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Posted 12/20/2012 2:34 PM (GMT 0)
Hi All,

I've been diagnosed with UC this month and I'm doing all kinds of research/learning about this disease. I have couple of questions/concerns.

Here is some history:
For # of years I've been having problems holding (have to go within 5-10 min). Not sure if it's related to UC.
Handful of times I have gotten this deep anal cramp (which is kind of terrifying).
Past 6 months I've been having blood in stool and quite a bit of diarrhea (bloody). Getting chunks of blood in my stool (small, 1/2" inch).
Flare ups (going to the bathroom 5-10 a day)
Growling sounds from my stomach.
Worst part: Not being able to hold it. When I feel it coming I have about 5-10 min to hit the bathroom...and yes there has been # of accidents. :(

These have been my only symptoms so far.

1st Doctor checked for internal Hemorrhoids and took stool tests. I had some kind of bacterial infection which was cleared up/checked again (with antibiotics).

Symptoms didn't go away/got a flare up.

2nd Doctor did endoscopy/biopsy and stool tests. Came back positive for UC so he put me on 10mg x 4 a day Cortisone (steroid).

Symptoms have cooled off. No Flare up and I'm getting blood in the stool 1/4 of the time. Occasional diarrhea but no major flare up.

I just went back for a follow up visit and it kind of started to sink in. Doctor said this is Chronic disease that I'm going to have to live with and possibly control my entire life (there is no cure and to get rid of it requires a major surgery).

He recommended that I tapered off the Steroids over next 3-4 weeks and he said to take Lialda (4 times a day) to simply keep it under control so there is minimal/no flare ups.

He also ask me to get ALL kinds of blood tests done.

I'm a bit skeptical though.
a) I don't believe in taking drugs every day and I'm concerned about the long term effects and other health issues it can create. Now from what I understand this is a pretty mild drug BUT there is quite a bit of risk and also I'm a bit worried cause it seems like it's very new/only been out for 5-10 years.
b) I asked him about diet and effect it might have on me. I did start eating very healthy about 3 months ago and didn't notice any change, but that was before I was diagnosed or took the Steroids. Doctor dismissed the whole diet thing and said this is more of a Immune system disease than dietary. So long story short, there isn't much within my control I can do to control this disease? Or is he just pushing pills onto me?

So I'm trying to cope with all this and keeping a positive attitude. It could've been worse.

Here are my plan for near future.
- Tapper off Steroids
- Watch everything I eat (based on UC diet)
- See how it goes

I'm planning on not taking the drugs he prescribed to me for now and I think I will just see how it will go now that the inflammation is down and I have a better diet.

Kind of planning on doing everything I can within my power to get better and see how bad it becomes and how it effects my life. I noticed certain foods make the flare up worse.

So I'm going to wait it out and if it gets bad again (which doctor says it will) I might have go back to Steorids and consider Lialda medication.

Another thing I wanted to ask/bring up is Mary Jane. First let me say I'm a very occasional Marijuana user. During one of my flare ups few months back, we were going to a concert and I vaporized (I do not smoke it) some and noticed an immediate result. Seems like my mind let go of the cloud that was overhanging over my head and my body just shut down the flare up all together. That day/night I didn't have to go to a bathroom even ONCE (when I was going 5-10 times day before). I tried it a second time and it helped as well. HOWEVER I'm concerned about inflammation Mary Jane might cause (even when vaporized).

I let my doctor know, but he kind of ignored me/laughed it off. It kind of seemed like even though Mary Jane is legalized in CT (very recent) it's still somewhat Taboo.

What's the general consensus on Mary Jane as medicine for this condition?

So I have # of questions for you guys.
1. What can I expect long term when it comes to Ulceration Colitis. Does the disease progress/get worse. What does my future look like?
2. What can I do myself to control the flare ups/symptoms. Diet etc.
3. How risky is Mesalamine medication in general? What other medication should I consider to manage the flare ups.

I guess at the end of the day I have to weigh the symptoms/pain vs risk involved in taking any medication.

Thanks in Advance!!!

