New Member

[Shihua]

Hi everyone,
This is my first post here. I've been reading around quite a bit and everyone seems very nice and well informed.

I wanted to share my experience and story with everybody and hopefully get some advice. My name is Alyssa, I'm 25 and from Orange County Ca. My digestion issues seemed to have always been present in my life. As far back as I can remember, I've always had some sort of problem. Having all of these issues turned out to be a problem in itself because I honestly didn't think my indigestion issues were anything to worry about because they'be always been there. Looking back on it, it was pretty silly of me not to worry about it.

Three years ago, my grandfather was diagnosised with Celiac Disease and Crohn's disease. Since celiac disease is genetic. My mother decided we should all have the blood test. Of course my mother and I turned out to be positive. I'm sure most of you are aware of Celiac disease, since it's another IBD. SO i won't bother to explain. It's at least nice, because once you stop eating gluten (the protein in wheat, barley, and rye), then you are basically free of most symptoms. The symptoms are varied, but usually it's lots of indigestion problems and other problems resulting from mal absorption. I had alot of indigestion, fatigue, muscle aches, headaches, etc.... So after I eliminated gluten from my diet, it was wonderful! Things were much better.

But then a year later. My stomach problems came back, and this time much worse. Not only that but blood in my stool. Which I used to have blood in my stool all during my teenage years and early 20s, but it was infrequent. Then after the celiac diagnosis, I thought it would go away. With the bloody stool I have horrific abdominal cramping(everybody here I'm sure knows about that fun subject). It was awful. And the worst part, I had no insurance!!! Thankfully early this year (and two years after it started!) I finally got my insurance. I made an appointment so fast! After my trip to the GI and a colonoscopy/endoscopy, it was a little disappointing. The dr. was unsure. He said there were ulcers in my rectum and some in the large intestine. But he was unsure, he was thinking it might be ulcerative colits or crohn's. The lab biopsy said that the inflammation was very deep into the layers of the intestine, so their diagnosis was crohn's. I believe it is crohn's because all of my symptoms match crohn's. Plus my grandfather has it too.

This is so frustrating. I am wondering if a second opinion is necessary. The GI also said we could do the camera test, where you swallow the camera ( i'm not sure what it's called sorry), but that those are often inconclusive.

My PCP think it's crohn's and she has me on presidone, ASCAL, and some suposatories. I've been on the ascal for 5 or 6 months and the presidone just recently. How long does take to feel better!? I know every body has different experiences with Crohn's, but I can't take this anymore! I've been in pain for almost 2 years straight. The ascal was helping when I first started taking it, but I feel like it's not working anymore. My pcp upped the dosage, so maybe that will help. I'm just nervous because my grandfather's stomach just hurts all the time! He's in a continuous flare up. Maybe it's just because he is older... I don't know. I can't even sit on a chair that is made of wood or metal. My rectum freaking hurts too much! Ok I'm sorry about the complaining.... I know there are people in this forum that have been going through this for way longer then I have, so I will stop now....

Anyways, does anyone have any suggestions ? I read a post about a pain management doctor? Is this a good route or should I get a new GI? Do you think I would need a referral to get a new GI or a pain management doctor?

Thanks for reading and any advice would be highly appreciated.

 

[Cara Fusinato]

HI fellow Californian! Can I come visit and go to Disneyland? Just kidding -- I'm from the foothills above Fresno.

I would first discuss this with my GI doc. If you get the sense that your doc is not taking the time or effort to work with you, then discuss it with your PCP and ask to see a second GI doc. Discuss frankly with your PCP your concerns, your pains, and request the type of GI doc you wish personality-wise as well as experience-wise. You have a vast pool of docs to draw from in the LA basin. Heck, ask to be referred to Santa Barbara or UCLA or Cedar Sinai if you can. All of those are top notch and in your backyard (more or less).

You should have had some improvement by now. Perhaps a new GI doc will suggest something different (and don't just jump into surgery, too many of them are too into that).

 

[Kev]

Hey Shihua, welcome to the forum. If you'd feel more comfortable seeking a second opinion, perhaps even 'shopping' for a GI you'd feel better about, and you can afford it, then that's perhaps the next step. If the biopsy says it's Crohns, then it's both good/bad news. My biopsies were inconclusive, they still can't say for sure whether it's one or the other... which complicates my treatment to some degree, but it also confuses the decison making process... should I have my colon taken out, or not???
Yours says crohns, its' bad news, but the good news is that you know for sure, OK? As for the camera thing, it might be good idea to see what's happening/not in the upper reaches of the digestive tract... duodenum, ileum, etc.. wouldn't hurt to know if the colon is the only area affected. Better to know what you;re facing, and if this is just the beginning. And, although heridity plays a part, your illness has little to do with your grandfathers disease. These diseases affect everyone differently, and it seems to have skipped a generation, so his suffering from it may vary from yours dramatically. Afterall, has he turned to this website for help yet??

Anyway, one last point. don't worry about complaining. It's a 'right' of every one who becomes a member of this site... you are paying your dues, membership has it's privileges. Relax, vent, rage, joke, whatever. And if you can, help someone else in turn. Perform a random act of kindness. you'll feel better for it, believe me

 

[Shihua]

Hey everyone!

Thanks you for responding and for the advice. I think I am going to look for a new GI. It's just hard because the GI shares space with my PCP. And they are good friends. I feel weird about asking her to recommend me to someone else. But if she's professional then she shouldn't have a problem with it.

And as long as my insurance covers it, then I'm having the camera procedure too. My doctor said it's not likely that they see anything, but there's a chance that they might.

Thanks again. I'll keep you updated with my progress!

 

[My Butt Hurts]

Hi! Welcome to the forum. You'll find a lot of good info here, and it's a great place to vent.
I have Crohn's, and as you can see from my screen name - my butt hurts too! I have been using a cream called Calmoseptine. It's over the counter. It's a zinc based cream, but it has menthol in it, so it instantly cools from that wiping/diarreah/skin tag/anything else pain. It's thicker than those hemmerhoid creams. There's also a spray called Dermoplast. They gave it to me after giving birth, and having an epesiotomy. It's briefly numbing, and that's over the counter too. Lidocaine is a cream that numbs, but you need a prescription for it.

Unfortunately, as far as medications go, a lot of it is trial and error. (It'll help once you're truly diagnosed though.) Prednizone works for some and not for others. It gives some people horrible side effects, and gave me none. Sulfasalazine worked for me pretty well for several years, then just quit.

Good luck!