help please! (a rant about my health)

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ocdsgirl

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Okay, this might be a long winded post. I’m wondering if anyone else has any of these problems, but I’m not sure where I should have posted this.
I’ve always had skin and intestinal-type issues ( which seem to run in my family along with autoimmune disorders), but about 8 years ago, I started having IBS-type symptoms. The doctors kept telling me to take vitamins, exercise more, eat more whole grains and fiber. Eventually, there was bleeding when I would go to the bathroom, and I was diagnosed with ulcreative colitis. My family doctor won’t have anything to do with it, but I haven’t been impressed with the GI doctor’s I’ve been to. My colitis hasn’t gotten as severe as some other folks I’ve heard about, but it has never gone into remission. Since the day the symptoms started, they’ve never gone away.
Okay, on the other side, I also have acne issues, sinus issues, migranes, anxiety issues that I take Prozac for, I have cavities almost every time I go to the dentist. I have these weird blistery bumps that I get on my hands, toes, knees, arms (not severe though). Now I keep getting swollen lips. I was crying this morning because we had all these things planned today, but once again I woke up looking like a freak. It looks like someone punched me in the lip. I feel like a hypochondriac. I’ve had cat scans, biopsies, blood tests, blah, blah, blah. Sorry, I know I sound like a whiner. I’ll stop now.
Does anyone have ay of this? Could it be food related? I think it is, but my GI doesn’t agree.
 
Hey there, sorry for all the things you are going through! 😦

I would say get a second opinion…find another doctor and get his take on the situation. Prayers for you that you feel better. :gopray:
 
Hail Mary,
Full of Grace,
The Lord is with thee.
Blessed art thou among women,
and blessed is the fruit
of thy womb, Jesus.
Holy Mary,
Mother of God,
pray for us sinners now,
and at the hour of our death.
Amen
 
You will be in my prayers, ocdsgirl…I also sent you a pm, with some helpful info that you might want to try.
 
Sometimes I get a little whiny about it and I chose you guys instead of my husband for a change, but I know there are so many people that have much bigger issues. Thank you for the prayers everybody, and the advice whatevergirl!
 
Wow… Ocdgirl, your post could have been written by my brother!

I’ll tell you about him.

When he was about 17, he started getting the intestinal problems you are talking about and had blood in his stool etc… The family physician diagnosed him with ulcerative colitis. I don’t believe he took any medication for this but he had to change his diet a bit. He also had really bad acne from age 14 and up. He was on acutane for awhile.

At age 18 to 19, when he was in university, he developed a panic disorder, and severe anxiety to the point where he would call the paramedics to take him to the hospital because he thought he was going to die. So now he was dealing with three medical issues all at once.

Around age 21, he had parts of his colon removed because he was having so many problems with his colitis. They also said that it would decrease his chances of getting cancer in the region. He has an ostomy now.

He is 29 years old right now and his biggest problem is the anxiety. The colitis is gone but he has to deal with the ostomy which is usually not a problem for him. The anxiety has a bit of an OCD element to it as well and I have often wondered if it came from having the ulcerative colitis? I wonder if it is all related?

Colitis from whatever environmental and genetic factors, acne from stress and hormones, and the severe anxiety from having colitis. I always thought they were related.

One other problem he had was that he was taking some psychiatric pills for his anxiety (Xanax, … uhm and a bunch of others ) and they were not being absorbed into his system because he did not have a colon to help absorb properly so the medication wasn’t working. He was the one to suspect this, not the Dr.

Anyways, now it is mostly his anxiety that is the problem and he is unable to work ( he did finish university - a degree in astrophysics ) and has gone into a downwards spiral of drinking as a self medication.

He has researched vitamins to help him out. I am not sure of any correlation.

I am praying for you Ocdgirl, because I know just how hard things are for you and for your family. I really don’t think you sound like a hypochondriac. I think you should get as many books on anxiety and colitis and other issues you have the misfortune of dealing with and learn what you can.