Post Edited (ChaoSki) : 12/20/2012 7:55:39 AM (GMT-7)

Posted 12/20/2012 2:36 PM (GMT 0)
i don't think you can say marijuana here - but mary jane or happy backy might be ok ;-)

Post Edited (soystud) : 12/20/2012 7:40:10 AM (GMT-7)

Posted 12/20/2012 2:45 PM (GMT 0)
Edited, Sorry and thx
Posted 12/20/2012 2:45 PM (GMT 0)
ChaoSki,

Welcome to the forum. You should read the forum rules again to make sure you don't go outside the boundaries that the site owner has established.

I'm glad to hear that you're feeling better on the prednisone, and that it hasn't caused you unpleasant side effects.  You should not taper it until you are feeling a lot better, in my opinion, and you should ask your DR some more questions about your condition.

How much of the colon was inflamed when s/he did the colonoscopy?  The answer to this question will be important as you consider your maintenance medication program going forward.  Most of us here will say that rectal mesalamine is absolutely the most effective way to treat UC.  Oral mesalamine is an important tool also, but in the absence of rectal meds will not be sufficient to maintain a remission.  And yes, you should plan to take these meds (which are very safe) for ever.  Very few of us are successful at maintaining remission with diet alone.

Healthy eating is of course an important factor in feeling well in general.  When you have a chronic inflammatory condition you should be considering some additional tweaks to a normal healthy diet.  You should probably add some probiotics. You should absolutely add an omega 3 supplement (I use flax seed oil).  You should probably consider added fiber, like psyllium.

I hope this is helpful.

Posted 12/20/2012 2:52 PM (GMT 0)
If you plan to try a natural approach to dealing with UC, I suggest you read about InSoFla's regimen. It appears in the 11th post under the UC Resources tab.
https://www.healingwell.com/community/default.aspx?f=38&m=1666318

I have used generic (oral) Colazal (balsalazide) and mesalamine rectal enemas for about 10 years with no liver damage or other side effects. They are recommended as good maintenance drugs.
Have never agreed to take prednisone or immunosuppresant drugs.

InSoFla had success with LDN which is mentioned in her post.
You will see from my signature that I use other supplements and have restricted my diet.
My GI doesn't agree that supplements other than probiotics and diet restrictions are helpful but I think he's totally wrong there. He did, however, agree to prescribe LDN for me.
Best of luck :-)
Posted 12/20/2012 3:00 PM (GMT 0)
Thanks, I was actually reading that page now!

Yea, I def want to get off the steroids asap.

As for Mary Jane, Crohn disease is on the list in CT legislature but not UC. Access is a none issue as we already have to get it for our Aunt that has MS (although we are in process of getting her prescription but there isn't any dispensaries in CT yet).

Just wondering if anyone here had success with Mary Jane during flare ups like I did.

Also wondering if lack of ability to hold is one of the symptoms (cause I haven't seen that anywhere). This is probably the biggest issue for me right now.

Blood in stool and going to the bathroom a lot I can stomach, but ALWAYS being within the proximity of the bathroom is a tough one.

I'm also wondering about the future, what I have to face if/as the disease progresses.

Again TIA
Posted 12/20/2012 3:05 PM (GMT 0)

kazbern said...
ChaoSki,


Welcome to the forum. You should read the forum rules again to make sure you don't go outside the boundaries that the site owner has established.



I'm glad to hear that you're feeling better on the prednisone, and that it hasn't caused you unpleasant side effects. You should not taper it until you are feeling a lot better, in my opinion, and you should ask your DR some more questions about your condition.

Only side effect from prednisone was I wasn't able to sleep AT ALL for 2 random nights.I've been lucky.

kazbern said...
How much of the colon was inflamed when s/he did the colonoscopy? The answer to this question will be important as you consider your maintenance medication program going forward. Most of us here will say that rectal mesalamine is absolutely the most effective way to treat UC. Oral mesalamine is an important tool also, but in the absence of rectal meds will not be sufficient to maintain a remission. And yes, you should plan to take these meds (which are very safe) for ever. Very few of us are successful at maintaining remission with diet alone.

It was inflamed A LOT from what he said. Very swollen and he labeled it as "Moderately/Severe UC"

So would you say rectal one is more effective/best way to go?

Doctor recommended oral only.

