HealingWell
Search Close Search
☰

New here and feeling defeated

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 5/3/2011 12:37 AM (GMT 0)
Hi all and Thank You for all of the great information I've learned from this forum!!

I was diagnosed with pancolitis 3 weeks ago today, via my first colonoscopy. I've been very sick this entire year and am getting better very quickly...which is great! It just sort of hit me today that "I have a disease", and I have to medicate the rest of my life???

I keep wondering why I've made it to nearly 48 years and have gone undiagnosed. My significant other is TIRED of my what if this and what if that and why didn't any doc ever question my symptoms. I've read so many posts about moving forward and thinking about today. I need my glass to be half full!!!

Wondering if anyone had all of the UC symptoms since childhood, but with only mild flares? I've had tummy troubles since birth. Bleeding was normal for my body. Dad's a hemopheliac and I have thin blood...so I've been told. I've always been told it was IBS. I have a great Doc now, and he doesn't believe anything I've ever been told.

Thanks for giving me a place to unload ;-)
Posted 5/3/2011 1:19 AM (GMT 0)
Hello & welcome to HW :)

Frankly, It is disturbing that you could go to doctors for all these years complaining of blood in stool and tummy trouble and no one ever tried to find the cause. At the same time, I am not surprised because doctors don't seem to take things too seriously. It is hard accepting the diagnosis of UC, it seems so final. The most difficult part for me was believing that I actually have UC and that it's not some kind of bacteria that could be cured with an antibiotic. I still have this unrealistic idea in the back of my head that it isn't what it seems and that maybe some day I will be back to "normal". I didn't have symptoms growing up, I always had a tough time with artificial sweetners and I had boughts of D here and there but nothing that would even remotely signify that this was coming down the pipe. No one that I know of in my family has anything like this... My SO is sick of hearing about my fears too, I just feel tied down sometimes. I can't pick up and move to an island or something because I need my medication and insurance.

I am happy to hear you're doing so much better. What medication are you taking?

Things do get easier once you know what is going on. At least now that you have the diagnosis, you can find a treatment path and take maintenence meds to eliminate the symptoms.
Posted 5/3/2011 1:58 AM (GMT 0)
Facing the diagnosis is so hard. I think for many including me is that you are in denial for a while until the reality of what flaring can really look like day after day .

I am so glad to hear that you have a caring doctor, that alone is a major accomplishent towards managing your symptoms. The resources, the people, in this forum are truly a gift. I know that you will find answers and support here.

Hang in there!
Stacy
Posted 5/3/2011 2:07 AM (GMT 0)
I agree with NSSG, things get easier as you get used to understanding the disease and predicting when "emergencies" will occur. I am still getting used to my new lifestyle of toilet habits, dietry habits etc. I am still trying to find out what i am still capable of doing and what i need help with or what to avoid.

It is interesting that you mention that you had issues even prior to proper diagnosis. I know i also had been having stomach issues for as long as i can remember. No blood but i went roughly 2 - 3 times a day and had random spouts of D (though they would more often than not correlate with milk or something bad i ate) however my parents were very much the same. I always thought my bowel habits were down to nervousness (since I have always been very anxious). Seeing as it has been so long till you were finally diagnosed it makes me wonder how many other people have undiagnosed UC, perhaps the incidence rate is much higher than actually reported?
Posted 5/3/2011 2:12 AM (GMT 0)
Thank you so much for responding! I've read so much from you already :-)

I put all my meds in my signature...not sure how to make them show?

Diaganosed 4/11/11
Prednisone 40 mg per day, now down to 20 mg for 14 days, then 10 mg, then call my doc
Asocol 400 mg @ 4 in the am and 4 in the pm (2 weeks)
Sulfazine EC 500 mg. Taking 2 Sulfazine & 2 Asocol in the am and pm
Anucort HC suppositorie as needed...need 1 every pm
Lomotil as needed...haven't needed any for a week
Potassium CHL ER 10MEQ 2 @ 2xper day (Nearly killed me, potassium levels back to normal)

Started meds when I got home from the colonoscopy. Haven't seen blood since. I started the Sulfazine mixed with Asocol last Thursday and have slept through the night. My Doc only put me on Asocol because I was going on Vacation and didnt' want me to have any side effects from the Sulfazine. Luckily I'm not having any side effects and this is his drug of choice for me.

