See I'm Not Crazy

[Becca]

Hello,
I am 33, grew up with JRA, have a daughter with JRA & uveitis. Gallstones run in my family, and I've blamed the constipation, bloat, cramping, and vicious diareah on gallstones. About 5 years ago they gave me an ultrasound and told me I didin't have gallstones. So I want back to assuming I would have these miserable attacks and just be forced to cope with them.

Three weeks ago on Sunday, after a lobster & clam bake, I got sick. Severe cramps, bloat diareah, pain after I ate anything or even took a sip of water, and I was exhausted. I figured it was food poisoning (though nobody else was sick). The next weekend was so much worse I nearly went to the hospital. But by Monday, I could drink and eat without pain and thought I was over it. I coped for another week, still with terrible non-stop diareah. On the Sunday that marked three weeks in, I got sicker.

At 4am I was really ill. The cramps felt like labor pains. I went to the ER at 4pm. They gave me pain meds, did blood work and ruled out gallbladder (again) and did a CT and ruled out appendacitis. They gave me iv antibiotics (cipro), and immodium and said my white blood cell count was 25 (no fever) and I had a lot of inflammation. They said I have colitis, and said I needed to see a GI doc asap, but of course the primary care doc wants to see me first (though I've met him once in ten years) and of course he has no appointments. So I have to see a nurse practicioner today at 3:45.

I feel pooped, literally and figuratively. My head is killing me, and I'm worried about what having colitis means. I have degenerative disk, and had surgery last summer...it's ruined a lot of the good stuff in my life... I just want to feel better, lol!

Warm regards,
Becca

 

[Crohn's 35]

:ybiggrin: Welcome to the forum! Glad you are here, great help and info here. I have had gallstones one attack thought it was a crohns attack but it wasnt. Got that sucker taken out. I have had all the pains you have had sounds like an obstruction. Having said that, Crohns and Colitis are very hard to diagnose. Colonoscopies are a great way to find them.

Once you get a diagnosis completed, there are lots of options, and hopefully get it under control. It is not a death sentence,but requires a lifestyle change.

Let us know what your doctor says and keep us updated ok? We are not doctors but we are here and we know your pain.

 

[Becca]

Thanks for the reply. The funny thing about what I'm reading here is that I'm familiar with the drugs thx to my daughter's exp. with uveitis. She was on pred, mtx, imuran, and finally cellcept.

Wouldn't the ER have seen an obstruction on the ct scan? I have only vomited once through this odessey, and I actually have been dx'e with mild acid reflux (after the fun drink this and let us tipsy doodle you test) so I thought I was pretty lucky (o:

The best part of this? Well, last summer with my diskectomy and hemi-laminectomy I lost 40lbs. I put 25 back on over the year, and I bet I've almost lost that. My kids broke my scale so I'm going by the fact that four weeks ago I couldn't get my thigh into my "skinny" jeans, and now I can button them up without muffin top. Woot for the skinny jeans. My upper ab area is really puffy tho....

Man, I feel absolutely unmotivated today. I need to go fill my scripts and don't even want to get dressed...

 

[mikeyarmo]

Welcome Becca to the forum.

I am sorry for the recent episode you have had to go through and I understand the lack of motivation/energy that comes from IBD health issues.

Hopefully this site will show you that you are not alone in your feelings and experiences and help make it a bit easier to cope with the uncertainty until you have seen all necessary doctors.

 

[DustyKat]

Hi Becca and welcome aboard!

Good to see you here. I can't add to the great advice Jett has already given. There are heaps of experienced and knowledgeable people here to give a helping hand. In our case, Roo's obstruction wasn't identified with CT scan, so it is possible it could have been missed if there is one there.

Take care,
Dusty

 

[Becca]

Well I just got back from the nurse practitioner. I had another blood test run, and my white blood cell count yesterday was 24, and now it's 8. Perhaps thanks to the iv Cipro antibiotic.

The NP thinks I have IBS which may have caused colitis. There was blood in the stool but the tests are not finished yet.

I don't think this is IBS. Last summer I was dx'd with degenerative disk, lost a ton of weight fast, had my joint pain going crazy, got shingles...

The GI doc is supposed to call me within two weeks. Meanwhile, I'm to take cipro, immodium, and gatoraid (my salt and potassium levels are low.) No dairy, and I can eat rice, chicken broth and bananas.

