I'm new here...

hi everyone... so...i guess i start with my whole deal. i'll try to keep it brief:

in 2005, i started feeling crummy, but chalked it up to heartburn. that never really went away and it gradually grew to terrible pains, finally coming to a head sometime in Fall of '05. i went to the ER, where i was admitted. pain meds, x-rays, blah blah blah...appendectomy. released a few days later, only to be back in the hospital about 3 weeks later. this went on for a while--hospital stays of about 4-5 days, followed by 3-4 weeks of things being sort of okay. i started seeing a GI, he was kind of a d*ck, didn't believe what i was telling him, accused me of being a pain pill addict (i was 25 and living in Baltimore; if it was drugs i'd wanted--i wouldn't have needed to go through the trouble of hospital stays...!)

anyhow, that GI reluctantly sort of Dx'd me with Crohn's, started me on all sorts of meds, as well as Remicade. after my second infusion, i developed a terrifying allergic reaction (throat closing up, etc., etc.) and was pulled from that.

the symptoms grew worse, i began developing all sorts of other issues, by this time i was out of work on disability, jacked up on prednisone and pretty miserable. during a visit with my GP, where i was complaining of persistant UTI symptoms, i submitted a urine sample that ended up looking like a cup of sludge. thankfully, my GP was my fairy godmother and referred me to a wonderful Urologist, who then referred me to an amazing GI. they started to sort me out: i had a fistula to my bladder, along with some pretty messed up guts. in april 2006, i had a resection, where about 7 inches of my small intestines were removed. things looked a bit better, but after a few months, i was feeling awful again and was back in the hospital. my GI and urologist met with my colorectal surgeon, and together they decided that i needed another resection--as the fistula never really got resolved and was back with a nasty vengeance. around this time, they also discovered that i had some ovarian cysts that weren't going away, so i was referred to a gynecological oncologist, for fear that i had some sort of crazy business going on in my lady parts. i also was seeing an infectious disease specialist, for some sort of VRE or C-Diff (my new best friend) that just wouldn't go away.

i was put on TPN for 6 weeks, and in November 2006, i had my second resection, as well as surgery on my bladder so as to remove the fistula completely. after a horrendous recovery (catheters are terrible and the thought of ever having one again is enough to make me want to hurl myself from a cliff or something -- kidding, sort of...), i finally healed and seemed to be in relative remission for the past several years.

...which brings me to today. just heard back from my GI that my recent MRE showed the disease is active again and i've been feeling pretty terrible for the past month or so...

so now i'm back and coming to terms with the fact that i DO still have crohn's (i think i'd convinced myself it was all just a bad dream).

glad to be here, and hopefully find some comfort/inspiration from you folks.

(sorry, i guess that wasn't brief at all.) :shifty:

:welcome: misssarah

Wow you have had a really ruff couple of years. I am glad that you found your way to the forum. You will be able to get loads of information, love, and support here.

Sorry to hear that you are relapsing after all you already been through, gotta love CD oo:

So whats the plan now. I hope that it does not mess up your daily life as it seems you are very happy right now.

sending love and hugs your way. :ghug:

Hi Sarah and welcome

Ugh, I'm so sorry to hear the disease is active again

*hugs*

Were you on any sort of maintenance medication after the surgery? Have they brought up any ideas regarding how they're going to hit it this time? What are your current symptoms?

All my best to you.

I was on Pentasa and Imuran, then just Imuran for the past several years. I'm a slow metabolizer, so I take a low dosage (50 mg/day).

About a month ago, I had a real bad spell--I ate something that I normally eat with no problems and bloated up like a pregnant woman, and then the pains started. They got pretty bad, so I went home and curled up with the heating pad. After about 36 hours of not being able to go to the bathroom, severe bloating, and major pains, I knew something was wrong... The next day I finally was able to go (D...) and went on a liquid diet for a few days. The D has been really bad (and D has never really been a problematic symptom for me), up to 10-15 times a days, wakes me in the night, etc, etc. I've been low-residue for the past few weeks and the pains and cramps have subsided for the most part, but the bloating/constipation/D cycle has continued.

Doc said something about Humira next, which scares me a little... We're waiting for my 6-TG test to come back to see what we can do about my Imuran dosage.

I've been kind of a mess for the past month or so--constant anxiety and worries over what is happening, and am so so exhausted all the time that it's hard for me to carry on as I normally do. I can make it to work, but am so tired by the time I get home that I just get into bed and rest. Bah.

Do you take anything for the d? Like lomotil or Imodium. Have you tried bentyl or librax for the abdominal cramping? Personally librax is better. Hope they get your results soon so you can start to feel better.

Yeah, I take the bentyl...it doesn't seem to help TOO much. I mean, it's better than nothing, so if I have it, I take it! Luckily, the cramping has subsided a bit and isn't as constant, so I can handle it a bit better.

The Immodium has never really helped me much--though, like I said, I never really had an issue with the D as much as I have lately. My other concern is that right now, I'm a little worried to take it. It may sound silly, but I feel like I want to know exactly how my body is reacting, and I want to know if nothing is happening. For instance--as of now (1:30p EST), I have not had a BM since about 2:45pm yesterday. But I have eaten. My guts have just been so irregular and weird lately, I feel like taking anything more than I usually take will mask symptoms that I want to be able to discuss with my doctor.

Is that a crazy thing to do? Sometimes I wonder if I'm a glutton for punishment dealing with some of this...

MissSarah you are not crazy at all. I have done that several times. When I know that I have an appointment coming up soon I stop taking certain medications so that the Dr can see the problems for themselves. I truly think that we might be over exaggeration when we say we are having all of the problems but when we get to the Dr we seem OK.