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Recently diagnosed with UC

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Ulcerative Colitis
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Posted 6/20/2013 3:54 AM (GMT 0)
Hello, I am a 22 year old, & mother to a 4 year old. I noticed blood in my stool occasionally and ignored it until I had a pain in my side and went to the emergency room. That was when I was diagnosed with ulcerative colitis and had diarrhea for months now. At first I was just annoyed by the frequent trips to the bathroom but gradually it has become more and more painful. I wake up and go to the bathroom around 5 times just in the morning. I constantly have a bubbly stomach and burning. I cant sleep at night without a heating pad for pain. I lost my job because I was a hair stylist and could no longer make it to work on time or let alone give my time to clients without pain or bathroom urgency. I don't want to get out of bed most days and if it weren't for my amazing mother I don't know how I'd feed myself or my son. I don't like driving anymore or grocery shopping with him because I am constantly stopping or rushing us both to a bathroom. I am on sulfasalazine and prednisone. I also take hydrocodone for the pain. It still doesn't do much. I am trying the SCD diet but nothing seems to be changing. I am just wondering if anyone has any words of encouragement or thoughts on how I can stay strong and fight this disease. I feel like its taken over my life and I just want to live happily again. I find myself wanting the surgery just to get it over with. I feel like no one understands what I'm going through. Any advice is so helpful at this time!!
Posted 6/20/2013 3:57 AM (GMT 0)
I think all of us on here know how you feel, kassie. Ulcerative colitis definitely has its low points and i get really angry about it sometimes that its taken things from me. If the drugs arent helping, you probably need stronger ones. What does your gi doctor say?
Posted 6/20/2013 4:02 AM (GMT 0)
I made an appointment with a new doctor today. My current doctor just tells me constantly that its a very controllable disease and then changes my medicine around and I go back and tell him it still hasn't done anything. I'm not a fan of him because I feel like he lacks compassion and just wants me out of his office and back in 6 weeks to try something else. He wrote a letter to my work that I should be better in 3 weeks which makes me feel like he's just brushing it off and doesn't realize it's been months and steadily gotten worse...
Posted 6/20/2013 5:28 AM (GMT 0)
Hi Kassie,
For some of us this disease is controllable, but i think the key is to doing a heap of research, try things out & getting a gastro specialist you trust. I was diagnosed 16months ago just after getting married and had to put a lot of plans on hold. Now, touch wood, things are so much better. Try not to get down and feel like things aren't going to get better.

How was the diagnosis made - colonoscopy? and do you know where about the inflammation is?
Posted 6/20/2013 7:01 AM (GMT 0)
I was like that for a long time too, constantly flaring up I was taking apriso then I switched over to asacol 800 and started taking 40mg predisone, and boom it worked! After about 2 months I was normal after about a 5 year flare up
Posted 6/20/2013 11:57 AM (GMT 0)
Hi there...
You can look up stats on the net, but basically like mentioned before for some of UCers the disease is very controllable with drugs and/or diet and/or supplements (usually a combination).
I understand what you mean when you say the disease has taken over your life and that you feel like getting surgery just to get over this. I know how you feel because last year i was thinking the exact same thing too. It's really tough especially when you have a little kid to look after and it just drags on and on.

The key to this disease is to be open-minded about its treatment. UC is a bit of a blanket diagnosis; meaning UC is probably the symptom of different underlying problems. Could be a food intolerance, allergy, stress, infection, bacterial imbalance, hormonal imbalance...etc. Stress is often, from what i've seen anyway, the only thing that can trigger every UCer and send them into a flare. The type of stress is usually the one where you do not feel in control and feel trapped.

So based on the above: find ways to better manage stress in your life (you need this when you have UC believe me), and try to modify your diet by going gluten free and casein free (SCD still allows dair which i don't agree with unless it is A2 casein dairy), and avoid things (food, environmental etc) that irritate your gut in any way.

