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Crohn's Disease
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Posted 1/11/2010 2:08 PM (GMT 0)
Hi Everyone,Sorry to be such a pain in the butt,. but I did not get any answers so I am not for sure what to ask GI tomorrow. Maybe today someone will help me. I thought last night I was getting a break. But over night it flared back up worse then it has been. It seems like over night is when it always gets worse. This morning blood and pieces of meat. Getting scared, I did a Canasa and have took my Colazal. Am getting ready to take Entocort and a percocet. Belly is cramping and butt is hurting. Have not ate enough to have a poo so all I am getting is blood and guts. I am so scared of going to the hospital, but I feel I am probaly headed there. Didn't make it a year. I have not had any surgery. What is a ressection? And I fully do not understand a fistula? Can you help? What self help supplements is good to take? I take Probiotics, fish oil, Vit d, Vit b, and I am also Anemic. Anyone that can help me I would sincerely appreciate it. I am hurting and scared, need a friend that understands. Please, someone respond. Thanks, Angel
Posted 1/11/2010 2:19 PM (GMT 0)
If you are not able to get ahold of your doctor and get some satisfactory answers as to what is going on and the pain gets to be too much, please do go to the ER. Sounds like the supplements you are taking are the same as most of us. Have you eaten any foods that may have been too hard on your system. Sometimes eating something too hard for your system will tear up your guts and make you feel pretty bad. I follow a low residue diet all the time and it works great for me. Maybe you should try googling it and get some diet ideas. I hope you get feeling better soon.

Hugs
Gail*Nanners*
Posted 1/11/2010 2:57 PM (GMT 0)
Hi, I thought maybe I did eat something over new years, Candied Yams, I think is the culprit. But I have done everything I can To try and calm it back down. My Gi called in the Entocort, this is my first time on it. Am kind of scared of it and hard meds. Don't know nothing about it except it is a replacement for preds, which I can't handle. I go to my GI tomorrow. Thats why I am looking for help,maybe some questions to ask, maybe some different meds I have not tried. Been on Remecade for 10 months, have never gotten the 8 weeks, lasts about 6 or7 then wears off. Thanks for your help, Angel
Posted 1/12/2010 8:48 PM (GMT 0)
Entocort is not so hard on the system as prednisone. Good luck! :-) Bee
Posted 1/12/2010 10:15 PM (GMT 0)
Hi elephantlover just wanted to say hi. do you have uc or crohns. im only wondering as i read your posts along time ago on the UC line. then you left. I always wondered how you were doing. your posts were some of the first ones i read as i didnt understand about UC then and how bad it was. this illness is bad I was really sick that time. had joint pain. and had the beginings of urgecy and left sided pain. anyway im just so glad you are still with us. please take care I hope you get better i really hope you do.
Posted 1/12/2010 10:37 PM (GMT 0)
Hi elephant lover,

Try not to panic. Bleeding is always something to discuss with your doctor but the amount of blood/mucus matters too. I bleed pretty much every day and have plenty of mucus. I guess over the years I've gotten used to it, but it did make me feel really scared at first. Starting Entocort will be good - steroids can help get things under control quickly.

What I did want to share was my own hindsight for my Remicade use. I used to get really upset that it didn't last the entire 8 weeks. My insurance did let me move the infusions to 6-7 weeks apart which helped. So, try to talk to your doctor about shortening the amount of time between your infusions. If it's helping you, that's great. Try not to jump ship to another TNF/biologic until you know you've exhausted Remicade. I jumped to Humira and then was not able to return to Remicade.

So, you could ask your doc:

* Can you have the Remicade infusions more often? Request that they contact your insurance company to help get approval noting that you need more frequent treatments. (It is safe - RA patients can get it every 4 weeks and then some can double the dose, too)

* How long does your GI see you on Entocort? (Probably until you get under control)

* If you're bleeding a lot, you might ask the doc to check to see if you are anemic.

That's all I can think of off hand. Just try not to be too scared of the "big" drugs. It's hard when you first start up with them - they all scared me one by one. But, some of us need them to feel well. And quality of life matters a lot - it sounds like you're having a rough time.

Also I cannot take pred, but methylprednisolone is ok. I got hives from prednisone, so they switched me and methylpred works great. I haven't read your earlier posts, why doesn't pred work for you? If Entocort doesn't help, you can ask your doc about that. They've never given me Entocort because it mainly helps (I've been told by a few GIs) the ileum area and a tiny bit of the large intestine, but hasn't proven especially helpful for the rectal area. Do you know where your inflammation is?

Good luck and hang in there! You'll get through this...
Posted 1/13/2010 3:27 AM (GMT 0)

Hi Everyone, Thanks so much for your kind words and yes, together we will all get thru this cruel desease. Went to my GI today, my hubby, me and her had a good talk. She was very satisfyed at me using my drugs I had on hand without really freaking out this time. She started me on the Entecort over the phone last Thursday and I started feeling better yesterday and today I am almost back to myself. I Liked the Entocort, did not have the side effects I have with Preds. She said I was one of the few that flare-ups comes on really quick but leaves the same way. She said the important thing was to stay calm and learn to control it until I could get in touch with her. She said stress and freaking out is the worse things you can do. We talked about moving my Remecade treatments closer. She wants me to stay on the Entocort two a day for 2 weeks then one a day for a week. I go Jan. 25 for my Remecade. I was diag. as having Chrohn's 5 months ago by the Prometheus Lab in California. This flare up was in my Colon, and we got it in time. Entocort from the top And Canasa from the bottom,lol, trying to keep the chin up. I should be alright. But this stuff really scares me with this high powered drugs. I can not do Pred's because of my sugar, the last time I was on it I was on two Lantus (insulin) shots and two Glucotrol pills a day just to keep my sugar at a decent (not good) level. And I could not eat and lost so much weight. So my PCP and GI agrees I can not do the pred's unless no choice. I have had to have a blood transfusion because of amount of blood I lost, that was last April when I spent almost the entire month in Hospital. That was really scary. It seems like when I get a flare-up I always lose so much blood. I am also anemic now and take iron supplements, along with others. I want to thank each one of you for seeing me thru this and caring. Hellokitty, I will not leave this site and stay gone for so long again, I look forward to talking to you again. And SR5599 thanks for your info too. I never realized what a friendly and caring site this is til tonite. When I got home from Dr,s I was excited about feeling good and my Dr's being so possitive and then I read your E-mails and now my night is really nice and I feel so much better. Thank you again for caring and please keep in touch. I need a friend who I can really talk to about this stuff who really understands, because you are going thru it also. I do hope from the bottom of my HEART that me and all of you get this stuff under control and they find a cure real soon. We all have suffered enough. With Love & Hugs, and GREAT big thanks, Angel 

Posted 1/13/2010 5:22 AM (GMT 0)
I'm glad to hear it Angel... I got worried this evening that what I had typed might be mistaken as if I were saying "it's no big deal, I go through it" Nothing further from the truth - all of this is terrifying every step of the way.

I hemorrhaged a couple years ago - lost half my blood. Spent a week in the hospital twice only, so I feel pretty fortunate, actually. But, I've tried every drug. I'm losing faith in Cimzia. I think I was honestly better on Tysabri, but I just can't emotionally handle that med. So...

All I wanted to be sure what that you read my post as it was intended which was very much supportive! Just wanted to make sure since black and white doesn't carry the tone of voice to display the intended emotions.

I'm so glad your appt went well. It's the best feeling when you can really communicate with your GI. Hang in there!
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