New to site but not Crohns

[Tashy]

Hi, I was diagnosed with Crohns over 7 years ago. In October of 01 I started having stomach pains but they would go away quickly enough. I got married on November 16 and then on Dec 17 I got the pains again. They would not go away and I ended up at the ER. They thought it was appendicitis and did an emergency apendectomy. My appendix was normal but my small bowel was inflamed. I got out of the hospital on my husbands birthday. After a few different tests they said I had Crohns. My mom kept telling me they were probably wrong because everything she read said people with this disease loose weight easily and are often underweight. I weigh over 250. I've been on a number of meds and was in the hospital about 4 times that first year with partial blockages. I ended up loosing insurance for a while and went without treatment for a while. I got insurance and went to one dr who said i was in remission and didn't put me on any meds. Insurance changed not long after that and I found a new dr. I did put me on pentasa. In October of last year I started having constant rectal bleeding. I called his office and they didn't even make notes for me. They told me I had to have a colonoscopy and they wanted to schedule it for Nov 16 (about 3 weeks later). I told them I was having a surgery on the 19th and needed to check if I could do the procedures so close together. I didn't feel good about the answer and called back asking to leave a message for the dr. He didn't call me back for over a week. Luckily I had contacted another GI that I had used when I was first diagnosed. I am now taking 6kmg of pentasa a day.
On top of Crohns I also have PCOS (PolyCystic Overian Syndrom). I have depression as well. I end up taking 17+ pills a day with everything that goes on. I've been having problems trying to deal with things and don't have a lot of friends. One email friend suggested checking out forums so we will see how things go.

 

[BWS1982]

Nice to meet you. Things can't hurt just trying out forums, and this is the only one I've tried, I liked it a lot, so I stuck with it. I was reluctant to start, since it was further admission/proof/validation of me having this disease, even though denial would be naive, the more I engulf myself with info about it, the more I thought it'd depress me (have bipolar/depression/minor anxiety too)....well, to an extent I do best if I get certain exposure of this disease, like the forum, but still if I read too much into the disease I start to freak out and it does more harm than good. Already did a lot of reading long ago when first diagnosed, as I was so freaked I had to.

Anways, long winded welcome, you'll find optimism and support here, but nothing is sugarcoated to a point where it's diluted and slanted either. If someone should change things up (like continually eating a very troublesome food) or do something they're not doing (like seeing a professional or going to the ER), it'll be said.

 

[Shakedown]

A pharmacist told me over 4k mg of Pentasa a day could cause bleeding on the inside due to irritation from the medicine. Thought I'd run that past ya since I see you're taking 6k. Granted I'm not a Dr. nor a pharmacist...... it's just what I got when inquiring.

 

[BWS1982]

4k mg, is simply 4 grams, and I was on Asacol, 4.8 grams at my highest before being removed. Asacol is similar but I have no clue on what is different about them...

 

[Kev]

well, hello tashy. Hope you find this forum helpful. I know its definitely friendly, and we all have something in common. Sorry to hear of your troubles, hope it all starts to turn around soon. Don't know if this is your 1st colonoscopy you're facing? If it is, then it's no big deal. worst part is the prep., and it gives doctors the best idea of what's really going on in the colon. As for Pentasa, Asacol, even Salofalk, they are all forms of 5-ASA.. like an extra strength coated aspirin to reduce inflamation inside the GI tract. ASA can irritate, it can also thin the blood.. but it is a pretty standard treatment for most forms of Crohns/IBD.
6 kmg is equal to 6g (grams).. Dosages vary depending on the brand name & your severity of inflamation, perhaps even doctor preference or experience. As to weight... depending on where the disease is centred, how extensive it is, or how long you've had it... you may start to lose weight.. because your GI tract isn't as good at absorbing/retaining nutrition as it was before, or you end up eating a lot less... It happens, at my worst I dropped 60 - 70 lbs, but I put a lot back on. If people, anybody, EVEN doctors could tell by looking whether one has this disease or not; then so many people wouldn't go so long mis-diagnosed. I think your mothers impression the doctors got it wrong ISN'T the case. Blood tests are good indicators, a scope test is often conclusive.

Anyway, don't know if that helps you or not. Good luck with everything, keep us posted on how you make out, OK? Take care

 

[elp888]

Hi Tashy, sorry to hear about your problems. Welcome!

 

[Guest]

hi tashy, & welcome to the forum

really sorry to hear you have so much to deal with right now, & i hope things turn around in a better direction for you real soon.

when i joined this forum, i was delighted to find so much support & information here, and i've learned & gained a lot, in the short time i've been here. i truly hope you come to gain positive things from here too. looking forward to seeing your posts

 

[BWS1982]

I wouldn't consider weight loss to be a deciding factor that is mandatory with this disease, just very likely.