It's not easy but don't give up. And listen your body for cues to help you along the way. Try different things one at a time to see if they work. And we're here along the way and you can ask us questions.
Posted 6/20/2013 1:36 PM (GMT 0)
" If the drugs arent helping, you probably need stronger ones."

lololol, I loved this line. If dem drugs don't be helping, get bigger drugs!
Posted 6/20/2013 2:47 PM (GMT 0)
Sorry to hear about your situation, but yes most of us here can relate to very well. You may need to ask your GI about going on something a little stronger as others have mentioned. I would go that route before surgery myself, but at the end of the day that is your decision to make. It also must be tough with a little 4 year old running around but I just have to let ya know it's been done before and I know you can do it. It takes awhile for you to find the right combo of drugs/diet modification that works for you. Good luck in finding that and it is not the same for everyone so be patient. Try some probiotics along with your diet change and hopefully you start seeing some change. Some remicade may also be in your future-don't be afraid of it. Take care.
Posted 6/20/2013 4:33 PM (GMT 0)
Kassie, welcome to the forum.

It would be helpful for us to understand more about your treatment protocol. How much pred are you on and for how long? What is your dose of sulfazine? Where was the inflammation on your scope?

There are standard treatment protocols that have been shown to work really well for many people. Unfortunately, not all GIs use them. I don't know why. Probably the most effective first line treatment for an initial diagnosis is rectal mesalamine enemas plus oral mesalamine at about 4g/day. Prednisone can be used to quickly subdue inflammation but should not be a long-term treatment.

Changing your diet is a great idea to help with discomfort and indigestion. Keeping a food journal will help you understand better what bothers you and what doesn't. The most likely culprits are lactose, dairy proteins and gluten. Lactose is easy to deal with, gluten more complicated and dairy proteins in between, but if you are up for the challenge do an elimination diet and see how it works.

Posted 6/20/2013 4:39 PM (GMT 0)
The truth is it can be a lifelong battle, with horrible treatments which can sometimes control the disease. Unless you are willing to fight a constant battle I think you should opt for surgery and leave this disease behind you. In your case and situation it is probably your best option and is advertised as the only true cure. Many here will encourage you to fight the fight but you have to be mentally prepared to want to fight this disease for the rest of your life. Most of the people who eventually decided on surgery look back and are mad at themselves for not getting their lives back sooner instead of eduring the constant fight against the disease. Most of them have their lives back now and are no longer fighting the good fight.
Posted 6/20/2013 4:43 PM (GMT 0)
It's never a life long battle. It could be as short as 5 years, when the right treatment cure comes along.

If you keep believing ooohhh it's a life long battle....ohhh I'm never going to get better....

F...... this. There the SSI treatment in vancouver that resets the immune system. We aren't in the 1950s here, new treatments will come along.

Everyone can believe what they want to believe though, so go ahead, keep thinking it's a life long battle.

Posted 6/20/2013 5:02 PM (GMT 0)
It's not a lifelong battle for everyone but it is a lifelong battle for most and very expensive to treat. There have been many, many, many people here and other places who have had this disease for decades. All the literature states that there is no cure (other than surgery) and most of the treatments which can bring on remission have significant side effects and often quit working at some point, causing you to have to find another drug further up the ladder with even more significant side effects. I'm all for those who want to fight the valiant fight and hold off on surgery as a last possible resort but the truth is some do not have enough fight in them to do that and just want this disease to be over with.
Posted 6/20/2013 5:12 PM (GMT 0)
It's only a life long battle for ones that do the exact same thing over and over and nothing really changes. You were smart to think outside the box for your first auto immune and where is it now? It dissapeared.

Maybe you can be smart again and find some obscure treatment that will revert the trigger for UC.

I'm a keep trying the weirdest crap and I may stumble upon something. I got nothing to lose.


Sure, someone show me a crystal ball that tells me I'll have zero issues with the surgery and I'll love it...hey man, I got no problem. However, I don't want to end up chasing weird issues why the pouch doesn't want to heal like Boostwis, or other innexplicable bullcrap.