As for Diet, I'm willing to take a chance and see....Again I'm only 34...I don't want to be taking meds every day :(

kazbern said...
Healthy eating is of course an important factor in feeling well in general. When you have a chronic inflammatory condition you should be considering some additional tweaks to a normal healthy diet. You should probably add some probiotics. You should absolutely add an omega 3 supplement (I use flax seed oil). You should probably consider added fiber, like psyllium.

I hope this is helpful.

This is where I was disappointed with my doctor BUT I have a feeling his recommendation on diet might change once my blood tests come back?

Thanks, VERY helpful, I have to consider all of this.
Posted 12/20/2012 3:11 PM (GMT 0)
If I Knew Then What I Know Now

If I were just diagnosed, I would take the oral and rectal mesalamines and be diligent about using them.
I would definitely take good quality probiotics and adopt diet restrictions (especially gluten and lactose free). Otherwise see what seems to trigger the big D.
Slippery elm helped me to get rid of the feeling of "urgency" after dealing with it for 9 (glorious) years.

If you can get LDN, it's worth a try because of minimum possible side effects. I get it from Skip's Pharmacy in Boca Raton....about $30 a month (not covered by insurance).
Posted 12/20/2012 3:22 PM (GMT 0)
Urgency is a huge symptom, and is discussed here a lot. Accidents too. IMO this is best treated with rectal steroids and then rectal 5-asa (mesalamine). The oral pills like Lialda do not do so well at reaching the sigmoid and rectum.

Maybe Lialda, which introduced a new coating and kind of sponge inside the pill is newer, but the 5-asa mesalamine drug has been around since the 50's. It is related to asprin and historically derrives from willow tree bark.

If you are not one of the few who are intolerant, I would take it for life. To me, this is on a par with taking 81mg of aspirin for life. I take 3 tabs all in the morning, because it was giving me a little restless leg at night.

Basically, while about 2//3 of UC patients get remission or a series of longish remissions, some do not. Symptom wise it can get worse than you describe - much worse. and 2nd flares are often worse than 1st, and drugs like steroids often work less well the 2nd time.

IMO, food is more related to symptoms than to the actual underlying autoimmune - but at some level who cares? Some food is unpleasant with diarrhea - UC or not - and I avoid too spicy. Some food like milk, eggs, gluten, need friendly bacteria in the gut to help us digest. With UC there is generally depletion of friendly gut microbes, so some food intolerance can develop secondary to UC. These may go away with probiotic treatment or during remission. Finding out whether eliminating some of these would help your symptoms? Priceless.

Some link between nutrition supplements (e.g., Omega 3, vit-D, Linoleic acid, butyerate ... etc) and some foods high in anti-oxidant or anti-inflammatory (e.g., spinach) might help not only symptom, but also reduce UC inflammation - but it is not clear they reduce/reverse the underlying autoimmune problem causing the inflammation. More research is needed.

Some focus is on mucosa healing, because leaky gut is what allows food particles and unfriendly bacteria to get into tissue where the immune system over reacts to them. Some folks report symptom management with Slippery Elm supplement, which similar to willow tree bark (5-asa) is anti-oxidant - but it is thick and seems to coat the GI track. Some caution is advised in taking Slippery Elm and Lialda/5-asa too close because 5-asa acts mostly topically.

If you have a lot of blood, get checked periodically for anemia. With severe bleeding, IV iron infusions may be needed.

I find melatonin helps me sleep as well as seems to give some small benefit to lower motility of my gut. There is a literature on Serotonin and melatonin and trypthpan ... etc.

Some also develop IBS secondayr to IBD, and have motility issues over and above UC issues. Occasional Immodium can help both IBS and IBD diarrhea. Lower stress and sometimes anti anxiety meds can sometimes help IBS.

Keep researching.

Post Edited (DBwithUC) : 12/20/2012 8:30:13 AM (GMT-7)

Posted 12/20/2012 3:25 PM (GMT 0)
ChaoSki, to answer one of your questions above, urgency is absolutely a symptom of your UC.

With regard to how much of the colon was inflamed, I should have said - how far up the colon?

If your disease is limited to the rectum, you can probably use mesalamine suppositories. If your disease extends into the sigmoid colon, you will need retention enemas. If your disease goes beyond the sigmoid colon, you will absolutely need oral mesalamine. Oral mesalamine will be useful in all cases, but it is less important for disease in the rectum and sigmoid colon.

