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Had my GI appt. Feeling down today

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Crohn's Disease
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Posted 6/7/2012 8:53 PM (GMT 0)
A lot of you probably know my story, but for those that don't....I was very sick from Sept.-March of last year with a Crohn's flare resulting in a partial obstruction, gastroparesis and c.difficile. I was in the hospital twice over the winter and it was a long road back to health, but I finally got better and believed I was in remission. I had my GI visit today, and I told him I was ok, but having "whiny" issues. Well, my GI is one of the kindest docs on the planet, so he said he wanted to hear everything that was bothering me, even it if was minor. So I told him about my new bouts of hip/back pain, fatigue, occasional nights where I poop all night, occasional pain in my ileum, increased heartburn, etc. But, because I HATE to be sick, I added comments like, "it's probably just IBS, or I am 53...maybe it's just a touch of arthritis, or maybe it's hormones, etc.
My doc thinks maybe it's Crohn's arthritis,(which is new for me) and I'm not completely out of my flare. We aren't changing any of my meds or doing anything different, but just watching and waiting for awhile. My last lab work looked good, but he said that doesn't always mean everything is fine. So, I'm not that bad off, and functioning ok...going to work, etc. I just felt sad anyway. I guess I wanted to perceive that I was in remission, even though when I really got talking, I realized things aren't so great. So there's really nothing all that wrong...I am just tired of having a chronic illness....I just want to wake up one day and have it all go away, Just venting, I guess.
Posted 6/7/2012 9:40 PM (GMT 0)
We all have our denial skills in tip-top shape, don't we? I have experienced exactly what you describe and sometimes saying it all outloud is enough to catch yourself trying to believe something that is just not going to be true. Your DR gets a lot of credit for being a sounding board for you and for gently reminding you that what you are living with is not really what you want.

I'm sorry that you aren't in remission and I want you to be feeling all the way better too. And it is possible that some of what you're experiencing IS due to other issues. But the waking up at night having to poo? Pain in the ileum? fatigue and achiness? sounds unlikely to be anything other than our friend Crohn's.

If it's joint pain your having I'd recommend you get a rheumy on the team. My experience, at least, is that the rheumy really helped me and my DR get focused on solving the right problem. As you know sulfazine is taking care of my joint pain and I think it's a good choice if you can tolerate it.

{{{{{HUGS}}}}}

and have you tried going gluten free? I don't remember.
Posted 6/7/2012 9:49 PM (GMT 0)
Gumby, you have every right to vent when you want to, and I can't think of a better place to do but here where everyone understands and goes through similar feelings.  I am also sorry to hear that you are sad that you are not in remission, it could still happen.  Sometimes just venting to others on this site can be cathardic.

At 61, I too am experiencing Crohn's related arthritis, but I try to keep positive by getting through each day as it comes.

It is also great that you have a doctor who sounds very thorough and you are comfortable with. 

So go ahead and vent, you have every right to, you are dealing with a chronic disease and remember we all have bad days and feel like you do.

Hope things get better for you. 

Posted 6/7/2012 10:09 PM (GMT 0)
Thanks for your support! Kazbern, I did try gluten free but it was right as I was just getting better, and I only lasted a couple of weeks...I didn't notice any difference, and I didn't get worse when I added the gluten back in. I might not have given it enough time. When I'm ready, I might try it again sometime. Our plan is to wait a few months, but if I'm not progressing, I think a rheumatologist makes sense. Can my GI prescribe the sulfazine, or do I need a rheumatologist for that? I have a great GI and internist, but it took me awhile to find them. I hate the thought of trying to dig up another good doc...they seem to be hard to find!

My best coping skill is to focus away from the pain and keep busy and active, but for me sometimes, that also leads to denial. It wasn't until I started listing all my symptoms that I realized I wasn't doing that well. Thanks for your help
Posted 6/8/2012 12:00 AM (GMT 0)
Gumby, I know that this might seem a little trivial to you but my feelings are hurt.  I wrote a supportive reply to you right after Kazbern did and you completely ignorned me and thanked her for her support and not mine.

You make me feel that I might as well just ignore anything you post because if I reply, it doesn't matter to you what I write, I don't count.

My skin is not as thick as some other people's and sometimes I become very sensitive, and this is one of those times.

 

Posted 6/8/2012 1:11 AM (GMT 0)
Gumby- Big hug to you! I understand how you feel. It seems as though when it rains it pours. I am finally in a place where I am taking the blows as they come and trying not to let it get to me too much. It never helps me so I am doing my best to try to look at the bright side, when there is one, LOL

Here is to wishing you healing thoughts and prayers for a turn around in symptoms and a nice remission!!
Posted 6/8/2012 2:07 AM (GMT 0)
gumby, your GI should be able to prescribe sulfazine, no problem.

Cleanfreak, awww, don't sweat the small stuff. I'm sure Gumby appreciates your support.
Posted 6/8/2012 11:56 AM (GMT 0)
Cleanfreak, I'm sooo sorry. My intent was to thank both of you for your support, and then to go on and ask Kazbern specific questions. In re-reading my post, I can see how you felt hurt! Please forgive me. I was down and not tracking well.
Posted 6/8/2012 11:59 AM (GMT 0)
BTW pmedic, thanks for your support too!
Posted 6/13/2012 7:56 AM (GMT 0)
Aww :(( Hugs!! It is okay!! You are loved & are such a help even when your sick! I haven't been on the forum & actually switched to another one with much more support & people wh are very knowledgeable but I had to post for you. I'm so sorry to hear the 'remission' was short lived.

On my end, the 3 year flare has gotten outrageous. I've been in the hospital for a week on 60 mg of IV Prednisone(still in the hospital) & will be starting Cimzia Friday. It's my last effort I think. I'm trying to think positive but I've really been a mess. I've been on Prednisone since October & just got off in April but I'm back to square one. Ive been on antibiotics to clear up what looks like a fistula. CT Friday showed a lot of fluid in my pelvic cavity. Craziness!! Dont even bother looking at my med signature, it is too outdated Hahaha. QMy arthritis is being crazier also. I wonder if it's the seson changes. My doctors want me to try some physical therapy. All of this at 15 is hard & my Sweet 16 is in weeks!! For someone your age, the news of returning disease is just as devastating.

So, are you going to look into other medications? It seems like your current medications aren't cutting it. I'm glad your GI is so supportive. Keep me updated! Please, take care of yourself. Thank you for everything you have helped me with!! :-)
Posted 6/13/2012 10:09 PM (GMT 0)
Hi Keeping faith,
It is so nice to hear from you and thank you for your kind words. I am sorry YOU are having such a hard time!!!! Were you able to finish the school year? I know you like your docs, and hopefully the Cizmia will be the magic med that gets you well. You are very brave and I wish I knew what to say that would get you better!!! I guess you just have to try to get some Zen, and enjoy what moments you can in the midst of all of this.

I'm actually doing ok. I want to wait this out before changing my meds. I've gone back to a safer, blander diet, and my husband has been massaging my lower back every night and it seems to be helping. My GI has me on a short leash, so we won't let things go too long without intervening. Thanks so much for responding and keep in touch. We all care about you here!!!! Happy almost Sweet 16:)
Posted 6/13/2012 10:23 PM (GMT 0)
No problem!! I was able to finish out the school year & passed in my honors classes!!! My lowest average for the year was a low C so I can accept that!

I will stay in touch and hopefully will be a lot more active in the forum once my medications are all figured out! I think of you often & thanks for always being here for me!
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