I have nothing against surgery. However we must realise than it is a gamble also. Who knows how you will end up. You know how you are now, you don't know how you'll be then. If you're dying, then yeah get the surgery, lol it makes sense, but in other cases, I think exploration could prove beneficial.
Posted 6/20/2013 6:55 PM (GMT 0)
I'm just trying to make the point that we are all in different mental states. Some of us are willing to fight this disease for decades while others just don't have that capacity and want this disease over and done with. Everything's a gamble but if you don't have any fight in you then in some people a quick surgery is best for your mental and physical health, particularly when the books say that that is really the only cure. I don't recommend surgery to anyone who is mentally strong enough to fight the fight but some just don't want to fight, especially for years and decades, they just want out of the mess. Most of those who did have surgery often kick themselves for not doing it sooner.
Posted 6/20/2013 7:00 PM (GMT 0)
Maybe change the word from fight to manage? and yes, you'll have it forever.

Nothing can fix a colon that's beyond repair even if a "cure" has been found.
But please consider the basics still...and yep, that includes rectal meds. If you've never used them, try...you really have nothing to lose, unless it's your dignity you're concerned about....perspective needs tweaking.

q
Posted 6/21/2013 1:56 AM (GMT 0)
Conquer UC, you say its a blanket diagnosis, but what about in the case of auto-immune issue?
Posted 6/21/2013 12:33 PM (GMT 0)
Some dude- I was fightng the lifelong battle for decades (did have a ten year total med free remission once that was induced by pred alone). After that ended it was certainy not trying the same thng over and over- tried many very different thngs, from chinese medicine (acupuncture nd herbs), diets (veggie, macrobiotic, SCD, and eventually low carb paleo which helped the most), drugs (I reacted adversely to pretty much everything except for pred which I tolerated very well Esp. in lower doses), fecal therapy, multiple worm therapies, LDN, tweaking vitamins, xifaxam, probiotics galore (VsL3 and mutaflor, a boulardi, etc etc), the works. In the end nothing worked except for pred; surgery worked like a charm for me- annihilated the disease- No symptoms whatsoever, no pain, back to living a normal life; not for everyone but all the research and experimentation in the world accomplished nothing for me but delaying the end of my UC. At least I can say I tried though- how was I to know it was a waste of time earlier on?

If one is a good responder to 5ASA drugs, though, I thnk this is a fairly easily handled disease without ever needing surgery. If one happens to be intolerant if all 5ASAs (as I always was), all bets are off unless ones disease is extremely mild to been with.
Posted 6/21/2013 1:48 PM (GMT 0)
A cure could be three years away, forget surgery
Posted 6/21/2013 7:13 PM (GMT 0)
I want to try more serious drugs but if they don't work I don't think I am the type of person to be able to fight this disease for the rest of my life without surgery. Honestly even if I do go into remission I am going to lose my mind if I flare again. I think the thought of never going through this again is more soothing then the thought of going into remission with the chances of having to start all over throughout my life. I never took medicine before and now I am taking 3 prednisone a day. 2 sulfasalazine in the morning and at night. I can't afford to lose any more weight than I already have.... I started at 110 and am down to 98 lbs. I am avoiding dairy and gluten and have been eating a lot of the SCD chicken and carrot soup. I don't even have insurance and my family is helping as much as possible but times are tough with them as well. I have severe moon face from the prednisone which makes me feel horrible as well. I know the doctors use surgery as a last resort but I do think if I could live a normal life with it that it would be the best option. I know stress with me has been a huge factor my entire life and now I'm supposed to stop stressing with ulcerative colitis? Ha, yeah right. :(
Posted 6/21/2013 7:17 PM (GMT 0)

quincy said...
Maybe change the word from fight to manage? and yes, you'll have it forever.

Nothing can fix a colon that's beyond repair even if a "cure" has been found.
But please consider the basics still...and yep, that includes rectal meds. If you've never used them, try...you really have nothing to lose, unless it's your dignity you're concerned about....perspective needs tweaking.

q


My doctor hasn't even mentioned rectal meds to me. What exactly are they supposed to do? I have had constant diarrhea for 3 months... is it supposed to help with that? Because the only pain I have is in my stomach.
Posted 6/21/2013 7:26 PM (GMT 0)
Kassie, do you know where your inflammation is?