Your doctor is like many who avoid discussing rectal meds. I have no idea what their problem is - you should ask him/her at your next visit. Research has shown clearly that rectal mesalamine is extremely effective at inducing remission and as a maintenance med for UC.

The lack of sleep problem with pred can be managed to some extent by taking your whole dose in the morning. If it gets really bad your GI should be able to prescribe a sleep aid.
Posted 12/20/2012 3:35 PM (GMT 0)
Urgency is one of the main symptoms of UC - you're 'lucky' to have a 5 to 10 min window when the urgency sets in. I'm lucky to get 10 secs!!
Posted 12/20/2012 3:40 PM (GMT 0)
Hi ChaoSki,

I have also been DX recently (April 2012) with moderate/severe UC and totally understand your concerns etc. There is alot of information out there and the best thing that i have learned is that not everything works for everybody, and the journey to find out what works best for you is a long one... im no wheres close but here are a few things that i have tried and wether they worked for me or not.

The need to be close to a bathroom is what i mean when i talk about urgency... ie gotta go and gotta go now!!! unfortunatly this has been my life for a while and i think that is the same for most of us! your always gonna have to be aware of where the bathroom is. another thing i have learned :)

1. Have not tried steriods ( too many side affects) - hopeing that i can hold down the fort without them. *fingerscrossed*

2. Asacol - worked OK at first but flared again.

3. Salofalk Oral - started orally and worked to a point still had major issues.

4. Steriod enema - horrible result.

5. SCD Diet - Very strict and hard especially in the begining. Didnt really work for me but others have had amazing results

6. Rectal Salofalk - Best thing i have tried so far :) sucks putting something up your butt but again something that you have to accept with this disease. suggest getting on them!!

Hope some of this helps :)

You may also want to look into having some indepth stool samples again for all different types of pathogens as that was present in the beginning.

good luck and keep us posted!

Posted 12/20/2012 3:47 PM (GMT 0)
"but at some level who cares?"

bingo DB !
Posted 12/20/2012 3:59 PM (GMT 0)

ItsAlwaysSomething said...
If you plan to try a natural approach to dealing with UC, I suggest you read about InSoFla's regimen


With all due respect, why steer all the newbies to insofla's protocol? It is great that she found something that works for her but that is no guarantee that it will work for everybody else. PB4 finds relief with supplements of bee propolis, so why don't you steer newbies to her regimen?

You have found relief by using "generic (oral) Colazal (balsalazide) and mesalamine rectal enemas for about 10 years with no liver damage or other side effects." Good for you and thank you for sharing your personal experience. But why point strangers to insofla's regimen when she doesn't use the rectal meds that worked for you?

Avoiding gluten and dairy might help some people but certainly not for everybody. I eat some dairy every day without problems. The slippery elm that she extols as a panacea substitute for mesalamines causes GERD for me. On the other hand if slippery elm is effective for you then thank you for sharing what helps you and hopefully it will help others too.

I believe newbies should be able to read our comments to them as well as our individual signatures for a diversity of ideas and then decide for themselves which of these options will apply for themselves. That is what signatures are for.
Posted 12/20/2012 4:18 PM (GMT 0)
ChoSki:

-UC is a disease that many have issues with forever, it's very rare that it goes away without a lot of attention to healing.

-Since you are newly diagnosed I wouldn't necessarily berate you for trying natural treatments without medicine, but for most of us that is a terrible idea. The UC progresses, and you will likely get to a point where there is terrible cramping, and 5-10 minutes sounds lovely for holding time since your urge will be almost immediate.

-I wish my doctor would have initially told me to stay away from Non-Steroidal-Anti-Inflammatories like Ibuprofen. They can trigger a flare up or increase symptoms. Use Tylenol instead for pain.

-Prednisone (steroid) can cause extreme moodiness and creates emotions in me that are very bipolar at times. I would cry for no reason and felt hopeless the first time I was on this. Again, my doctor didn't tell me this and I thought I was falling apart completely, and even started an antidepressant and sought therapy.

