Thank you for this site!

[Elbeasta]

Happy Spring!
This fine weather sure takes my mind of things.

My name's Lisa, and I just found the forum yesterday. It's been quite a comfort to me - all the stories and information about meds, treatments, diet - and I'm especially impressed with the consistent support from the moderators and the community. This is important work, and you make the world a good deal warmer and brighter for us. So thank you.

Here's the story so far...
I'm currently undiagnosed, but my primary doctor thinks my symptoms - bleeding, bloating, cramps, weight loss, fatigue - are IBD. Unfortunately, the earliest I can see a GI specialist is early May.

When I started looking up IBD, so many things in my life made sense (insofar as eating anything making you horribly sick makes sense...).

When I was 16 (1984 or 85), I was rushed to the hospital when I passed out in the school cafeteria. When I came to, I kept vomiting, and also had diarrhea. I has hospitalized for a week, and they discharged me with the lamest of diagnoses: "fat intolerance". Just don't eat fat, they said.

And I've had episodes like that ever since - not hospitalization, but I guess these would have been what you call "flare ups". Bouts of painful diarrhea and constipation when I was in a touring theater troupe in my 20s, more of the same when I traveled to Europe and Asia ... I didn't have any insurance, so the library books offered this helpful info on IBS: "Patients should consider taking up a hobby."

In 2000, I learned that I'm hypoglycemic and lactose intolerant. Of course, no tests, but good old "I can tell just by looking at you" diagnoses.

A year or 2 ago I went to a GI specialist, to see if it might be celiac. "I can tell just by looking at you that it's IBS." Manage your stress, take a probiotic, and thanks for the $250.

I tried a whole grain diet for a few years - whoo! what a ride. I was in denial big time about all the bleeding.

I went to a naturopath, who advised omitting corn and corn derivatives. This was a huge step in the right direction! Then last year my friends turned me on to the paleo diet. I felt healthy for the first time in years! But then I stopped being able to eat red meat. or pork. or processed foods. or nuts. or seeds. or many fruits... tough time sleeping. So I found a new primary doctor, got a blood test for celiac that turned up negative, and now I'm waiting ... May can't come soon enough!

Here are a few burning questions:
Should I try to get an earlier appointment?
Should I cancel my vacation in April? (taking my nephew to hawaii - scared about the long flight and food-traveling woes)
How do you "come out" to your friends/family without stressing them out?
How do you deal with hurtful/ignorant comments? (you wouldn't have this if you managed your stress. you have this because of your crazy diet. just think positive and it will get better. etc.)
Tell me more about B12! I just checked my multi, is 25 mcg okay?

Here are the things that make me feel better:
exercise - yoga, running, working with a trainer
gardening
games
sculpting/drawing/painting/writing
hugs

Okay, thanks for your time and support - I'm excited about the diet advice and happy to see such a strong community!
--Lisa

"That which makes us vulnerable makes us beautiful."

 

[David]

Hi Lisa!

A most hearty of welcomes to you

I'm so sorry you've been suffering so long. And good lord do I hate hearing of people diagnosed with IBS "by looking at you". It infuriates me.

Do you have IBD? I don't know, but some of your symptoms fit. It could of course be a myriad of other things. What I do know is that they need to do more than stare at you, it's time you got some real testing done. I'm glad you have that GI appointment but yes, that's quite awhile off. If it's not a problem to move up the appointment I think that's always a good idea. Do you need to cancel your trip? If you're going to be miserable the whole time, then it's something to think about. Otherwise we have lot of traveling with IBD threads around that might offer some good ideas to make your travel easier.

In case you haven't seen it yet, we have an undiagnosed club forum. There's plenty of people there who feel your pain and know what you're going through.

Educating yourself about IBD will likely help "coming out" be a little easier. If you can answer questions with authority then that removes the unknown quantity which scares so many.

As for vitamin B12... it is one of the vitamins that people with Crohn's Disease are commonly deficient in. Some people without IBD are occasionally deficient or low normal such as vegans, people on acid reducing medications, the elderly, etc. However, it's epidemic in the Crohn's populations. I'm not a fan of taking B12 (or any vitamin for that matter) blindly. I feel that levels should be tested and if you're deficient due to a means that cannot be corrected by diet alone, then you supplement properly. If you had Crohn's Disease and were deficient 25mcg would be nowhere near enough. Oral doses would have to be a minimum of 1000mcg but more likely you'd be looking at injections. But again, please don't do this blindly, it can do more harm than good in my opinion.

Again, welcome I'm glad you're here and pray they are able to get to the root of your problem soon!

 

[CLynn]

Hi Lisa! Glad to have you here! I was diagnosed in 1988, while in college. And while I don't even come CLOSE to knowing it all, as computers and this forum weren't available to me then, 24 years have taught me a few things. As far as an earlier appt, I would say, if they can get you in to see a GI, go for it. The sooner you start getting answers, the better you feel. On the vacation in April, again, depends on how you feel and if you can control "D" and/or pain.
As far as telling people, I was just honest, pulled no punches, with friends or family. But, I made sure to tell them it was a chronic disease, not a death sentence. Most handled it well, although we all run into those rude/mean/inappropriate people from time to time. M defense is usually kind (sometimes not so kind) sarcasm, lol!
Now, as far as B-12, have your doc check your levels (blood test). Usually if there is ileum involvement, you are not absorbing the B-12 as you should. Hope this helps somewhat!

