Just diagnosed :(

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Shoogashayy
Regular Member


Date Joined Dec 2013
Total Posts : 78
   Posted 12/8/2013 4:08 PM (GMT -6)   
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

Shoogashayy
Regular Member


Date Joined Dec 2013
Total Posts : 78
   Posted 12/8/2013 4:15 PM (GMT -6)   
I am also stick having bloody D a few times at day and night. I often have urge to go but nothing comes but blood

kazbern
Veteran Member


Date Joined May 2010
Total Posts : 8384
   Posted 12/8/2013 4:27 PM (GMT -6)   
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}}}}}
*******************
50 yrs old, IBD diagnosis in spring '01. Proctitis, gastritis, ileitis.
Currently taking Pentasa (3g/day)generic Colazal (96 pills/day), Sulfazine (1.5 g/day), Prevacid, folic acid, vit. D (2K iu), flax seed oil (2 tsp/day), psyllium (1/2T daily), mesalamine enema as needed. Gluten free as of 5/30/11. Colonoscopy found no evidence of inflammation on 8/16/1

garylouisville
Veteran Member


Date Joined Aug 2012
Total Posts : 9088
   Posted 12/8/2013 5:14 PM (GMT -6)   
I also think that your pregnancy may have triggered this. UC is a disease you really need to read up on and be an important part of the decision making process. Since about all the doctors can do is try treatment after treatment until they find something that works you need to speak up in your own voice and let them know what your preferences are. Right now you are on the first chapter of War and Peace.
Lialda 1 pillX2; VSL 1 pillX2; Prescrip Assist Probiotic 1 pill X 2;Vitamin D3;Folic acid; Claritin; Canasa every other night;Levsin&DAO as needed

Discontinued: Robinul; Natural - peppermint oil, Inflaguard (Boswellia), Pepto Bismol, Omega 3 fish oil, Imodium, Beano, Lactaid;Zymactive, Renew Life Probiotic 80 billion, Florastor, DGL, Monolaurin, slippery elm;black cherry concentrate;CCHerbal

Shoogashayy
Regular Member


Date Joined Dec 2013
Total Posts : 78
   Posted 12/8/2013 5:35 PM (GMT -6)   
Thanks I will call and make an appt tomorrow.

miss prim
Regular Member


Date Joined Feb 2013
Total Posts : 93
   Posted 12/8/2013 6:01 PM (GMT -6)   
Welcome to the most supportive blog for UC. UC is inflammation of the colon and probably the absence of good bacteria. The prednisone is to reduce inflammation, but it has terrible side effects. I was on 40 mg/day and with bone density reduction from the prednisone I broke a hip!

Ask your GI if he can put you on a mesalamine. You can apply for Lialda patient support for cost, based on income to Shire Cares Patient Assistance Program at 1-877-9-CARES-9 (1-877-922-7379). Also, you'll need a heavy probiotic to replace the good bacteria. VSL#3 is over the counter, but a heavier dose of probiotic is VSL#3DS which requires a prescription. You can apply for financial help thru the National Organization of Rare Diseases "NORD". You can request an app online.

What I've learned is to not take anyone's advice until you've investigated everything. I was in the hospital last year for 6 wks and they kept advising me to get an ileostomy. I did all the investigation and am now under control. I have other health issues, but the UC is not a problem.....knock on wood!

Good luck

InSoFla
Veteran Member


Date Joined Jan 2011
Total Posts : 4691
   Posted 12/8/2013 6:57 PM (GMT -6)   
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: http://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.
Rx meds didn't help me. But 4.5 mg LDN +Paleo diet +supplements=REMISSION.Protein shakes w/almond milk,Maca powder,L-Glutamine,D-Ribose,chia seeds.VSL#3,K2,VIt. D3,slippery elm bark powder.For more info,my protocol is the 11th post at this link: http://www.healingwell.com/community/default.aspx?f=38&m=1666318
If you have any questions, you can find my email address at my profile.