It is crazy that all these years I have had blood and no one was concerned...which is why I was not concerned. I am SO lucky to have found a competent Doc. I don't typically like docs, but this one is great!

My body is feeling great, just want my mental state to follow... Thank you!
Posted 5/3/2011 2:29 AM (GMT 0)
Loves, you have to click the little checkbox at the bottom under your reply that says "display signature" or something along those lines :)

It sounds like you're on top of things with your medication. You may want to try adding Rowasa or Canasa as you stop the Anucort. You also may want to ask your GI to check your vitamin D & B12 many of us are deficient and take supplements. We also tend to get low iron if we are bleeding a lot. Also make sure you taper slowly after 10mg, doctors sometimes tell you to go to 5mg and then to 0 but if you don't feel stable, I recommend going at 2.5mg increments or even slower. I know it's not fun being on prednisone and you want off ASAP but better to taper a bit slower and get off than to relapse. You may do fine on the quick taper, many people do well that way, it didn't work for me.
Posted 5/3/2011 12:14 PM (GMT 0)
Hi and welcome!
The diagnosis is overwhelming at first....and the concept of "having a chronic disease" takes some getting used to. And it's not the kind of disease one discusses with friends over lunch necessarily!

So, welcome to this great community in which to talk about all these things. My husband is wonderful in so many ways - but I don't even talk to him about my symptoms the way I talk with folks here!

It's wonderful you've found a doc you like..... there is a lot of give and take in dealing with UC; it's so important to have a doc you feel comfortable with!

It's wonderful your body is doing well.... and now for your mind to follow. The prednisone can wreak havoc with one's mood, so... be mindful of that at this point.

And ask whatever questions you might have! This is a great place to learn
Posted 5/3/2011 9:06 PM (GMT 0)
Thanks to you all for the support!

My mind is feeling much better today and my body is still feeling great!! I too am a little anxious and I worry that I'll relapse or something. I'm trying to be more positive thinking and thank my lucky stars that I'm getting better this soon.

Thanks again!
Posted 5/4/2011 12:37 AM (GMT 0)
Happy to see thing are getting better for you.
Posted 5/4/2011 1:13 AM (GMT 0)
Songlady put it all so well. I too can share things here I cannot share even with my very supportive husband.

Also, I've learned things here not even my doctor knew about. I asked him for a prescription for the enemas, something he hadn't even considered.

Welcome to the gang (which none of us wishes we were a part of) :S
Posted 5/5/2011 12:27 AM (GMT 0)
I, too, am a new member.  Tmrw is my GI appt after being diagnosed.  I have been taking the meds for 6 weeks now and my movements have been a lot better (maybe 2  or 3 in the morning).

I am very lucky to have a great husband and children (college age) that I talk freely to and describe how I am feeling (both mentally and physically) 

I have stuck to a low fiber diet b/c I'm afraid to start introducing high fiber or fruits and vegetables back in b/c, sounds weird, i don't know how I will react to them.  I get very frustrated by the fact that I dont' know "why" this started or what will start a flare again??? (first flare was in Dec and second was in Feb).

I still get very very very tired, usually in bed by 8:00 to 8:30 and up by 5:00 a.m. to go to work.

 

Posted 5/5/2011 1:12 PM (GMT 0)
I wouldn't tempt fate just yet with high fiber foods.. Stay on the safe side for as long as you can to heal your colon - my two cents :)

I know how you feel in being frustrated about the "why" and "what will happen next" with this disease. Neither question is answerable, since no two sufferers have the same symptoms, reactions, response to meds etc. and they still don't know what causes this. It'll take a while, and 10 years after diagnosis, I'm still baffled by my UC and angry that I have to be subjected to it every single day.
✚ New Topic ✚ Reply