No symtoms Crohn's or, My First Book

[mle]

no symtoms Crohn's or, My First Book

Hi everyone! I just found this site a couple of days ago and I don' t know why I didn't look for a forum sooner. I actually feel more scared after reading everyone's story and experiences with IBD on this forum. Is my story that unusual? you tell me.

So, there I was a year ago, 26 years old, minding my own business without a care in the world, when very suddenly I got a mild pain/cramp thing in my abdominal area. In fact, I remeber the exact moment that it happened, it was a Friday and I was out to lunch with work friends. It felt kind of like a "side stitch" you get when you run sometimes except it was just in the middle. The thing is, it didn't go away all weekend and actually got a little worse but still didn't keep me from going shopping and to a movie with the Hubby. Mom (a nurse) told me to "rest" my stomach and try a liquid/soft diet for a day. I had never really experienced any stomach/intestinal problems before in my life so I didn't know what was going on. Luckily, I was smart enough to realize that when something (even if little) doesn't go away after 3 days that it's worth getting checked out. So I go to a doc on Monday (I hadn't been sick in years and so I just did eeny, meeny, miny, moe to pick a doc on my insurance to go to) and she said I was describing classic symptoms of appendicitis and sent me to get a CT scan. So she calls me the results that evening say that they didn't see anything wrong with my appendix but that they saw two ovarian cysts that had burst and also a thickening of the bowel wall in my small intestine which could indicate Crohn's, etc. but not to worry since I hadn't had any previous problems. So that was Monday.

Tuesday, I take some ibuprofen and start feeling better, go to work and all that. Actually, at this same time, Hubby came down with the stomach flu really bad so I was trying to take care of him as well. That night, shortly after I went to bed I started getting a pain again and it got worse and WORSE. That was a miserable night! The pain got so bad that I threw up and I thought I was getting the stomach flu too but then I didn't feel any better after vomiting and the pain didn't go away. So first thing in the morning I go back to the doc and she sends me over to surgery to get appendix removed because they were afraid of rupture. Luckily, Hubby was much better by then to drive me around and stuff.

So, it turns out that when they went in laparcopically, they were met with a nasty surprise (to make it worse, I had not been prepped for a bowel surgery). Strickture, bowel perforations galore (old and new), and a nasty, inflamed mess all around my terminal illium. When the surgen came to visit me the next day, he asked if I had withheld information from him concerning my symptoms. I and swore to him that I've NEVER HAD ANY SYMPTOMS! no diarrhea, no cramping, no bloody stool, no nothing! He was pretty surprised but I guess he believed me. They removed about 1 foot of my small bowel and did a resection to connect the small and larget bowel together. Surpisingly, I was only in the hospital 6 days and recovered very quickly. For the record, the absolute worst part of the whole thing was having that damn NG tube down my throat for 4 days!

Anway, if you're still reading, I admire your stamina. So, I wasn't put on any meds following the surgery (stupid if you ask me!) and the GI doc said that after I recovered I would have a colonoscopy and see where everything stood at that time. Of course, the colonoscopy showed more absesses as he called them and started me on 3000mg of Pentasa a day. This GI doc just didn't seem too concerned with my condition and I just felt like I couldn't get any answers out of him (do not settle, doctors are not gods). So in May I went to a new doc (MUCH better) and he put me up to 4000mg of the Pentasa and started me on mercaptopurine (6mp). I've honestly been doing fine on the meds and I feel very good overall. I eat what I want, never have diarrhea and generally feel good. So, even though I have Crohn's (and biopsies have proved it) I just don't feel like I've had Crohn's....especially after reading about the daily lives of people on this forum. It makes me a little scared and feeling like I should take advantage of this time in my life where my health is "good".

Hubby and I have been planning on TTC soon and I've talked with the doc about it. I'm going to have another colonoscopy on October 10th so he can check everything out and to see how the meds have been working (I assume they are cause I feel fine but who knows? I felt fine before the surgery when all hell had broken loose on my gut). I guess I'll probably be coming off the 6mp. Although I had a different GI doc tell me it was "relatively safe" and that the benefits outweighed the risks and that all of his patients have had great outcomes and healthy babies while on the drug. Of course, yet another doc told me that you ABSOLUTELY MUST NOT take that drug when pregnant. This is what I hate most. The uncertainty. The contradictions.

Wow, I've used up WAY too much of your time. My husband hates when I tell stories. He says I go into too much detail. I can live with that. Thanks for reading. It's really good to have a place to come to for questions and comradare.
Thanks,
mle

 

[Kev]

Hi Mle... Welcome to the forum. Don't worry about your post being too long, u should see how much one ol fart on here posts.. Talk about your verbal diarhea. Sheeesh!!

Anyway, has no one ever warned you about spitting in the wind? You could have lost your life with this disease, and the surgery and the drugs may have you feeling much better, but this is a lifelong illness, you aren't out of the woods yet. In fact, you are headed in deeper. Sorry to be the bearer of bad news, but there is no cure for this. OK, so consider yourself slapped on the wrists. Enjoy every bit of the good times you get, there is no guarrantee that your 'blessed' experience with this disease will last. Pardon the expression, but the 'shit' could hit the fan. I hope that you won't take offense... If you do, you can slap my wrists back, okay?

One last thing... what is TTC? I'm a pretty thick ol fart, and just don't clue in, OK?

 

[Sojourn]

Welcome Mle. No problem with long stories. I would suggest that you do really make the most of your time while doing well. Though, of course, that's what everyone should do regardless of whether one has a disease or not. Who knows, you could be in remission for decades. I've heard of it. But then again, it could be like a silent storm brewing. You and your husband might also think about putting some savings aside in case anything does happen. Again, a good thing for any person to do though something many have problems with including myself. Even with insurance, hospital bills can be heavy. I've got about $5000 to pay off from my recent hospitalization and surgery.

 

[mle]

Thanks y'all! Kev, it's okay, I'm still learning all shorthand myself....TTC stands for "trying to concieve". We've been thinking that we shouldn't put it off any longer....especially since I'm in "good" health at the moment. I've heard that if you're in remission when you get pregnant that all the hormones really help the Crohn's to improve temporarily. I think my biggest fear right now is going off the 6mp, seems like things often don't bode well when people stop any medications. But you know, I'm not going to worry about something that hasn't happened yet.

I think reading this forum, even for just the past week, has given me a reality check. I was in real denial after the surgury....I thought, Oh they removed all the bad parts I should be good to go for at least 10 years! Ha! that first colonoscopy sobered me up pretty quick and I started doing more research and trying to learn all I could.

Luckily, I have great insurance now where I work but I know I won't be working there forever. Sojourn, I know about hospital bills....they're scary! It's pretty crappy how extremely limited insurance options are (at least here in the US).