I need some encouragement

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Sunshineonmyface~
Regular Member


Date Joined Sep 2008
Total Posts : 202
   Posted 9/30/2008 9:51 AM (GMT -6)   
I am tired and a little scared. I wrote a previous post about how I got diagnosed after 14 months of bleeding that was the wrong diagnosis.
 
This flare started with my stomach feeling "full" and bloated. Like my actual stomach. Since August it has hurt every moment, and usually worse after I eat. I am also on prilosec.
 
I am scared to find out what else is wrong.
 
I have my prep again tomorrow, with the scopes on Thurs. I had a colonscopy last August while I had bleeding and they didn't find Anything.  When they did the sigmoidscope this August they were shocked to see how bad the ulcers were. Is this common?
 
I feel alone. I have weaned down to 30 mg prednisone, and have lost 10 lbs on it (I think its because my stomach hurts). I am worried I won't be able to get off of it. I am worried how I am going to take it tomorrow and the next day without food.
 
 
If anyone has encouragement I would really appreciate it.

Kiss520
Veteran Member


Date Joined Jun 2008
Total Posts : 742
   Posted 9/30/2008 10:17 AM (GMT -6)   
My symptoms aren't like yours, so I can't say that I can relate; but I know how frustrating it can be to think that something has been missed/not addressed. I knew my diagnosis of proctitis was not accurate, and I was right (I have pancolitis). Whatever news you get after your scope, just remember that there is nothing that you can't overcome. People recover from cancer, people live with AIDS, you will get through whatever you've got. I hope you're able to determine what it is sooner rather than later. The daily struggle with foods and meds is rough, but we're here for you. Try to stay positive and remember that you're not alone.

Keep in touch and let us know how the scope goes. Saying a prayer for you... ;-)
Katie, 30.   Chicago 'burbs.
DX:  Pancolitis
Current Treament:  Asacol 1200 MG 3X daily, Cortenama 100 ML nightly, Iron 325 MG 3X daily, Zoloft 50 MG daily, Bentyl 20 MG and Tylenol (as needed).
Diet/Exercise:  Avoiding trigger foods, eating very healthy.  Yoga or walking, when possible.
Previous Treatment:  Canasa suppositories, Cortifoam, Prednisone, Colazal, Symex DuoTabs, Rowasa.
Status:  Flare
 
 


Dr-A
Veteran Member


Date Joined Jul 2006
Total Posts : 2105
   Posted 9/30/2008 12:49 PM (GMT -6)   
Stress propogates more stress and the same with fear. Our bodies get sent into this perma flight or fight response that will wear you down. Find the thing you enjoy most and focus thought on it. Take 20-30 minutes today and work on some deep breathing in a quiet room to yourself. Focus on breathing with the stomach/diaphragm. There are some things you can take control of and some things you just can't. Worry about the things you can change.

There are tons of people here to help support you and your thoughts so you are not alone. You will get better, you won't be realiant on prednisone, and this week is just a simple test to figure out what is making you feel bad. smilewinkgrin

Party in your bathroom tomorrow invitation only!
Proctitis DX 1999, Pancolitis DX 2008
Lialda 3 day
Immuran
Vitamin E Enemas as needed
Probiotis/GreenTea/VitD+Ca/SuperDHA


Sunshineonmyface~
Regular Member


Date Joined Sep 2008
Total Posts : 202
   Posted 9/30/2008 6:10 PM (GMT -6)   
Thank you~ I am having a lot of stress. I am worried about my 12 yo daughter too. She has had bleeding after "big" bm's and she described what might be a fissure on her bottom. UUGGGHHHH. I am not sure what to think about this.

Sideshowbob
Veteran Member


Date Joined Sep 2005
Total Posts : 698
   Posted 9/30/2008 8:11 PM (GMT -6)   
Hey Sunshineonmyface, tough time you are having here. I think the stress from dealing with this disease is one of the hardest things to deal with. It's no wonder that so many of us also take some form of antianxiety or antidepressant prescription too. That may be an option to help you emotionally deal with the problems you are having.

Also, there are multiple medications to try for this. You can see in my signature what i take on a regular basis, but i also take a few others when i get a flare. I use buscopan and loperamide when i feel a flare coming, as well, i use T3s as they slow down my digestion and help with the D. This doesnt work for everyone, but trial and error is the best thing to figure out what works for you to contain the problems. Also, I find during a flare if i use my salofalk enemas a bit more often it also helps.

Have you looked into any of these things? Or maybe prednisone enemas vs. oral? Also, have you experimented with diet? Some find relief by avoiding foods with lactose (milk, cheese, etc), and certain foods trigger the bloat, etc. Once again, trial and error is the only way to find out what works for YOU.

