Newly Diagnosed with UC

Hello, UCnewbie02. I was diagnosed with UC back when I was about 13-14 years old. Around 3 years ago a bad flare up struck which no medications I took helped. Almost 9 months after the flare started I opted for surgery and I have no regrets about doing so.

Since then I've lived with an ileostomy and in two weeks I will go in for the reversal surgery to use the jpouch (most people wait around 3 months to 6 months for the reversal surgery. I waited as long as I did because, well, I felt good plus work kept getting in the way). The only complication I had so far was an obstruction. That was my fault though as I thought I could handle fast food three days after being released from the hospital.

Since then, I've returned to being my old self. I can eat what I want and I am fairly active. I take no medications for UC anymore.

I wouldn't say the surgery is a "cure". There are complications that can come about: pouchitis, cuffitis, strictures are some ones off the top of my head. But these are normally easily fixed and don't cause nearly the same amount of pain and issues UC does.

Another good place to get more information is http://ucvlog.com/. Dennis has had a jpouch for awhile now and he has documented basically the whole process, from temp ileo to the jpouch surgery and after. Recently he has been diagnosed with chronic pouchitis, but this is pretty uncommon so don't let that scare you away.

Lemme know if there are any other questions I can possibly answer for you.

UCNewbie,


Welcome to the forum.

Sorry about your recent official diagnosis.



I too was given a choice by my GI: biologics or surgery.

I refused both and found my own way.








Good luck, and I hope you start to feel better soon.

Let us know how we can help you.

Dear Newbie002,

Reviewing your post: you've had UC for approximately 18 months. At diagnosis and hospital admission, just three months ago, it appears that your pan-colitis was life-threatening. Now you're managing the UC at home but not in remission. Elective surgery is being presented as an option, not as an emergency or as a life-saving measure. So you have time to do your research, weigh the benefits against the risks, talk to people with UC (here on the forum), and make an informed decision.

Through the decades, as a nurse, I've observed surgical intervention progress from tool shops (orthopedics) to super-advanced micro-surgeries through scopes. But the psychological impact is still a challenge. When women hemorrhage at child birth, or men have a multi-vessel heart attack, surgical intervention happens in a flash; no time to be an informed consumer. When it is life-threatening, most people are glad to put their survival in the hands of a surgeon.

But when it is not a life-threatening emergency and there is time to consider options, we patients/consumers now have access to an enormous amount of medical information. The following remarks are based on what I've read and understand from the volumes of medical literature on UC. The surgical 'cure' of total colectomy has pretty good success when the patient is young and otherwise healthy. There are options for re-routing the GI plumbing; temporary followed by permanent in 1, 2, or 3 stages. Each option has risks and probabilities of success. From other sectors of literature (public health, infectious disease; surgeons are not all equally skilled and experienced. Additionally, for most hospitals you can look up the rates of errors, infections, and poor outcomes.

The best UC surgical advice ever received - was right after being diagnosed. The young husband of a graduate school class-mate was between surgical stages of temporary to permanent re-routing. But - they went to San Francisco for a second opinion before deciding. He stayed in California for the surgeries because of the sub-specialized GI surgeons were advancing the surgical treatment and improving outcomes for UC. They had an entire department for IBD. My class-mate's advice was this: If my disease ever advanced to needing surgery - Go to a tertiary hospital. Skip the larger regional hospital (lots of specialties), and go to where they refer patients for sub-specialty care.

A book for patients written by an IBD specialist has been another good source of information. At the time of publication, maybe 15 years ago, the lifetime rate of UC colectomy was 1 in 3 persons. However, new drugs are released every year or two, improving the non-surgical medical management options. Some of us fear the surgery and risks of possible unintended outcomes. Some, like my class-mate's husband, will try and exhaust every possible permutation of treatment (conventional and alternative), dietary practices, and other 'healing' methods, before accepting and surrendering to the surgical option. Choosing any of the above is a very personal issue. When desperate for relief; exhausted, ill, not functioning, may or may not be a good time to make 'elective' life-changing decisions.

