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New- and "in denial" questions

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Ulcerative Colitis
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Posted 1/29/2010 12:36 AM (GMT 0)
 

Hello,

I was diagnosed w/ ulcerative colitis, then proctitis at the 2nd colonoscopy- not sure which it is 6 yrs. ago.  I am still in denile and have been poorly managing it with med.  I took canasa, then mesalamine and that helped.

OK- last yr. I had a colonoscopy done and it came back fine.  Then 3 wks later bleeding... started again.  I have been in denile with the bleeding and not doing too much except med once and a while when I force myself.  But, the bleeding has gone on all yr.

I called the doctor today for more meds. since running out and now feeling more sick with alot more bleeding- and i told them why.  The nurse kind of was in shock that I had this going on so long and haven't done anything and insisted I come in right away.

My impression of this is that I am not in any danger, and that it is more of an annoyance, especially since it is proctitis-if that is the case, I thought that was not so bad.  I guess I could get a secondary infection from having ulcers for so long-?

My questions are- is it really so bad to kind of let it go?  Wont the ulcers just go into remission sometimes on there own?  What happens if I just keep going this way with "sort of" caring for the condition when it is too uncomfortable?

I have an appoint. on Tues.  and the nurse said to expect som blood work and "other tests"  - like what?? 

Thanks for any advice!

I wish it would just go away.

Posted 1/29/2010 1:31 AM (GMT 0)
If you are ok with possibly going into a bad flare where you get no more than maybe 2 hours sleep at night for many months, can't eat, can't stand up straight or lay down on your back because it puts too much pressure on your abdomen, get anemic, depressed, lose muscle tone, sex drive, can't leave your home, barely leave the bathroom, can't play with your kids, constantly feel like you are gonna throw up...... etc, then ignoring it may be ok for you.

Symptoms sometimes do just go away, but you still have an auto-immune disease which is going to flare up at times. By just letting things go you risk going into uncontrollable flares. Leave the colon bleeding long enough and you also increase your chances of developing colon cancer. Its actually a pretty serious disease that will eventually force you to look at it seriously. Just do as much as you can to keep yourself from getting in that spiral.
Posted 1/29/2010 1:49 AM (GMT 0)
I'm sure they want to make sure you are not anemic from the bleeding.
I always bled a little and only got anemic when I was flaring badly, so didn't worry about it too much (although someone not familiar with the disease might have been shocked to see the blood). When I flared (bled a lot more and had urgency, pain) I never got better without prednisone, although I always tried.
But I also never went completely into remission until Remicade, but others are apparently able to get years of remission between flares, through all variety of meds and other approaches.
Posted 1/29/2010 2:40 AM (GMT 0)
You need to take your maitenance meds every day! And/or (preferably 'and' until you're feeling better) find a diet and supplements that seem to help you.
Posted 1/29/2010 4:13 AM (GMT 0)
I also went through the exact same denial twice. Once, before I was diagnosed, and then I ignored my symptoms later a second time. I know it's difficult to admit it when things are wrong but trust me, it isn't worth hiding your symptoms. One of my biggest regrets is not getting help sooner and not ignoring my symptoms when they were serious. I'm sure everyone just wishes that it would go away, but the reality is, is that it won't, and the symptoms definitely wont go away unless you manage them and get help. I've just recently come to this conclusion, and made a promise to myself to never ignore symptoms again and I hope that you will do the same.
Posted 1/29/2010 9:04 AM (GMT 0)
Ok me and you are very alike. I have had colitis for 15 years now and still have periods of denial. I had 10 years of hiding it and finally got dianosed 5 years ago.

I can't take meds for my colitis as I am one of the few that is intolerant of everything. And it does affect my life with my kids and my husband when I am flaring as it dominates your life. When I have minimal symptoms then I feel I can cope. I have been in a flare since Christmas and am suffering so I am taking an alternate approach.

I have started taking a probiotic called vsl 3 which is currently giving me bloating and horrid gas but I am hoping that once my intestinal flora has settled that this will go away. So you could try this.