I hope you find a way to get it under control sooner rather then later. Thoughts are with you. :)
35 year old Male, Husband, Father of the best three kids in the universe.
First Flare was February 2005. Diagnosed June 2005-left-sided Colitis, suspect it has since spread. Started 4000 mg Oral Salofalk June 2005-stopped January 2007. Remission until November 2006. Been in a flare to various degrees since November 2006 to February 2007. Currently in remission.
Presently on 0 mg Prednisone-down from 60 mg!
Weekly 4000 mg Salofalk enemas.
Daily 4000 mg Salofalk oral.
Started Omeprazole 20 mg February 2007.
Co-Moderator-UC Forum


DKTB
New Member


Date Joined Sep 2008
Total Posts : 10
   Posted 10/1/2008 12:38 PM (GMT -6)   
Hey sunshineonmyface, I could relate 2 how u feel. I have severe UC. Diagnosed in March 2007. Its a really difficult disease to cope with, but its possible 2 make it with support and encouragement. Don't give up, if u believe in God just put your trust in Him. I did and thats how I made it through. Just started bleeding again yesterday and my left side is hurting so that I cant even walk properly without the help of a stick. I'm only 20 and I feel so old, but God is good. Atleast i have a supportive boyfriend, family and friends. I could imagine how scared you are, I'm scared too. But God does not give us more than we can bear. I'm not on medication anymore, I'm using coconut oil and flaxseed its really good. Medications only supress the symptoms and have so much side-effects. U should try it even if u use it with your medications. The flaxseeds good to prevent against cancer. Hope your case is not serious. Goodluck and God Bless!

Sunshineonmyface~
Regular Member


Date Joined Sep 2008
Total Posts : 202
   Posted 10/1/2008 1:05 PM (GMT -6)   
Thank you DKTB. I am a Christian and I have been trying to hang on to him, or at least know he is hanging on to me.

I saw a naturopath today. What I liked about her is that she did not freak out about the medicines I am on. I thought maybe she would. She gave me some ideas that she wants to try. It's hard because it's expensive. She talked a lot about yeast overgrowth, have you heard of this? I know there is someone on this board that talks a lot about it, but I can't find the thread.

bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 10/1/2008 7:10 PM (GMT -6)   
Hang it there sunshine : )...things should improve with the right med combo...only a relatively small amount of those with UC cannot be controllled with the right meds.


Moderate Pancolitis
Dx'd 05/2007
8 Pentasa per day (4X2)
Corti Foam p.m.
Probiotics, Bowel Soother, Fish Oil, Calcium, Multi Vitamin and Melatonin
Trying to reduce sugar in my diet but cannot tolerate artificial sweetners
I excersice daily
Did I happen to mention I HATE this disease!!!

Post Edited (bbc) : 10/1/2008 7:17:30 PM (GMT-6)


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 10/2/2008 1:07 PM (GMT -6)   
The naturopath has been a godsend for me. The yeast overgrowth info explained a lot, because my disease goes back to taking Accutane (for acne) just before I developed UC. So I needed the probiotics, but my GI had always been indifferent about them and I could neve decide what to try.
The naturopath is expensive, but I have no regrets about a dime of it!
Feel better.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA maintenance for 20+ years, usually 3 pills 2x day. Use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Tested gluten intolerant and started gluten-free diet, also none of the other foods tested sensitive to (cow's milk, soy, tomato, egg white, others)
Achieved remission for the first time in many, many years! 
Replete probiotic. Slow-release iron and B-12 shots for anemia.
 


Sunshineonmyface~
Regular Member


Date Joined Sep 2008
Total Posts : 202
   Posted 10/2/2008 8:38 PM (GMT -6)   
Thank you guys. I had my tests done today and they said everything looked great and healed! I am so happy. I went down to 20mg on the prednisone.

I have cut out the sugar and carbs. UUGGGH not easy. But every site I have searched on about this disease brings it up, even "official" medical sites. So I have to give it a try.

Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 10/3/2008 9:33 AM (GMT -6)   
Yay! That should help your stress and maybe your tummy.
Consider cutting out gluten (wheat) instead of all carbs (e.g., fruit). Especially if you've lost too much weight, because you'll lose more without sugar and carbs (like Atkins).
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA maintenance for 20+ years, usually 3 pills 2x day. Use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Tested gluten intolerant and started gluten-free diet, also none of the other foods tested sensitive to (cow's milk, soy, tomato, egg white, others)
Achieved remission for the first time in many, many years! 
Replete probiotic. Slow-release iron and B-12 shots for anemia.
 


yuckygut
Regular Member


Date Joined Feb 2008
Total Posts : 214
   Posted 10/3/2008 10:40 PM (GMT -6)   
congratulations sunshine,  and as you are able to come down off your prednisone you will feel even better.  Nothing feels better than a good report from the gastro.
 
------------------------------------------
 
yuckygut
 
diagnosed 1998
 
now off prednisone and colazal
 
drink 1 Haldi daily
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