"I feel almost too well to have surgery, but yet too sick not to".

You may have already come to conclusion of just how ill you are willing to tolerate. When it is time for surgery, you've done your research and are making informed decisions, You Will Know.
Adjustment, preparation, and scheduling can still pose a psychological challenge.

I hope this dialogue helps in finding peace with your decisions,
Denny Rae

Thank you so much for all the feedback! I really appreciate it!

I am definitely looking into all my options and reviewing each option thoroughly. I did have a surgical consult to get more information on the three step procedure, so I do feel pretty confident in what to expect IF I have to go that route, and I feel very confident in the surgeon that I met with. He is very reputable when it comes to colorectal surgeries. I am holding off on the surgery for now, just to continue researching other options. Also, I feel like I could psychologically handle an ostomy bag heading into winter than I could over the summer. I know they can be easy to disguise and you can go swimming and all that good stuff, but I am a beach bum at heart and really don't to have to deal with that aspect over the summer if I don't have too.

At this point in time my side effects from the steroids are causing more problems than the UC, but I just met with my GI doctor yesterday and he said he was going to finally start lowering my dose of steroids, and continue treatment with the 6MP. All my blood work came back and was really good too. I just hope I don't flare as my dosage decreases.

I do want to look into other natural options as well. I have been on a low residue diet for the last couple of months to help my colon heal, and I do probably drink about 5-6 bottles of water a day so I'm pretty good on hydration. I have slowly started to incorporate other foods into my diet. My biggest problem when it comes to diet is hot and spicy foods though. I am one of those people who just can't live without it. So far I've had spicy foods a few times, with no ill effects--so I am happy about that, but I know that is something that will have to be an every once and while treat.

I think it is interesting that with a lot of these diets they promote veggies, salads, nuts etc. Correct me if I am wrong, but I thought a lot of veggies do not get fully broken down until they reach the colon. Wouldn't that be more of an irritant? Especially if you were going through a flare?
I don't doubt the natural benefits of these foods, but based on my knowledge (or lack there of) low fiber foods are best to keep things at bay.

Thanks again for all the feedback! UCnewbie02

Fiber: PreBiotic + ProBiotic = SynBiotic

Hello UCnewbie02,

Glad to hear that you are on the mend and have the 'luxury' of time to explore options. I want to weigh in on the fiber questions in your post today.

"Correct me if I am wrong, but I thought a lot of veggies do not get fully broken down until they reach the colon. Wouldn't that be more of an irritant? Especially if you were going through a flare?"

High, low or no fiber is not just a simple choice; fiber plays a really important role in the complex biochemistry of our bowel. Below, I've compiled a few paragraphs from different articles that can explain some of that complexity. As a vegetarian, I also needed to understand the fiber issue, particularly in the beginning when my gut felt (& looked) like a brewery.

'Dietary fiber is the undigestible part of plants that maintains the structure of the plant.
It includes cellulose, hemicellulose, polysaccharides, pectins, gums, mucilages, and lignins. Although they are chemically unrelated, they all resist digestion by the human body. It is this resistance that makes these fibers important in both the normal functioning and in disorders of the large intestine or colon.'

'From a practical point of view, these components can be divided into soluble, which are highly fermentable by colonic bacteria and thus producing SCFAs and promoting bacterial growth, and insoluble, which are barely fermentable. The proportions of these components of a particular
dietary fiber will determine its physiological and physical functions, and its diverse effects, both in the gastrointestinal tract and systemically.'

'Dietary fiber exerts clinical benefits in IBD, since it has been shown to maintain remission effectively and reduce colonic damage . This is achieved by promoting changes in the colonic lumen of the host; first, by facilitating the production of SCFAs, which are able to modulate the immune response in the different cell types residing the inflamed intestine, and second, by actively modifying the intestinal microbial balance towards nonpathogenic bacteria. At present, it is difficult to establish which of both mechanisms predominates in the beneficial effects exerted by dietary fiber in IBD.'