I am also taking fish oil and I do try and eat some anti inflammatory foods like turmeric and sweet potatoes and Manuka honey.

Are you scared to take meds because of side effects? There are a few of us on here that use alternate methods and some have had great success.

You could try rectal meds? I have some predfoam which I will use if I feel that I can't cope anymore.

I am settled in my mind that in the future maybe sooner rather than later that I an going to get my colon removed. But that is my personal choice, and because i have poorly look after myself for the first 10 years, I am aware that things get worse now when I flare, if you look after yourself and keep your disease under control, either through meds or alternate treatments there is no reason you can't live a normal life and not have to think about surgery like me.
Posted 1/29/2010 11:10 AM (GMT 0)
The risk of getting colon cancer rises in accordance with the extant of the disease: the longer and more severe the flares, the greater the risk.

However, like you, if alternative methods did not work, I would live with the inflammation as long as possible. It is either that or go on medications that do more harm to the body than getting the colon taken out.
Posted 1/29/2010 11:40 AM (GMT 0)

subdued said...
The risk of getting colon cancer rises in accordance with the extant of the disease: the longer and more severe the flares, the greater the risk.

However, like you, if alternative methods did not work, I would live with the inflammation as long as possible. It is either that or go on medications that do more harm to the body than getting the colon taken out.

I agree with you about the colitis medicines I had severe side effects. There is a huge worry for me about cancer specially when I am flaring and bleeding lots for weeks on end. I am trying to find something alterative to work for me if not surgery seems the best option.
Posted 1/29/2010 2:35 PM (GMT 0)
Also remember that proctitis doesn't always stay proctitis. It can extend further into the colon and become left-side UC or even pancolitis. Not staying on your maintenance medication increases the chance that this will happen. Flares always start in the rectum and progress upward; the rectum is the first to flare and the last to heal.
Posted 1/29/2010 2:47 PM (GMT 0)
I think we all go through a period of denial when first diagnosed. I did the same thing over eleven years ago. I was hospitalized for eight days and then diagnosed through a colonoscopy. I was placed on prednisone and Asacol. Well, after a period of three months, I felt fine, so stopped my meds. In remission for two years, I suffered another flare and repeated what I did two years prior. Ok, in remission for another two years. Then I suffered a bad flare in 2002. Doctor placed me on Colazal along with the prednisone, but this time I just couldn't seem to get off the prednisone without flaring. I was placed on 6MP. Luckily, my ulcerative proctitis hasn't traveled further into my colon as of yet. The 6MP has not kept me in remission. I have had flares yearly and since May of 08, seem to be flaring all the time. Doctor took me off the 6MP and I am now on Remicade. After the first two infusions I did fine, but after the 3rd suffered either a reaction to Remicade or a stomach bug. We won't know for sure until after my next infusion on the 26th of Feb.
This disease just does not "go away". It's a lifetime sentence. Although a GI surgeon said sometimes, rarely, I assume, it does "burn itself out". I haven't been that lucky.
Posted 1/29/2010 5:20 PM (GMT 0)
I completely sympathize with the denial. I don't completely trust my doctor and feel like if I could just stop being stressed out and more relaxed and maybe stop eating gluten and sugar and wheat I will get better. I have been on and off medications and flared and then gone into "remission" , being in remission with meds feels like I am just delaying the problem. But I must say that blood freaks me out and always gets me down and I feel like it is the sign that I am really sick and need to do something about it.
Posted 1/29/2010 5:36 PM (GMT 0)
My friend Dave went to a Doctor and was diagnosed with U/C. His wife was against going back for treatment and hired a nutritionist. Within a month, he was back to full health and has had no symptoms for over 10 years. Hope this helps.
Posted 1/29/2010 8:12 PM (GMT 0)
So you keep saying. Everywhere.
Posted 1/31/2010 10:30 PM (GMT 0)
Thank you very much for your replies I really appreciate hearing your thoughts and stories and feel that I will force myself not to cancel my appointment as I tend to do.

Thank you!

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