UjohnjC
Regular Member


Date Joined Nov 2013
Total Posts : 39
   Posted 12/8/2013 8:36 PM (GMT -6)   
I was diagnosed in feb 13 was having bm 40-50 a day blood and mucas was put on lialda predasone tried remicade nothing was working so i had surgery in april 2013 just had my 2nd surgery and 1 more to go reversal in feb 1st surge took out my large int and part of rectum gave me a ostemy bag 2nd surg they took out more reectum and created a s-pouch instead of j pouch out of small int as of right now best disition i could of ever made 2/3 way home
42/m

Ernee
Regular Member


Date Joined Apr 2011
Total Posts : 134
   Posted 12/8/2013 8:52 PM (GMT -6)   
Hi



Adapt.



Always strong.



That is all.
I have a demon inside who wishes evil things upon me. It shows up every time to give me competition against myself. Its a battle against stagnation where I fight to stay alive and... I will win every time.

Shoogashayy
Regular Member


Date Joined Dec 2013
Total Posts : 78
   Posted 12/8/2013 10:27 PM (GMT -6)   
Thank you all so much for this very informative info. This truly is the best place to be. As of now I have been laying in the same spot for hours scared to move because once I get up all the pain will start. I will call and be stern with my dr tomorrow

Shoogashayy
Regular Member


Date Joined Dec 2013
Total Posts : 78
   Posted 12/8/2013 10:30 PM (GMT -6)   
Hi ujohn, any regrets about the surgery? I'm hoping/praying meds with knock mines out

UjohnjC
Regular Member


Date Joined Nov 2013
Total Posts : 39
   Posted 12/8/2013 11:58 PM (GMT -6)   
shoogashayy no regrets at all so far its been rough at times but beats what i was going though by far

Bobpuvel
Regular Member


Date Joined Sep 2013
Total Posts : 98
   Posted 12/9/2013 12:14 AM (GMT -6)   
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!

Shoogashayy
Regular Member


Date Joined Dec 2013
Total Posts : 78
   Posted 12/9/2013 6:56 AM (GMT -6)   
Thanks so much Bob, I actually received the book Friday for the diet

laughingduck
Veteran Member


Date Joined Feb 2010
Total Posts : 538
   Posted 12/9/2013 7:26 AM (GMT -6)   
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!
Current medication: Sulphasalazine 3g/day
Current diet: no sugar, grains, dairy, gluten, squash, low fructose fruit, no preservatives.
Current Supplements:turmeric, fish oil, vsl#3, slippery elm
Tried: salofalk enema and suppository, pentasa enema, fecal transplant, cortifoam, Sulphasalazine, salofalk oral, prednisone, resistant starch, vegan diet, l glut amine, black walnut

Heatherfeatherfun
Regular Member


Date Joined Dec 2013
Total Posts : 24
   Posted 12/9/2013 3:02 PM (GMT -6)   
I was diagnosed in 2011 and today i had bloody stool and im waiting for my doctor to call in bloodwork. Im scared cause i have fears of colonoscopies and i dont want a 2nd one. WHAT DO I DO?!?!?!? my doctor is going to make me get one and im afraid of anethesia

Bobpuvel
Regular Member


Date Joined Sep 2013
Total Posts : 98
   Posted 12/9/2013 6:43 PM (GMT -6)   
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!
Alex. 21 years old. Diagnosed with UC and Sclerosing Colangitis in September 2010.

Strict follower of the SCD Diet.
Full-time College Student with two part-time jobs, somehow making it all work.
Lialda for inflammation.
Ursodiol for liver function promotion. (Last checked: Liver function normal)

laughingduck
Veteran Member


Date Joined Feb 2010
Total Posts : 538
   Posted 12/9/2013 6:48 PM (GMT -6)   
You can always do it without anaesthesia if it scares you. It does hurt though!
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