-Always take the time to consider what medicine you are going to take, but the mesalamines are by far the least potentially harmful of the drugs available for UC. From there you go to immune supressing drugs and biologics which have much greater risks. I've done them all, because they are necessary. If you can maintain with a mesalamine you're going to be in good shape!

-Diet is very subjective depending on the individual. Just pay attention and listen to your body. You'll learn what is not so good for you. The tricky thing is, there are certain days when the bad things don't even have an effect. It's a mysterious battle we're fighting.

Good luck. I tried to keep this simple. There's a lot more to know, but you've found a great resource in this site!
Posted 12/20/2012 4:21 PM (GMT 0)
I would not even consider stopping(not starting) Lialda until I was in a full remission ie no symptoms whatsoever for at least a year. The risk of living with untreated UC far exceeds 5ASA drugs. UC can land you in the hospital and/or cause colon cancer.
Posted 12/20/2012 4:26 PM (GMT 0)
One thing that has not been mentioned is that FMT is a strong candidate (imho) for curing UC. No, it's not been proven in double-blind placebo-controlled studies. But there is enough information avaialble, and enough stories of success, to make this something worth considering. Dr Briggs started a thread wherein he recounts his story of remission (at the least) or being cured (at least, this is our hope).
https://www.healingwell.com/community/default.aspx?f=38&m=2541306
---------------------------------------
LC, 2+ years
SCD 8+ months
no meds
Posted 12/20/2012 4:27 PM (GMT 0)
ya ski, like everyone else has said, take your drugs -

if i was still having issues, i would give some serious thought into some wacky tobacky -

but we can't talk about that here -
Posted 12/20/2012 4:32 PM (GMT 0)

wavey said...
Urgency is one of the main symptoms of UC - you're 'lucky' to have a 5 to 10 min window when the urgency sets in. I'm lucky to get 10 secs!!

You are scaring me :(
Posted 12/20/2012 4:40 PM (GMT 0)
Thank you everyone for your input!!!

Thoreau said...
ChoSki:

-UC is a disease that many have issues with forever, it's very rare that it goes away without a lot of attention to healing.

:(

Thoreau said...
-Since you are newly diagnosed I wouldn't necessarily berate you for trying natural treatments without medicine, but for most of us that is a terrible idea. The UC progresses, and you will likely get to a point where there is terrible cramping, and 5-10 minutes sounds lovely for holding time since your urge will be almost immediate..

My doctor warned me of this.

PS. There has been times where urge was immediate....not lately (since taking steroids)

Thoreau said...
-I wish my doctor would have initially told me to stay away from Non-Steroidal-Anti-Inflammatories like Ibuprofen. They can trigger a flare up or increase symptoms. Use Tylenol instead for pain.

They told me this at the hospital (Yale) the day of colonoscopy (after). And my doctor/nurses stressed it every since. Tylenol ONLY.

Thoreau said...
-Prednisone (steroid) can cause extreme moodiness and creates emotions in me that are very bipolar at times. I would cry for no reason and felt hopeless the first time I was on this. Again, my doctor didn't tell me this and I thought I was falling apart completely, and even started an antidepressant and sought therapy.

I didn't experience any of the above. Just couldn't sleep 2 random nights. Otherwise it's been fine.

Still want to get off of them though....

Thoreau said...
-Always take the time to consider what medicine you are going to take, but the mesalamines are by far the least potentially harmful of the drugs available for UC. From there you go to immune supressing drugs and biologics which have much greater risks. I've done them all, because they are necessary. If you can maintain with a mesalamine you're going to be in good shape!.

Sounds like Mesalamines are pretty minor. So over all opinion seems to be rectal rather than oral.

That should be fine with me. Whatever is better, but obviously will have to find out for myself.

Thoreau said...
-Diet is very subjective depending on the individual. Just pay attention and listen to your body. You'll learn what is not so good for you. The tricky thing is, there are certain days when the bad things don't even have an effect. It's a mysterious battle we're fighting.

Yep. What sucks is that I really like spicy foods....sounds like I will have to start a moderate plan (try things once a month) and monitor symptoms that come after. Gonna have to start a spreadsheet/manage this aspect.

Thoreau said...
Good luck. I tried to keep this simple. There's a lot more to know, but you've found a great resource in this site!