God Bless
 
Have they done an endoscopy to check for Celiac disease? It’s known to not only give you the intestinal issues, but also depression and many other related mental “glitches.” They found mine on a whim when my doctor decided to check just “to be thorough”
 
I agree with SallyBranwyn, Celiac presents very similar to ulcerative colitis, but one thing that Celiac’s seems to present with is blisters on the hands and feet at it’s worst. It tends to be one of those “rule out everything else” disease.

If you haven’t been tested for this make an appointment, but in the meantime cut out wheat products and see if your symptoms get better. Look on line for celiac or gluten free diets for menu’s and recipes. Give them a try and see if it helps. This way you can go to the MD with more information and speed up the diagnosis process.
 
Actually DO NOT cut out wheat products until you are tested. If you stop eating gluten before your test, you blood test may come back as a false negative. Continue doing what you’re doing and have the doc test you TtG antibody count. That’s done with a simple blood test. Oddly, the blood test lab forms don’t even have that listed, so the doc has to write it on there! Sheesh!
Anyway, really do look into Celiac. It’s not some “fad diet” as many people seem to think…
 
Definitely celiac is something to look into. Get tested for it.
Actually DO NOT cut out wheat products until you are tested. If you stop eating gluten before your test, you blood test may come back as a false negative. Continue doing what you’re doing and have the doc test you TtG antibody count. That’s done with a simple blood test. Oddly, the blood test lab forms don’t even have that listed, so the doc has to write it on there! Sheesh!
Anyway, really do look into Celiac. It’s not some “fad diet” as many people seem to think…
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Agreed:thumbsup:

Also, I would suggest, due to the history of auto immune disorders in the family, seeing a GOOD highly recommended rheumatologist.
 
ocdsgirl said:
Sometimes I get a little whiny about it and I chose you guys instead of my husband for a change, but I know there are so many people that have much bigger issues. Thank you for the prayers everybody, and the advice whatevergirl!
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You’re quite welcome. That superfood is really outstanding. With all that our bodies face in this ever changing, polluted world we live in…and how basic foodsare even tampered with–it’s no wonder our immune systems are struggling. I highly recommend it…and I ordered it from “Head 2 Toe Fit,” and they were about $3 higher per jar than Dr Schultze’s site, but they are very friendly there. I hope it helps–you’ll have to let me know.🙂 Colitis and rheumatoid conditions are even addressed on one of the sites I saw, touting Dr Schultze’s Superfood–good stuff.
 
Actually, Sally is correct. 👍 Changing your diet may change the lab test results. I was just thinking of a friend who has Celiac, who had decided to take her daughter off of wheat products to see if it changed her behaviors (thinking the trait had been passed down) rather than to get her tested at this time.

As I was not acquainted with her when she was diagnosed I am not familiar with all the testing. I do know that her history sounds very similar to yours, and given what I remember studying it all those years ago…🤷
 
Sina said:
Wow… Ocdgirl, your post could have been written by my brother!

I’ll tell you about him.

God Bless
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Yes- that’s sounds a lot like me. The GI’s insist there is no relation to IBS and IBD (IBS-irritable bowel syndrome, IBD- inflammatory bowel disease), but I swear my symptoms early on without the ulcers would have been called simply IBS or lactose intolerant, but it just got worse over time. I started getting the blisters when I really started having severe IBS symptoms.
A lot of people have mentioned celiac to me. I try to avoid dairy, high carb stuff, and have gone off wheat for short periods of time (except for communion) so I don’t know if I were to go through the usual blood test if it would be accurate. And when you already have the colitis diagnosis, it’s hard to get them to look at anything else. It’s really hard to go through the whole gluten free thing, especially when so much other stuff bothers you, too. Does anyone here know that if you are in fact gluten intolerant or have celiac, is it really as strict as what it sounds like- I mean the whole cross contamination issue, not forgetting the whole communion thing? Maybe it’s a paranoia thing or something, but when I go to communion I swear I sneeze often and have a sore throat afterwords. Once I went through a lab called Enterolab (hope it’s not wrong to name the place) and tested positive for gluten intolerance, but I don’t know if I should trust that since it wasn’t actually through either of the GI’s or family doctor that I go to. The family doctor won’t deal with my intestinal issues, and I know the GI’s don’t agree with symptoms that I know are related to my bowel issue (the skin, anxiety, etc.). I just hate being such a pain in the you-know-what-- no pun intended!😛
Thanks so much for your help.
 