Warm regards,
Becca

 

[Dexky]

Hi Becca and welcome!! I'm curious what meds you've been on over the years for the jra as I know many of the same meds are used to treat crohn's/colitis as well. You've had it rough and to have your daughter suffer from jra as well, I know that is very tough on you as well. I wish you both the best!!

 

[Nancy Lee]

Hello Becca!

Just popped in to say a quick welcome to the Forum.
I hope you get all your tests run and the doctors
figure out what's going on so they can get you on the right treatment.

Welcome again,
Healing Hugs~Nancy

 

[Astra]

Hi Becca
and welcome

I'm so sorry you're going thro this, and I had to fight for a dx too!
You've NOT GOT IBS!!!!!
and to prove it, I'm sending you a table of differences, eg, you don't get blood in stools with IBS, you don't have weight loss or eye infections with IBS and so on!

http://ibdcrohns.about.com/cs/ibs/a/diffibsibd.htm

I've always questioned the existence of IBS, and now believe it does exist, but I now know the differences and I'm sad that I wasted 15 years, getting more and more scarring from inflammation, I hope you don't!
glad you found us, lots of support here for you
lotsa luv
Joan xxx

 

[Entchen]

Hi, and welcome to the forum! Looking forward to seeing you around.

 

[Becca]

hi! ty for your responses. I've been so ill. The np I saw told me she informed my doc I probably have ovarian cysts, when she consulted with him before my appt. I have no idea why considering i've never had problems of the sort. Felt pretty sunk when she told me that.

I can eat very little. Rice, chicken, or I hurt. Then the big D comes back. I also have tender swollen bumps under my tongue, on the jaw, maybe lymph nodes? My right side under the ribs burns. From cipro?

I go to the gi doc Tues... today... expecting to be blown off. I was preparing to return to college in fall... can't do that in this condition.


Wish me luck.
Rebecca

 

[DustyKat]

Oh Becca, sorry to hear you are going through this.

Good luck with the appointment today and I so hope you get some much needed answers...............

:goodluck::goodluck::goodluck::goodluck::goodluck::goodluck:


:hang:
Dusty

 

[Keona]

Welcome to the forum Becca
Nope, you're not crazy !!
Glad you're here - there are a lot of supportive people.
Wendy

 

[Astra]

Hiya Becca

hang on in there hun, you're not crazy, you're ill!
be a good idea to ask for a referral to gynae, it sounds like endometriosis, I have lots of posts/threads on this condition, I suffered with it for donkey's years, and it exacerbated my symptoms, endos are cells that form on other organs lke intestines and bladder, causing scar tissue, mine were all over my bowels.
Persist and insist!!!
don't be fobbed off, ask to see gynae!
if you need any more info, PM me
good luck
lotsa luv
Joan xxx

 

[Becca]

Hi All,
Well Astra you are right, the first thing the GINP said today was "you do NOT have IBS." Great. Cuz I've been eating a diet for IBS all week. It threw me through a loop. I ate an apple yesterday and was so sick I couldn't eat. My daughter brought me a piece of turkey lunch meat and made me eat that in the evening, lol. That was all I could stand, other than sipping gator aid.

TY again for the suggestions and responses. It's so funny, since I was in my late 20's, I've had "issues" lol nobody thought it was for real, because sometimes it was BAD and sometimes it was fine.

At the GINP today, she asked me for "my story" and I explained what happens, how when I have a flare up of my "problems" it about kills me. She had my chart and was flipping through, and said "it almost did kill you this time. You were really really sick when you got to the ER. Did they tell you that?" ummm no... she said I have ileitis? sp? and inflammation of the bowel, and fluid in my lower right abdomen (that may be why they thought ovarian cysts, but again, NO period or pre-period pain, mild mild discomfort rarely, 3 easy pregnancies and deliveries...) my white blood cell count was 25. I was dehydrated, had no salt or potassium in me... I really thought it was just a bug. I didn't think it was THAT bad.

When I have the "problems" I usually go on a water/liquid diet for a couple of days. Otherwise I'm a total mess. I can eat ok when I'm not in a mess time... but other times, just the smell kills me. I've thought this was gallbladder for YEARS.