Thanks! I appreciate that.
Posted 12/20/2012 4:43 PM (GMT 0)

kazbern said...
ChaoSki, to answer one of your questions above, urgency is absolutely a symptom of your UC.

With regard to how much of the colon was inflamed, I should have said - how far up the colon?

I believe he said it was inflamed right by the colon/deep on the other end/not rectum.

kazbern said...
If your disease is limited to the rectum, you can probably use mesalamine suppositories. If your disease extends into the sigmoid colon, you will need retention enemas. If your disease goes beyond the sigmoid colon, you will absolutely need oral mesalamine. Oral mesalamine will be useful in all cases, but it is less important for disease in the rectum and sigmoid colon.

I would prefer to start with Rectal since almost everyone seems to have good results with it.

I would prefer to just do that for now...and maybe consider oral as well in the future?

kazbern said...
Your doctor is like many who avoid discussing rectal meds. I have no idea what their problem is - you should ask him/her at your next visit. Research has shown clearly that rectal mesalamine is extremely effective at inducing remission and as a maintenance med for UC.

I think he brought it up but I don't recall. He pushed for Oral ones though.

kazbern said...
The lack of sleep problem with pred can be managed to some extent by taking your whole dose in the morning. If it gets really bad your GI should be able to prescribe a sleep aid.

I'm getting off of these ASAP
Posted 12/20/2012 4:50 PM (GMT 0)
ChaoSki - you must clarify this: "I believe he said it was inflamed right by the colon/deep on the other end/not rectum" and become familiar with the physiology of the bowel.

The names for different landmarks in your bowel are going to be important for your understanding of your disease. I know some people don't want to get technical, but you seem like someone who wants to understand and to analyze their problem. I encourage you to look at wikis or CCFA sites to get some basic knowledge.

At one end of the colon is your rectum, at the other end is the cecum. If your inflammation was at the cecum you need oral meds for sure. If limited to the rectum, the benefits of oral meds become less meaningful.
Posted 12/20/2012 5:14 PM (GMT 0)

kazbern said...
ChaoSki - you must clarify this: "I believe he said it was inflamed right by the colon/deep on the other end/not rectum" and become familiar with the physiology of the bowel.

The names for different landmarks in your bowel are going to be important for your understanding of your disease. I know some people don't want to get technical, but you seem like someone who wants to understand and to analyze their problem. I encourage you to look at wikis or CCFA sites to get some basic knowledge.

At one end of the colon is your rectum, at the other end is the cecum. If your inflammation was at the cecum you need oral meds for sure. If limited to the rectum, the benefits of oral meds become less meaningful.

I will have to put this down on my list of questions to ask the doctor (location).

I see what you mean!!! Chances are they are by the Cecum (but I will confirm) as the Doctor prescribed Orals.
Posted 12/20/2012 5:17 PM (GMT 0)
If you had no inflammation at the rectum I would be very surprised that they came up with a UC diagnosis.

UC typically starts at the distal colon and involves continuous inflammation upward. It can sometimes (apparently) appear at both rectum and cecum with nothing in between. Inflammation at the cecum only would signify (to me, a layperson) a more likely diagnosis of Crohn's.
Posted 12/20/2012 5:30 PM (GMT 0)
I find it fascinating that you were so quick to go on steroids but are extremely reluctant about Lialda. Steroids are very bad news. Lialda is basically nothing. Sometimes Lialda doesn't work and sometimes you can have enough side effects that you decide not to use it anymore but that is very rare and the worst side effects from Lialda are a walk in the park compared to the steroids. In fact, Lialda should be considered as a treatment option before prednisone. Often they are prescribed together and then you wean off the steroid and contine with Lialda to remain in remission. You can use diet and natural supplements and see what happens. Sometimes they work and sometimes they don't but I personally think you are making a huge mistake to worry so much about Lialda. Most everyone can take it forever with no ill effects whatsoever. One thing you may not realize is that future flares often get worser and worser and get harder and harder to treat, requiring you to take worse and worse medications as time goes on so the goal is to do whatever you can to not get another flare and the best way to do that is to take Lialda forever. Believe me, there are even worse meds than prednisone and if you get complacent while feeling better you will regret it very, very much.
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