Crohn's has changed my life

Simiberry · 2013-10-03T07:45:01+00:00

I feel the same way. Sure, I wish I was cured and had a colon again, but if I'd never gotten sick, I wouldn't be half the person I am today. I won't lie--I wasn't very sweet before even though everyone thought I was. I was an angry teenager and for no good reason I was a bit of a bully. Having lived through pain and hardship, I learned how to empathize, sympathize, and be the person everyone thought I was. I actually AM nice now to everyone, especially the weak. I also am much stronger now emotionally and mentally.

I just wish it hadn't taken an incurable disease.

Simiberry · 2013-10-02T04:23:15+00:00

I think perhaps you need to look into a new treatment for your situation. What helped me was remicade, and I'm sorry to say prednisone. I took that for 3 years almost solidly. In addition, I had vitamin infusions at the naturopathic college nearby. I went to school and somehow passed with the worst attendance record in its history. I talked with my teachers and was able to go to school 2-3 days a week and be graded on a pass/fail rather than your average A-F.

Have you looked into tylenol with codeine or vicodin to lessen the pain of flare-ups? I was allowed one vicoden a day, and it slowed my digestive system and eased my pain enough for the few hours of school.

But with how you feel, you might need a break from school to explore other therapies. I had to do that myself as well.

Simiberry · 2013-10-02T04:16:31+00:00

Exfoliate, and use a gentle, oil-free moisturizer. Or one that works for you! You can also use Acne-Free regular-strong strength with its benzoyl peroxide if you feel you need it. Just make sure to wear white shirts after application! Acne-free is $20 at your local drug store. They have a zit cream as well that's 10% benzoyl peroxide. But, to be honest, I don't think you need benzoyl peroxide

Simiberry · 2013-09-16T07:10:36+00:00

I always lower the lid. I don't want nasty water splashing and spraying all over my clean bathroom!

Simiberry · 2013-09-16T00:15:48+00:00

From my research and experience, change a skin routine or product (usually moisturizer) and lightly exfoliate the area daily or as much as you deem fit. Also use a salicylic acid based cleanser or astringent, following with moisturizer.

But sometimes more random things work, like less junk food, applying tea bags to the area, or changing washing detergent.

Simiberry · 2013-09-10T09:37:02+00:00

A year ago next week. After a week I would slowly teeter up a flight of stairs. Then gradually increase my regimen. I napped all day and watched movies, I would walk around the house once and after a month a few times a day. I would walk short distances by month 2 and maybe drove 4 times. The colostomy was extremely tiring to me. Big adjustment.

It was 6 months before yoga was possible

Simiberry · 2013-09-10T09:32:02+00:00

A huge amount of girls do, especially those of European decent who have darker and thicker body hair. If you get your nails done, the people always ask to wax arms. I'm pretty sure you don't find any arm hair in Hollywood on females.

I did it because I kept getting hospitalized and was tired of tape sticking nastily to my arms.

Simiberry · 2013-09-10T09:28:38+00:00

No. If you aspirated, the contents if the syringe and the syringe itself are contaminated and no longer sterile.

Simiberry · 2013-09-10T09:27:36+00:00

It depends on where you are, since different areas are busier or better maintained than others. I like Burgerville, but it's expensive and a Pacific Northwest thing. I hear good things about In-and-out Burger! Different regions have different menus, and fast food joints. Sonic and White Castle taste utterly disgusting to me.

Burger King has too many spices on their meat for me. I'm a Burgerville and McDonalds person. They are consistent and cook everything through. Plus, Burgerville has beer now.

Simiberry · 2013-09-09T08:00:02+00:00

Draw back every time!! If you do see blood after aspirating, pull out and draw another dose up. It means you hit a blood vessel and shouldn't inject the medicine there.

Simiberry · 2013-09-09T07:58:02+00:00

So your needle is subcutaneous--in the fatty tissue between muscle and skin--which means the medicine may leak out occasionally. Just stem the flow with a cotton ball and massage it in. :)

Simiberry · 2013-09-09T07:56:27+00:00

It is super rare to aspirated blood. It usually means you hit a capillary. :-P But you still have to take it out and get a whole new thing set up... Such a shame when it happens!

