Just diagnosed :(

Hi everyone, I was diagnosed through colonoscopy with severe UC almost a month ago. I noticed something was wrong in October when I got severely constipated. I went to the ER 4 times and they kept giving me mag citrate to drink. I took every laxative there was which I think has put me in this terrible flare. My dr started me on flagyl and cipro to calm inflammation. Which didn't work.... I was only getting sicker and dehydrate. I'm on 40mg presnidone taper which started at 60mg. Now in the evening I have severe stomach and rectal pain from going to the bathroom so often with D. I take anucort suppositories also. I haven't gotten any sleep at night or been able to eat anything besides soup for a while. I have lost nearly 40lbs and the worst of this all is I have a 7 month old baby boy that I can barely pick up anymore so I'm totally dependent on my family now for help because I'm too weak to return to work. I call my drs nurse often because I don't see any improvement. I'm really desperate right now for some relief so any advice is really needed. I miss my life before this so much

Welcome to the forum, Shoogashayy. I'm sorry you are so sick!

First of all, please forget about the idea that you caused the flare by taking too many laxatives. No one knows what causes UC, but we do know that it is not caused by laxatives. It's more likely that your recent pregnancy triggered the illness, and that there is probably a family history of UC or other inflammatory condition that made you more susceptible to this illness.

If you are still having frequent bloody diarrhea, I don't understand why you tapered down your prednisone. I also think you should be using rectal mesalamine enemas or cortenemas - the suppositories are not enough to really treat the whole rectum. I think you should make an appointment with your GI to talk about these things. You need to be getting better faster than you are.

{{{{{HUGS}}}}}

Thanks I will call and make an appt tomorrow.

Shoo,

Welcome to the forum.

UC sucks and I'm sorry you have been diagnosed with this terrible disease, and are suffering so, and have to be a part of this terrible club.

As a newbie to the forum, I think it's important for you to know that you have options, which your doc probably won't tell you about. So let me share with you what's worked for me in the hopes it might help you too.

Some meds work for some and not for others.

For me, the traditional meds failed me and the mesalamines I became intolerant of.
And when the doc gave me a choice of surgery or remicade, I balked and had to find my own way.

He also told me diet has nothing to do with UC, but I found that it has a great deal to do with exacerbating its symptoms!

I found that by doing these things it helped control my symptoms by 75%:
1) adequate high intake of vitamin d3 ( need to get your levels checked first)
2) probiotics are key, are you on any?
3) slippery elm powder to coate the intestinal tract helped greatly
4) l-glutamine amino acid powder for long term colonic repair
5) curcumin is an important anti-inflammatory
6) astaxanthin and omega 3's are also important
7) food combining
8) diet modification as in gluten and dairy free, Paleo diet
9) rectal meds help lots of folks out

Despite the decrease in symptoms, I was still BLEEDING very heavily at every BM. The Last 25% was taken care of by LDN, low dose naltrexone, which put me in remission. Within a week of starting LDN, the heavy bleeding ( too many times to count with blood clots and mucuous) which I had had for 1 1/2 years straight, went down to ZERO. And that is all thanks to LDN!

If any of this interests you, there are things IMO that you can control, which will have a direct impact on your disease, the symptoms you experience and their severity.

IMO, it isn't one size fits all, and you have to find what works for you, and it may be a combination of things like diet, meds, supplements, etc...

I was able to control my UC into remission through various supplements, probiotics, diet modification, and LDN , low dose naltrexone.

For more info on the protocol which has put me into remission, please go to this link: https://www.healingwell.com/community/default.aspx?f=38&m=1666318 , and look at the 11th post.

I hope you feel better and let us know how we can help you.

Hi



Adapt.



Always strong.



That is all.

Hi ujohn, any regrets about the surgery? I'm hoping/praying meds with knock mines out

Hey, sounds like you're at the beginning of a path of healing! It's important that you realize there's no short term fix. UC is more complicated than anyone can imagine. The Specific Carbohydrate Diet (SCD) changed my life. I would recommend, if you haven't already, test out numerous recipes from this diet. You must follow it strictly for it to have any chance of making a dent. I love this forum, but YouTube is another great place for information and comfort. Here's a number of channels you can search for: iHaveUC, Sara Ringer, SCDBub is my channel, purplemusUC, IBDeLo, and FiercelyFlaring. Search around and you'll find a whole world of people to relate with and learn from! Happy healing!

I'm so sorry this has happened to you especially with a baby at home :(. I also developed uc while pregnant, something happens to our immune systems when pregnant and after delivery I flared a lot. I did not take prednisone as I was nursing I took mezavant (Lialda) and it helped a bit. It has been a long road to healing (my daughter is 26 months and I am still in a flare, but much milder).
I definitely agree that the scd diet is a good place to start and that's great you ordered the book! One thing about scd is not everyone can tolerate dairy and nuts (I certainly can't). Because of this I actually flared on scd at first! but once I cut out the nuts I saw a rapid improvement within a week. Paleo diet is more what I am on now (good to have a label for the purpose of googling recipes!)
Good luck and I hope you start seeing some improvement soon!

Katie, it could always be worse. The best thing you can do is allow your doctor to analyze your body. It's the only way to know for sure what's going on inside your gut!