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minna40
New Member


Date Joined Oct 2008
Total Posts : 7
   Posted 10/30/2008 10:16 AM (GMT -6)   
I am 31 years old, a new mom (18 months) and new to the world of UC. I was diagnosed in June of 2008 after a colonscopy, was prescribed asacol and sent home to be followed-up with in three months. The follow-up really didn't give me any additional information and after reading several articles and website information concerning UC I wanted a second option. I suppose it is denial, but I want answers. I was pretty much sent home with pills and no info. I went to a GI a couple of weeks ago and his findings were "questionable" at this point. He took me off asacol and told me to call him if things worsened. The GI told me that there was no reason to change my diet and again I was sent home with relatively no more information than I had before.

Here are my symptoms:
abdominal cramping (not major...an inconvenience really)
rectal itch/burn (only after BM & not every time)
colon ulcers (confirmed by C-scopy)

Meds:
Multi-vitamin
probiotics
antioxidants

I am stressed and need guidance from someone. Anyone in my situation?

Thanks! I am so glad that I found a forum where I can hopefully get some answers.

Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 10/30/2008 10:30 AM (GMT -6)   
Hi Minna40, and welcome to HealingWell! I'm sorry that you had to find us this way, but everyone here is very supportive and knowledgable. So....you are not on any meds as of today? If you are not feeling comfortable with your GI, then find a new one asap! It took me two docs before I found one that would partner with me in my quest for remission. Yes, partner. It takes both of you to work through the different meds or diet or whatever it is that will get you closer to remission....and of course be open to listen and answer your questions. I'm glad to see you are on probiotics; that's a good start. As for meds and diet; what works for some doesn't for others. That's what's so tough about this illness; one size doesn't fit all. For the "burn" maybe try some wipes such as Prep H, or Cottenelle with Aloe. For the cramping, I usually just take a Diazapam, but others take anti-spasmodics....I'm sure others will chime in with helpful hints. Again, welcome, and glad to have you aboard!

Carol

Remicade - will have my 25th infusion on November 26 
Vitamin B-12/Biotin, Probiotics
 
Co-Moderator for the UC Forum
 
 


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 10/30/2008 11:32 AM (GMT -6)   
Welcome to HealingWell, Minna. You say you need answers, and I'm sure you'll get them here. Perhaps you could be a little more specific on what questions you would like to have answered, as that may get you more helpful information. Also, check out the UC resources thread at the top of the page. Lots of helpful information there.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
"My life is an ongoing medical adventure"
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


minna40
New Member


Date Joined Oct 2008
Total Posts : 7
   Posted 10/30/2008 1:43 PM (GMT -6)   
I guess I want to know if I have UC or not. There are so many resources and options of care that I am a bit overwhelmed at the moment. More of my questions probably don't have answers or at least they are vague...like how did I get this? Genetics, environmental, post-pregnancy enema, antibiotics, infection, etc. How should I take care of myself to prevent serious complications? Why are my doctors not interested in giving me advice or suggestions for my care? Perhaps my situation is so questionable that they need me to be sick in order to make a determination.

I am just talking to myself know....these are random thoughts that have been running through my head. Rambling.

princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 10/30/2008 1:56 PM (GMT -6)   
Get a second opinion on the pics from your scope. If the UC diagnosis is confirmed, you probably need to be on some type of ASA medication - at least some rectal meds.

Doctors generally won't give you dietary advice.

You can learn all you need to know about UC online and through excellent books - many written by IBD sufferers. It's a more balanced and much more detailed source of information than what your doctor may give you. I can recommend some books, if you're interested. I believe it's key for IBD patients to educate themselves.
Diagnosed with ulcerative colitis spring 1999.
 
Maintenance dose sulfasalazine.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice. Oregano oil antibiotic, antiviral, antifungal. Long-term remission with only minor blips.
 
 


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 10/30/2008 3:08 PM (GMT -6)   
The cause of UC is not known for certain. There is a genetic component to it, as people with family members who have UC or Crohn's are more likely to have UC, but it isn't directly inherited like, say, blue eyes. It's believed that environmental triggers are necessary to activate the disease. Often the trigger is stress; some people feel their disease was triggered by something in their diet, medication they took or other life events.

There are other causes of colitis - infections, for instance - which resolve. Ulcerative colitis is a chronic disease for which there is no medical cure. It sounds as if you're doing well at this time, just be alert for changes and do call the doctor if you see any. The longer you let symptoms go on, the longer it can take to bring them under control. The majority of people with UC are able to live normal lives with maintenance medication.

Diet will vary for us, as the disease isn't the same for all. Commonly, most of us find that when we're having symptoms that really high-fiber, fatty and spicy foods will bother us. Lactose and gluten intolerance are also more common in people with UC; if you seem to have problems with these your doctor can test. One of the best ways to find out what foods (if any) bother you is to keep a food diary for a few months. Note what you ate and any symptoms. If you find that one food consistently causes you difficulty, you may want to eliminate that from your diet. Personally, now that I'm in remission I eat everything I ate before UC.