This leads to the topic of PreBiotics, ProBiotics and SynBiotics, .

'Prebiotics are nondigestible food constituents that benefit the host by selectively stimulating the growth or activity of one or a limited number of bacterial species already a resident in the colon. Some examples of prebiotics are dietary fiber and some types of oligosaccharides. Intake of prebiotics can significantly alter the colonic microflora by increasing the populations of certain bacteria and thereby quantitatively changing the composition of the microflora.'

You already know about ProBiotics, the good bacteria.

'A synbiotic is a combination of one or more probiotics and prebiotics. Prebiotics may enhance the survival of probiotic strains, as well as stimulating activity of the host’s endogenous bacteria. Thus, synbiotics modulate mucosal immune responses and exert anti-inflammatory effects. We are not aware of any trial designed to evaluate potential benefit of synbiotics in IBD patients.'

'In conclusion, the pathogenesis of IBD may be associated with imbalance in the intestinal microflora with a relative predominance of "aggressive" bacteria and paucity of "protective" organisms. Manipulation of the intestinal flora may represent a highly physiologic, nontoxic way to
prevent and treat IBD. Although these strategies appear promising and may be actually useful in specific settings, more studies are are needed to establish the relevance of these therapies.'

Hope this helps to clarify the highly misunderstood basis of the entire food chain.
Ciao, Denny Rae

UCnewbie02 said...
Hi everyone!

I am just looking for some feedback and some advice! I really don't want to live my life going through hospitalizations and flares. I feel almost too well to have surgery, but yet too sick not to.

Thanks! UCnewbie02

Hi UCnewbie, it sounds like you need to find a good medicine to help treat the problem, and then I wanted to ask you if you ever made any dietary changes? When I was diagnosed, I wish the world would have shouted to me about making dietary changes, like doing the SCD diet or Paleo, using natural herbs and supplements to work with the medicine so you get this under control?

I was on prednisone/asacol for months and it seemed like a grim option to get off of medicine, until I started the SCD diet!

UCnewbie,

Since you are asking about ideas on diet modification, I would recommend Paleo.

If you want more info, you can go to this link, for other tips as well:

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.

UCnewbie02 -

welcome and so sorry you had to find this place - but be glad you did

just so you understand, with the drugs you're on, eating buckets of nails all day long would probably not bother you - the drugs are that good - it's a good place to be, just not a good place to stay -

i urge you like so many others have said, take this time when you are feeling good to continue your search for a cut free cure - at least for the immediate future - cutting out part of your body i think is pretty permanent so be absolutely sure that is the way you want to go - i'm going on 10 years, and never once considered the slice & dice - i'm doing well right now and don't anticipate that changing any time soon - what i'm doing is working -

good luck

Hi there i read your post and hope your doing well. I was diagnosed with severe uc at the age of 25. It has been a pretty rough battle and i have been on every medication there is. I have fought the surgery for quite some time but i am now considering it. I have been on the remicade now for 2 years and i works okay. I still take asacal, immuran and ennemas regularly so its an awfull lot of meds. I am 39 now and kind of wish i had the surgery done a while ago, i know many who do very well with it. I think you should wait and see if medications work for you but dont wait as long as i did in hopes it would go away. It has been a long hard battle with this disease and really hard on my family over the years of it being out of remissions. If you are looking into having children talk to your doctor before surgery. Hope it works out for you, and take care of yourself.

s

Thank you for all your responses! It makes me feel a lot more confident dealing with disease knowing that other people were able to find remission! Right now I am currently in remission, but that is mostly do to steroids I imagine. However, my GI doc is still decreasing my dosage of steroids 5 mg every 2 weeks. (I am currently on 25 mg-and I started at 60 mg) I definitely want to try to get my diet figured out before I am taken off the steroids completely. I have reviewed most of the articles that have been posted on this feed, and plan on trying some of the different diets and supplements that were mentioned.

We'll see how it goes!

UCnewbie02
- currently on: prednisone, mercaptopurine