for us not the other way around and I think alot of the time they forget that.

I hope some of this has helped and wish you muchh luck in finding answers and quickly.

01-13-2013, 07:40 PM
every one has offerd great advice.....
i will not confuse you with more.

but i will offer you a hug


it can get downheartenning to try to find a good doctor who will listen.
but hang in there.

01-13-2013, 07:58 PM
So sorry you have gone through so much. We are so glad that you found us. We are glad to be here for you but please remember that none of us are doctors so any changes to diet should be discussed with your Doctors because they understand your individual situation.

01-13-2013, 08:49 PM
So sorry you have gone through so much. We are so glad that you found us. We are glad to be here for you but please remember that none of us are doctors so any changes to diet should be discussed with your Doctors because they understand your individual situation.

And if it is a possible dietary issue if you implement changes on your own due to recommendations of friends,family or reading and then specific testing to rule out/diagnose an illness needs to be done following a diet that restricts certain tbings can cause an inaccurate outcome unless the dr you are seeing is aware you are doing it and oks or recommends it to you.

Just like people who have gluten issues and decide to go gluten free before having testing done-if you do this is will not be possible to accurately diagnose.To have the gluten test(I am just using this as example)you must NOT be on a gluten free diet at the time the test is done.

Just keeping a symptom/diet diary allows for observation that if you ate a certain thing three times a week and experienced certain symptoms or worsening after the meal that there is the potential there for something you ate to be aggravating or causing the issue.I would keep a full day diary including activities,meals,stresses that were unusual for your day to day routine,symptoms(joint issues,headaches things out of the normal, etc) as that will paint a much broader picture.

Again hope you get some answers and treatment soon.I would be frustrated too in your situation and not knowing where to turn doesnt help anything.