While you’re at it, get yourself tested for Crohn’s.
 
Liberanosamalo said:
While you’re at it, get yourself tested for Crohn’s.
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Yikes! That did cross my mind, too. And I’m due for a check up at the good ol’ GI. I also got a referral from my sister-in-law with her holistic doctor that she swears helped her daughter. My niece was losing her hair and had severe rashes, among other things. The doctor’s couldn’t do anything about it, but several months of her now doctor, and her hair looks lovely and she’s feeling a lot better!
Thanks!
 
I sent you a PM. In addition to my Dad, the stuff I mentioned has helped my mother-in-law. She’s had a lot of GI issues and saw doctors and specialists for a year and they couldn’t figure out what was wrong. God bless!
 
ocdsgirl said:
Does anyone here know that if you are in fact gluten intolerant or have celiac, is it really as strict as what it sounds like- I mean the whole cross contamination issue, not forgetting the whole communion thing?
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Yes, it really is as sensitive as you’ve heard. Some people are more sensitive (me) than others. However, that is true for people with full-blown Celiac Disease. Gluten Intolerance is like being Lactose Intolerant…you may get some nasty symptoms after eating gluten, but it won’t damage you long-term…so the cross contamination is much less of an issue with gluten intolerance.

I certainly wouldn’t let that stop anyone from getting a diagnosis, though! Let me tell you, without knowing what I had, I would still be suffering, losing weight, and taking too much sick time at work. So I can’t go out to eat at most restaurants, big deal! At least I can now have some semblance of a life again! Go get checked and suck it up…drink beer and eat pizza the night before just in case it’s your last “gluten-filled” supper. 😛
 
I’ll stop overloading you with info soon, I promise. But the related skin rash that often comes hand in hand with Celiac is called Dermatitis Herpitiformis. Google that and do a bit of self-diagnosis to see if that sounds like something you’ve experienced, just for added info to pass to your doctor.
 
What you need is a good second or third opinion. Do you live near a university hospital? If you’re anywhere near one, make yourself an appointment and GO. We can suggest all the diagnoses in the world here, but you won’t know until you find someone competent to examine you.

Ulcerative colitis, Crohn’s, and celiac disease can all have skin manifestations, and they can all be associated with (different) autoimmune disorders. Celiac disease can sometimes be diagnosed with a blood test. UC and Crohn’s can’t. All can be examined for with adequate biopsies but you can have early Celiac disease which may show up on a blood test but not on the biopsy.

There are great treatments for each of these disorders which should make it more manageable for you-- please, if your current docs aren’t helpful, find another GI specialist who will be. I’ll be praying for you.
 
sallybranwyn said:
I’ll stop overloading you with info soon, I promise. But the related skin rash that often comes hand in hand with Celiac is called Dermatitis Herpitiformis. Google that and do a bit of self-diagnosis to see if that sounds like something you’ve experienced, just for added info to pass to your doctor.
Click to expand...
I love the info, thanks!
At the end of April we went to Denver and I was bad about what I ate, and we got home on a Saturday, but I was too sick for mass on Sunday, then on Monday my little rash was all over my arms. The dermatologist did a quick biopsy and said it was probably DH, then I went in a couple weeks later and they said it was dermititis, but was looking better by then, so they told me to keep using the steroid cream they prescribed, and let them know if it gets worse. Do you know if that sounded like the right advice? The dermatologist has been more helpful than the GI.
Thanks, again!

Oh yes, thanks to Belle1o, too! I’m going to try to look into that as well.
 
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