So, then she talks about the meds I've been on... I tell her that the week before I was ill I did a course of pred for poison ivy that I was CERTAIN wasn't poison ivy (I grew up country. I know my poison plants, and the rashes from all of them.) I got a big patch on my face by my mouth and my eyes were killing me and inflamed. Then on my arm and hand. It looked like a severe grease burn. it burned, but didn't itch exactly like poison ivy. So the first week of pred failed, I had another week of misery and more spots, then another week of pred and pred cream, which nailed it.

Also, last summer I was so sick, I actually couldn't work full time, then lost my job (they thought I was texting in the bathroom. HAHAHAHAHHA I FREAKIN' WISH. I lost 20lbs in a week and a half and another 20 in three more weeks, was dxed with shingles across my entire rear scalp, spots of which persisted down my scalp, neck and face for about 8m (she said it NEVER happens that way.) I then suddenly burst a disk, and had a laminectomy for spinal stenosis, and my sciatic is really damaged, I don't feel my foot or some of my leg or thigh. She asked if anyone had told me about "ankly something spondinosis"???

Soooooo, she's pretty certain it's crohns and I have to go for a colonoscopy Thurs. Part of me wants to cry because maybe it can finally stop and because I am NOT being dramatic. People always said they thought it was drama when I would get sick.

Part of me is so pissed. I'm freaking 33 years old. I've been raising my family since 18. My kids are 11 13 15. I'm in the home run time here. I thought I could finally go to college and maybe MAYBE do something for ME. How selfish is that, lol. I think this is God's way of telling me to just stuff it. Last time I was in college, I had a car wreck the first semester (while 27wks pregnant) and had a non-walking cast, and the second semester my house burned down. Now this. Ha, the best part? I wanted to go to school and work toward a marriage and family C degree. MY MFC quit and moved home with her parents because her crohns disease got out of control and she couldn't handle it. I LOVED her. Abeela if you're out there, I LOVE ya. I pray for you regularly.

I'm so freakin' stressed out. So, since I'm a "do-er" my husbands term, lol, I bought paint and I'm going to re-decorate my "piano" room all night. There is something about a fresh coat of paint that just cleans everything up and freshens. Plus you can keep going back to check out the cleanness and the amazing job you did. lol. Also, I was building a pergola and I'm too sick to dig another hole or mix the cement.

Well, wish me luck Thurs. And I'm sorry for the rant. I don't want to scare my family. My daughter is finally in remission from uveitis and it was a LOOONG 8 years. We even did the 7hr drive to Boston to Dr. Foster... The world's leading specialist... weekly for a while. They don't need to worry about this right now.

Have a great night. Hope everyone is enjoying summer!
Becca

 

[Astra]

Hiya Becca

WOW WOW
Ok, first things first, RELAX!!!!
If you are a Crohnie (TG it's not IBS) then at least you know what you're gonna be dealing with, at last an answer, at last some appropriate meds, everything will now make sense, the mouth ulcers, the rash, the spondylosis etc!!
this is cos your immune system is in a tailspin!
Oh, and by the way, I went back to college at aged 33, still hadn't got a dx tho, got a HND and now have a crackin job!
it's not the end of the world bein a Crohnie, once you are sorted with meds etc, you life will start again!
I wish you all the luck in the world and let us know how you get on on Thursday!
Joan xxxx

 

[Becca]

Hi all,
I'm touching back in because I just spent three nights in the hospital. I had ab pain and bloody stool... but it was Thanksgiving so I waited. Planned on going to the doc Monday. But my mom fell and broke her hip... so I was AT the hospital, getting her ice and started to pass out. Ended up admitted. My white blood cell count was 4X higher than normal.

Soooo I'm home, after another CT scan, an ultrasound, and a ton of IV antibiotics and drugs... with a still not certain dx of Crohns.

This time, the pain in my side was unbearable. They have me on; metronidazole 500mg, a pred taper down, ciprofloxacin 500ml, omeprazole 40mg, and another drug the pharmacy doesn't have.

I came home to a messy house, kids doing nothing... I tried to do dishes this morning and about died. I'm feeling very depressed very quickly. I can't keep up and survive this.... I used to be a huge "doer" and now I just want to lay down and not have to move because it hurts. This bites.

Any advice is welcome.
Thanks,
Becca