Welcome to HealingWell, and remember as you read the posts here, most of us are here because we're having trouble right now and need help. The majority of people with UC aren't posting here because they're out living their lives and not thinking about UC.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
"My life is an ongoing medical adventure"
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


run4pancakes
Veteran Member


Date Joined Oct 2008
Total Posts : 938
   Posted 10/30/2008 3:18 PM (GMT -6)   
Hi, Minna!  I am also 31 and the mom of an 18 month old.  I've at time experienced a sort of vagueness with my GI and have considered changing docs, but usually if I push I can get the info I need out of her.  I would have a hard time with that much uncertainty and would likely seek a second opinion.  If you are having symptoms and just let them go on, you are only doing more damage to your colon. 
 
Nobody here can tell you if you have UC, only a doctor who examines you and the results of your tests can tell you that.  I am somewhat surprised they took you off of the meds, though.  I do agree with some previous posters--don't expect much dietary advice from your doc.  Most of them just don't do it for some reason. 
 
Good luck to you!

minna40
New Member


Date Joined Oct 2008
Total Posts : 7
   Posted 10/31/2008 10:48 AM (GMT -6)   
Thank you for your replies. I know much of what has been posted as I have been reading a lot, so I guess it boils down to self-discovery and sharing/comparing notes with other UCer's.

"Welcome to HealingWell, and remember as you read the posts here, most of us are here because we're having trouble right now and need help. The majority of people with UC aren't posting here because they're out living their lives and not thinking about UC."

I guess I need to get out of here and live my life!!! Thanks again!

lil-momma
Regular Member


Date Joined Feb 2008
Total Posts : 132
   Posted 10/31/2008 1:30 PM (GMT -6)   
Welcome, you will find the best group of people on here! They have been my saving grace! When I was diagnosed, I didn't pay much attention to it as far as research and such. I believed I had developed an allergy to food in general. I started a log of everything I ate and it's effect. I soon discovered my danger foods and I stay away from them completely. Cheating isn't worth it for me. Stress is my biggest enemy and haven't yet discovered how to control that. When my daughter was diagnosed with Crohn's, I starting researching everything and anything to help her. I have learned a lot about both UC and Crohn's. Quite a bit has come from this forum. Unfortunately, everyone is different and therefore are not going to be affected the same either. I live a pretty normal life. With that being said, UC is part of my life so I know where all the restrooms are in a large radius =) I have 4 children ranging from 16 - 2 whom keep me very busy. With 2 of us in our home with an IBD, poo is a normal conversation. We always be sure to have extra time in case one of us has to make a pit stop, lol. Many people don't understand our issues which seems to be our biggest obstacle and you will find tremendous support on here with that. I hope you find the answers you are looking for. Make sure to eat a healthy diet and live your life! I will add you to my IBD family prayer list. Much love & laughter to you!
Dx w/UC in 2001 - controlled by diet.
Mother to 15 yr old daughter dx w/CD 9/07-  she had surgery for abcesses 11/07.  She is taking multi-vit, iron for anemia, bentyl prn, prilosec 20mg-x2, pentasa  500mg-x5, prednisone 10mg-x6, 6 mp 50mg-x3, Flagyl 250mg-x3


cra43
Regular Member


Date Joined May 2008
Total Posts : 172
   Posted 10/31/2008 2:41 PM (GMT -6)   
Minna, You say you have inconvenient cramping and just some itching? That sounds kinda mild considering what other folks have.
You don't mention that you have bloody mucousy loose stools, that are frequent.
I'm talking 10 to 15 times a day to the potty. Trust me, that happens.
And the cramping is more then inconvenient, they are quite painful.
I've been watching my son suffer for a long time with this. Maybe you don't even have colitis! That would be wonderful, if it is only an infection or something else that can be fixed. You only mention the ulcers in the colon for now. So, get another opinion and ask the doctor lots of questions. Good luck and let us know the outcome.

minna40
New Member


Date Joined Oct 2008
Total Posts : 7
   Posted 11/6/2008 9:19 AM (GMT -6)   
I have this theory of my own concerning my diagnosed "non-descript" colitis...I know self-diagnosis is not always a good thing but I feel that something else is up. I am currently scheduled for sinus surgery for a deviated septum & a cyst in my left sinus based on my chronic sinusitis. I am starting to wonder if I haven't been over-medicated with antibiotics due to this condition. There were several instances when I couldn't kick an infection with less than 6 weeks of antibiotics! The cyst and septum were preventing proper drainage and harboring the infection longer. Could this colitis stem from the flora in my gut being completely out of whack? I started probiotics and have felt great since. Little to no cramping, no urgency, which I didn't have much of anyway. (When my family doctor gave me antibiotics the mucus and frequency would stop completely on the two instances it happened.) I don't know. I keep reading, researching, chatting and hoping doctors will point me in the right direction.

Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 11/6/2008 5:56 PM (GMT -6)   
That is the theory/explanation I get from my Naturopathic doc. He has made a lot of sense out of this for me. Hopefully you have nipped it with the probiotics!! That would be great.
And I hope your sinus surgery goes well, you'll probably be soon feeling better than you have in a long time!
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed gluten, other intolerances; started diet without gluten, soy, dairy, tomato etc. Replete probiotic first, then Forte pills. 
Achieved remission for the first time in many, many years!? Seemed so, but colonoscopy Oct. 6 proved not so, heavy inflammation in ascending colon & will be using Rowasa again. But I AM better.
 
 


minna40
New Member


Date Joined Oct 2008
Total Posts : 7
   Posted 11/7/2008 2:41 PM (GMT -6)   
Thanks so much! I have hoping to improve my quality of life all around. I'm tired of being tired, KWIM?
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