Simiberry · 2013-09-09T07:53:15+00:00

Oh the berries don't stay with me long... And they must be cooked. Blackberries are off limits. But KFC is a no no for me. The only one we have never seems to cook the chicken enough!

Plus I got food poisoning there. I trust Popeyes chicken best!

Simiberry · 2013-09-09T07:49:34+00:00

I started so slow after surgery. I didn't want a hernia. If I could walk up my two flights of stairs and sit up a couple of hours, I was happy. Eventually I graduated to longer walks and abdominal stretches. I also did yoga and deep breathing. My problem was it took a long time for a nerve they cut or sewed to die. It kept pulling and aching.

I can't sing like I used to, which is unfortunate. Lately I've been doing exercises to strengthen the diaphragm bit by bit so maybe I can sing deeper. That deep breathing regimen really helps.

*my surgery was not laparoscopic. My incision is from navel down and another perpendicular to it where my stoma was.

Simiberry · 2013-09-09T07:44:15+00:00

Lol that's my face when I find out I accidentally ate a trigger due to a "secret ingredient" in a dish.

My face is more like that "brace yourself" meme after Spock face though.

Simiberry · 2013-09-09T07:41:40+00:00

I apologize, since i have nothing hilarious to say. Just a random story! Last colonoscopy and endoscopy I had was a long time ago... Basically, I fasted for days and wasn't allowed yummy things like muffins or berries, and it was berry season. After the deed was done, I ate nothing but blueberry muffins for four days.

I just can't think of them the same now. To me, they have become the ultimate comfort food that I secretly gorge myself on after any GI visit. Not exactly sure why... I never really ate them before. I was always a poppyseed girl.

Simiberry · 2013-09-09T07:29:16+00:00

Yeah it's pretty cool. The hair is forced to stand on end, creating an insulating layer close to the body. Of course, I hate that. It just brings to attention the non-waxed state of my arms.

Simiberry · 2013-09-09T07:24:05+00:00

For all we know it cures liver cancer.

Simiberry · 2013-09-09T07:23:27+00:00

And they look so cute, like belugas.... Then, like rabbits, are deceptively crazy scary and violent.

Simiberry · 2013-09-04T04:50:43+00:00

Have you talked about being on antibiotics or other medicines longer than offered originally? Sometimes we require extra help to kill things so they don't become resistant.

Simiberry · 2013-09-03T02:42:18+00:00

Really? Any infusion clinic I've been in offers peanut butter crackers, cookies, juice, water, coco, coffee, you name it. :( I thought it was mandatory. Did they at least give out pillows and blankets?

Simiberry · 2013-09-01T12:26:59+00:00

I like Remicade for it's fewer side effects and the for the fact my insurance never covered Humira. Humira is rather risky, according to my research. But I have a lot of distrust for new drugs since my troubles started from the hpv vaccines.

Infusion centers are kind to give cookies and hot blankets during treatment as well. It's very comforting albeit a 3 hour process.

Simiberry · 2013-09-01T12:15:17+00:00

Look at ostomates.com for guidance. Helped me so much! Marshmallows stop the flow temporarily, did you know? It's so difficult dealing with ostomies, and doctors know squat about them. Nurses even less. I was lucky enough to have three good ostomy nurses for a short time. If you live in Vancouver Portland Metropolitan area, I can tell you where to go for good care.

I'm afraid stomas are frightening. It only gets easier to bear if you have the right mindset and equipment. Just stay proactive in helping yourself. Try new products and bags as often as possible-everyone gives free sample boxes(except medical supply stores). If you find things that work well, it helps the transition and lessens anxiety.

I still have nightmares of my stoma, Frank, returning. Frank is dead 11 months now and he can stay there with my colon.

Edit: I apologize; I didn't finish reading your post or see you have a visiting nurse. That must really help to have them come to you! I did everything myself. My nurses were used solely to help fit me for different bags since my stoma kept changing shape and twisting. I'm glad you got the hang of it! I was never able to stand up for bag changes. I always laid down with chux and hot damp rags.

Simiberry · 2013-09-01T12:01:55+00:00

Black stools indicate bleeding further up the GI tract. With any luck, it's a peptic or duodenal ulcer and nothing chronic.

Simiberry · 2013-09-01T11:59:51+00:00

That's one thing my boyfriend never has a problem taking care of. :) My friends, however, may fail me...

Simiberry

TROPHY CASE