Newly diagnosed and very confused

I am a 33 year old mother of two who is newly diagnosed with UC. I have probably had this since age 20 when I first noticed rectal bleeding and told by my PCP doctor that I probably had benign colon polpys.

After my colonoscopy in Jan, it is my understanding that I have inflammation in my rectum, sigmoid colon, and colon. I was given the measurement of 20 cm. I am not sure if that means 20 cm of inflammation, but I think so. Apparently my liver is also inflamed, which I understand usually comes under control when IBD symptoms are brought under control. I have occasional mild pain. I have a good appetite and am very overweight after having my last child seven months ago. I have normal iron levels thanks to daily iron tablets (Feosol Carbonyl Iron), as well as normal Normal B12 and Folate. I am currently breastfeeding and do not wish to stop, but will if I must.

Was on Canasa suppositories, but I will admit, I was somewhat careless about taking them. They seem to stop about 85% of the bleeding, which is my main complaint. I have been in this flare since last April, and it seemed to begin during my pregnancy. At that time I was having 10 plus bloody stools per day.

Current treatment: I can either do the Rowasa enema, or Liadla plus Canasa. I havent been able to retain the enema and it is stressing me out beyond belief. I try to hold it and usually end up writhing on my bathroom floor crying trying to ignore the cramps and urgency.

Here are my questions:
1. One side effect of Lialda is UC, What in the world? Arent I taking this for UC? Is it going to make it worse? Has anyone experienced the rare, but serious side effect of bloody diarrhea that you think is UC but is actually a complication? Im terrified! I have two small children and am married to the love of my life. I dont want to die after taking these pills because I have a bleeding butt.

2. What will happen if I do nothing? Will the ulcers eat through my colon?

3. Has anyone not taken medication and just used the SCD?

thank you for any and all responses to my rant.

wishing you all the best.
One of the side effect of Lialda is

Hi. First of all, you're not going to die. In answer to your questions:

1. Have you taken any Lialda yet? You'd be surprised how many medications are taken for a particular disease that list those very same side affects of the disease. In this particular case, as Kaz pointed out, POSSIBLE side effects of Lialda COULD be diarrhea and cramping but this is technically different than UC. Most don't have those side effects. I certainly wouldn't be afraid to try the Lialda if you haven't tried it yet. If you have, then you should have an idea if it is helping or not or making you worse.

2. In your case and in most cases, doing nothing would be a huge mistake. Chronic inflammation greatly increases your risk of colon cancer, not to mention living with the horrible symptoms of the disease doing no treatments.

3. Some have not taken any meds and just used SCD but those are the very few compared to the millions who have this disease. If you really want to try the SCD I would highly suggest you do it in conjunction with the meds but if it works, that leaves you with a huge dilemma of not knowing if it is the meds which are helping you, the diet, or both. If you go into remission and quit the meds your UC could come back worse than before and the same meds might not work again, requiring you to use stronger and harsher meds the next time. Some of these decisions can be a real gamble. I have always tried to do one new thing at a time so you have a better idea of what works and what doesn't but that's not always possible. Most of us require more than one treatment at a time.

Probiotics is a good idea. Most UC'rs need extremely high CFU counts of 50 billion or more and these probiotics are usually not bought in your average store, mostly online.

With almost any treatment for UC you should be able to continue breastfeeding. You should check with you OBYGN to make sure.

Unfortunately, it's not uncommon for pregancies to bring on or stop UC flares.

Thank you all for your thoughtful and caring responses. I feel so blessed that each of you took the time to respond. I am so appreciative of your time. I am especially greatful that GaryLoiusville mentioned that,

" If you go into remission and quit the meds your UC could come back worse than before and the same meds might not work again, requiring you to use stronger and harsher meds the next time."

Does this mean that whatever course of meds you are on is a life sentence? If I decide to take the Lialda than Im doing Lialda and Canasa for the rest of my days? In that case, I need to choose even more wisely. I tried to extract this information from my doc about the expected course of treatment and he just kept telling me he didnt know and couldnt give me a "ballpark answer." I guess I expected that I could stop the treatment once I got better.

I also appreciate the information on the probiotic and the flax seed oil. I am going to buy some really soon.

Your answers made me feel supported and give me hope. I can stop using this energy to freak out and start charting a course toward feeling my best and staying healthy for my family. Thank you again for your kind welcome and your advice. I am going to see the Nurse Practitioner tomorrow to discuss all my questions and concerns.

Thank you again so much!!!

Yankee,

Welcome to the forum.
As to your questions:
1) some of us ( me included) are intolerant of the mesalamines and so they make us worse
2) You already have inflammation of the liver, so IMO you really have to be careful.
And again IMO you need to change things around and reduce inflammation entirely.
Diet change to Paleo diet ( which is an anti-inflammatory diet), supplements to tamp down the inflammation, etc...
Also, BTW, make sure you get your liver and kidneys tested every 3-4 months as a result of mesalamine usage
3) Scd didnt help me, but Paleo did. Technically I am not on traditional medication. I got into remission through hard work of Paleo, diet modification, various supplements, and LDN.


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.
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...

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 taking certain proactive steps, it put me in full remission.
My steps to remission included: diet modification, various supplements, probiotics, and LDN, low lose naltrexone..

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.

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.

and there have been rumpteen billion folks who have healed and gone off drugs and never returned to this forum, living happy, healthy lives !

only time will till which direction your uc will take -

Just returned to this post to reread your replies and formulate questions for my doctor tomorrow. I really appreciate the different perspectives and experiences that you both bring to the table. I definitely need to ask about the kidney and liver monitoring. Thank you both again!