 

[Angrybird]

Hi Lisa and welcome to the forum :bigwave: I am really pleased you have joined us and have already found the info here helpful I would say your current appt date is quite a way off so if there is anyway it can be brought forward definetly pursue this. Do check out the above mentioned forum and get those B12 levels checked. I hope you get the answers you need soon hun, keep us updated on how you are doing.

xx

 

[Elbeasta]

Thanks very much for your warm welcomes, David, CLynn, and Angrybird! I will call again to see if an earlier appointment is available, and I'll be sure to ask about b-12 levels.
David, thanks for the tip on the travel threads and the undiagnosed group. I got a lot of good info on one of the travel threads, so I think, at this point, I will do my best to go.
The undiagnosed club forum looks great! Quite enjoyed the spoons essay, and shared it with my sister.
CLynn, yes, I think a little sarcasm is brewing. I just don't want it to turn into a snark-fest...
It's quite affirming, after years of neglect and dismissive replies, to hear from each of you that these are real symptoms that go with a real condition. I'm pretty humbled now, to think of all the times I haven't taken the ailments of my loved ones seriously...
Funny, since January I've been going through this re-awakening, with a focus on humility and vulnerability, and today those two qualities are central to my experience.
Thanks again - I woke up feeling scared and alone, and now I'm actually excited about the future.
--Lisa

 

[Elbeasta]

Hi Astra,
thanks! Those comebacks might not work with in-laws, but I will keep them in mind for co-workers...
(christ-on-a-bike is a new one for me!)
Thanks for the support,
--Lisa

 

[Astra]

ha ha yes you'll get to know all the Astra-isms in time!
David's still scratching his head in confusion!

Oh aye, be nice to the in laws, save the sarky stuff for the ignorant!
xxx

 

[KellyMom]

Hi Lisa! Welcome. I just joined this March as well, just got Dx a few weeks ago and also had to wait over a year to finally get testing and Dr appts. It stinks I am in Boston, not too far from you. I don't have much info. to share yet, but I will say this forum has been completely AWESOME thus far. I am amazed at the quick responses and the supportive atmosphere. Again, welcome and I hope you get some answers soon!

 

[Elbeasta]

Hi Kelly,
Thanks for the welcome, Neighbor! Guh. Waiting a year to see a GI. This is what I find so frustrating about our healthcare system (wait, that's wrong - there's nothing in our healthcare that I DON'T find frustrating!) Anyway, I hope you like your GI and that you're on the mend.
The advice and support on this site really turned my week around!! If this keeps up, I think I can still go on vacation and have a good time.
I can't thank everyone enough.
--Lisa

 

[Sybil Vane]

Welcome to the forum, but I'm sorry about what brought you here! I was given the same IBS diagnosis when I was 24 but I had a good GI who wanted to do a colonoscopy to make sure. I wimped out and regret it because I developed strictures from constantly healing up and ulcerating again. You definitely need a colonoscopy--they really can't proclaim IBS without it. (Also, as someone mentioned, you don't bleed when you have IBS, although IBS symptoms can be pretty hideous.)

 

[Elbeasta]

Hi Sybil - thanks for the welcome!
Yikes - strictures. That's what I'm afraid of. Are you on the mend now?
I lovelovelove the cats picture! my cats have kept me company in the bathroom many a time.

 

[Sybil Vane]

I wish I could say I was on the mend, but no, not yet. I haven't found my wonder drug. I started Humira and I'm hoping it will be my ticket, but I have a severe case and surgeries will always be in my future.

I love cats! Sometimes when I'm sick, my cat Mittens (in the picture) will cuddle with me, but I know it's only because I have a fever. I like to think she loves me, but there's something about the indifference of cats that always makes you want to chase them. Dogs love you too easily.

Let us know how everything turns out. I'm keeping my fingers crossed that you get some answers soon!

 

[PVail]

HI Lisa

IBS means I dont know ! I had this carry on for the last three years. Your gonna have to stick to your guns and see a GI . Do join in the UNdiagnosed club, There are many people in a similar position and it will prove to be a great wealth of information and just a good place to chat about anything. Its a long road but the help an advice here has really helped me cope with the reallity of bowel disease. Dont give up go see the doctor and insist on futher testing.
Going on vacation is all about being prepared. think about what you eat and drink and take extra clothes in case ou may need them. Take enough medication. Plans your outings so if any thing does happen you are prepared. Doing this will give you back confidence and some control over the IB? thing. I believe its really important to try and get some contol so we can get some sort of life while waiting for health care.
Peter

 

[Elbeasta]

Hi Peter,
Thanks for the encouragement - about getting tests, and also about vacation. Extra clothes is a great idea! This year, I started to bring my own food everywhere I go, and that's been incredibly helpful.
How frustrating to go through 3 years of tests with nothing conclusive! Hope the colitis diagnosis helps to get things on track for you now.
thanks again - everyone's support and advice has me feeling so much more like myself today.
--Lisa