Rectal meds treat inflammation in the rectum and sigmoid colon. The sulfazine you're taking won't treat there. Most people with UC have inflammation in the the rectum and sigmoid colon, and rectal mesalamine enemas are a very effective treatment.

Is your pred dosage at 15 mg/day, assuming each of the three pills you're taking is 5 mg? How long have you been on pred?
Posted 6/21/2013 7:26 PM (GMT 0)

Labyrinth said...
Hi Kassie,
For some of us this disease is controllable, but i think the key is to doing a heap of research, try things out & getting a gastro specialist you trust. I was diagnosed 16months ago just after getting married and had to put a lot of plans on hold. Now, touch wood, things are so much better. Try not to get down and feel like things aren't going to get better.

How was the diagnosis made - colonoscopy? and do you know where about the inflammation is?

My diagnosis was through colonoscopy and they said the inflammation was on the left. But the initial pain that sent me to the hospital was on the right side... What kind of foods do you eat? And what is your definition of things being better? I think I must have severe colitis because I am not able to sit up, roll over, move without it irritating my stomach. Drinking cold water will send me to the bathroom with cramps and pain for hours.

I've always gone to the bathroom directly after meals and was okay with that life style. I just considered it normal for me and was a frequent pooper, the pain that has come from UC is what is ruining my life.

I am happy to hear that you are doing better and was wondering how long it took. It's just so scary to me that we have to do all this research and try things and basically treat ourselves. I have an appointment with a new doctor in hopes that I can find one that is a more compassionate and willing to really find the issue and not just keep me on anti inflammatory medicine that clearly isn't working.
Posted 6/21/2013 7:27 PM (GMT 0)
Rectal meds deal with the rectum and sigmoid...depending on if you use enemas or suppositories. Since UC starts at the rectum and heals lastly, using rectal meds are a common-sense approach in addition to the oral 5ASA.

ARe you still on sulfasalazine?

How many times a day are you having diarrhea? Are you also bleeding?

Where exactly is the location of your UC...limited (to where) or throughout?

have you had stool samples done to determine if you have anything else going on?

q
Posted 6/21/2013 7:30 PM (GMT 0)

kazbern said...
Kassie, do you know where your inflammation is?

Rectal meds treat inflammation in the rectum and sigmoid colon. The sulfazine you're taking won't treat there. Most people with UC have inflammation in the the rectum and sigmoid colon, and rectal mesalamine enemas are a very effective treatment.

Is your pred dosage at 15 mg/day, assuming each of the three pills you're taking is 5 mg? How long have you been on pred?

They said my left side was inflamed at my initial diagnosis. I went to the hospital again with a bad episode and was told "my colon is inflamed" but that was just through a cat scan. I take 10 mg of prednisone 3 times a day. I've been on it for like almost 3 months.
Posted 6/21/2013 7:38 PM (GMT 0)
Kassie, please find a DR who can treat you effectively. Being on prednisone for 3 months without a significant improvement in your symptoms is not safe for you, not to mention giving you side effects which are making you more unhappy, too. Your dose of sulfazine is probably not sufficient, either, although this med has potentially unpleasant side effects, too, and maybe you'd be better off with something else.

Rectal meds will absolutely help you get to remission faster. Remission will mean that you won't have diarrhea, you won't have pain, you won't be exhausted. You should be able to return to your previously healthy life.

You should also do your best to learn as much as you can about this disease (see the links at the top of the forum) and about what was found on your scopes and CTs. You can ask the DR to send you a copy of your records.

I am sorry to hear that you are trying to manage all this without insurance. In 100 days you can sign up for insurance through the new exchanges under the Affordable Care Act. I hope you will do that, because this is a chronic illness and it will need to be managed for the rest of your life.
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