Crohn's Disease Forum » Your Story » Introducing myself


07-13-2014, 11:31 AM   #1
socalmomof4
 
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Join Date: Jul 2014
Introducing myself

I just signed up on this forum myself. I was diagnosed with Crohn's colitis in Dec 2013. As far as I know I do not have any family history of IBD.
My symptoms were more indicative of UC but after having a Colonoscopy in December my doctor says it's more crohn's disease based on the pathology results.
I started having mild abd pain end of November and increased bleeding which is what prompted the colonoscopy; before that I was on "watch and wait" status. Once the results came in he put me on Lialda and Canasa. The Canasa alleviated the bleeding. After a month I stopped the Canasa, I couldn't take every night inserting that suppository, it was really hard for me. It wasn't uncomfortable it was just that I felt my dignity was slowing going away each time I had to put it in, and since the bleeding stopped I just stopped taking it. I continued with the Lialda. In February 2014 we had to move and so I was undergoing a lot of stress. In March the bleeding starting up again along with some mild abd pain. I saw my doctor for my 2 month check up and of course he says to start the Canasa again and he put me on the max dose of Asacol for 4 weeks then increased dose of Lialda for 2 weeks, which I did; however I still didn't start the Canasa. I would classify myself currently as"non-compliant".
I still haven't started the Canasa. May, June and currently, I have a lot of rectal bleeding and mucous(new symptom) with every single BM. And unlike ever before there is a lot of blood with each BM as well. Every morning I wake up use the bathroom and experience "air farts" (so sorry) they don't have an odor, and occasionally i'll have slight mucous and tissue looking matter come out without there being any stool. About every other stool has more tissue matter than stool. Ive been having a lot more urgency and a lot of days have 2 bm's. I don't get really worried about my symptoms, but with the toilet looking like a bloody, chunky murder scene, im starting to worry that I am really making my condition worse and further complicating things, thus far it seems to have been managed by meds and my symptoms are on a scale of 1 to 10 a '5' I don't want to create a situation that will require more tests, meds, etc.
I have never gone poop so many times in a week before. My normal bowl habits are max 3 times per week before last fall. I plan to pick up the Canasa on Monday and have signed up for mail order rx so I don't run out of my meds anymore. These meds; however, are really expensive $70/month EACH!
Anyway, this turned out to be a long post, sorry. Ive browsed this forum before and I love being able to talk to others who can relate to me and that is really a great feeling. So, an advanced thanks!
07-13-2014, 01:10 PM   #2
Daisy123
Senior Member
When I was first diagnosed I can remember having steroid enemas but not suppositories. Now I am on Pentsa which I find effective along with Imuran. You need to take medication, leaving it unchecked is the worse thing you can do. It might be that it is chunks of undigested food in your stool which is very common, but it is worrying about the blood. I would advise letting your GI know and perhaps repeating the scope. I go about 12 times a day and cannot remember the days of going once or twice. It is surprising what you get used to.
07-13-2014, 01:26 PM   #3
socalmomof4
 
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We certainly do put up with a lot!

I know I need to get on the meds, and will be Monday. Ive found it really difficult to accept being on meds daily for probably the rest of my life. I didn't know about the undigested food thing being a common symptom. Im pretty sure it's mostly tissue, ive examined it pretty well on multiple occasions. It looks like tissue you might have while on your period. I have an appt with my GI in 2 wks. I'll bring all of
this up to him and also ask how often i'll be needing colonoscopies. I think I just need to consistently be on meds.

Thanks for your help
07-13-2014, 01:39 PM   #4
leezapeza
 
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Join Date: Jul 2014
Location: invercargill, New Zealand

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I guys I'm very new at this I was diagnosed on the 3/7/2014 it showed up in a ct scan and I had a abscess in the small bowel very painfull I was put in hospital for 4 days put on iv antibiotic then steriods prednisone and more antibiotic I have and appointment with specialist on tues I'm still coming to terms with it I been sick since feb on and off and it came to a head on tues morn with unbelievable cramps went to my doc told him I had the cramps and I had lost a lot of weight 20 kg over the last 8 months so he got me up checked my tum and said he could feel a lump and now I'm here
07-13-2014, 01:59 PM   #5
Daisy123
Senior Member
It is a horrid illness but the treatment these days is so much better than when I was diagnosed. It is difficult coming to terms with and takes time. I am 30 years on from diagnosis and manage pretty well on medication. It is important to keep on top of things and look after yourself, and also talk about it. I just wish that something like this had been available when I was younger.
07-15-2014, 01:51 AM   #6
RowdyRowdy
 
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Join Date: Mar 2014

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It's a tough thing to deal with. I've had Crohn's for 15 years now, most of my adult life. Like you, I've 4 children, live in SoCal (where mortgage is extremely high), and am on an extended (and forced) six month hiatus from work, in order to get well.

Day by day, my goal is acceptance of my limits. Not easy, considering I'm very passionate about my vocation. Also, with my kids. And it's humbling.

Maybe one good thing I've learned through accepting my limits is that there is grace there. When I am weak, then I am strong. And I've really begun to appreciate that a humble(d) heart is a happy heart.

Hang in there. One day at a time, there is grace in our limits.
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07-15-2014, 05:05 PM   #7
Foodallergykid
 
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Hi, you sound scared and in disbelief. I truly understand that. My son was dx with Crohn's May of 2013. I am still in disbelief. I encourage you to find a doctor with whom you can get to know and trust. I'm nervous too. It is not even me. I wish it were and not my son. He is nine. He also has severe food allergies.
I would like to do an into post, but I have no clue of how.
I pray you get better and get things under control.
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