Transition time

Hi, looking forward to giving & getting help from here, even if just support!

Long story short is I've been diagnosed with UC since 2002 and found that Asacol was all I needed on a regular basis to help keep things mostly under control. Occasional flare-ups would be taken care of by using Rowasa and/or temporary Prednisone. Unlike many, I really didn't sense any negative side-effects from any of these drugs, in fact I found Prednisone would pep me up and make me happy, it was strange.

In March-April of 2010 I endured the most stressful time of my life so far due to stresses at work. Was working 15 hour days even on the weekends and getting very poor sleep. I've always believed and heard that stress can't cause UC, but I know that poor sleep seems to affect my UC.

Since May 2010 I've had a flare that's not responded to Prednisone, Rowasa, 6MP, nor Humira. My main GI felt that I was headed towards surgery but before resorting to that, he sent me to a different GI for a 2nd opinion.

I saw the 2nd GI in early March and he took me off all my meds that day (I was taking asacaol, 30mg prednisone, humira every 2 weeks, and 6MP at that point). Starting March 3, I started ramping down prednisone and ramping up Sulfasalazine; those were the only 2 meds I was on, and I am now on only Sulfasalazine. Generally I can't say my flare up is better or worse than before, and I am assuming that some of the meds that were stopped on Mar 3 may still be acting in my system, whether they're helping or not...

The confusing part is that he felt I may have been overmedicated, that the Humira was not useful for UC, that the asacol may have been promoting my diahrea, and that he thinks I may have "just" IBS. So far he's had various blood tests and a catscan performed, but he has not been able to do a colonoscopy due to a blood clot in my leg that surfaced March 4; I'm scheduled for my 1st colonoscopy with the 2nd GI on June 6.

So I'm approaching 1 year of restricted activity, no sports, no vacations, no long walks away from home while I question whether my current path is going to turn out fruitful - everything I've read about IBS & UC suggests that if there's blood and nightly wake-ups involved, it's not "just" IBS.

I reviewed the SCD diet in December and since then have scaled back my diet to 90% UC-friendly foods and I make a lot of homemade yoghurt. It's seemed to help. I also cut out milk in August. I am going to pursue trying VSL#3 probiotics next. Also, to help me get thru a few important weekends in May & June, I experimented last weekend by doing the colonoscopy prep to clean things out - I noticed in the past that after a colonoscopy, my flare up relaxed for about a week and the blood was much, much less. So far this week my symptoms are half as bad as they normally are and probably by Saturday the bloody diahrea in the AM & PM will return.

So I'm on hold for my colonoscopy with GI#2 until June and I'm getting worried whether I'm headed towards surgery or not. I've not really clued my family in as to how bad my current flare up is; they've usually been fixed in 2-3 weeks since 2002 and so I just didn't burden them with it. I have an appt with my GI#2 today where hopefully he'll give some good news pep talk and and convince me further that he may be onto something, and whether he feels that surgery is a possibility or a very small possibility... Some of the blood tests he's done point to UC or Chrohns so it's not like he's not considering those options. My UC has typically been limited to the very end of my large intestine, per GI#1's colonoscopies...

GI#2 has me on iron & Vitamin D supplements, and although I eat healthy and often, and drink lots of water, I generally feel tired even when I wake up, and once every 6 days or so I feel shaky & not myself, and I wonder how good the nutrients are being absorbed into me... My typical routine is for lots of bloody diahrea in the AM with heavy short-term cramping, then occasional trips to the bathroom at work where mostly water comes out, sometimes some blood, and then at night after 7 I have go to a few times every hour to a degree that's 1/2 as "bad" as in the morning as far as the cramps and blood, etc. Then I usually sleep thru the night but it's not out of the ordinary to have to get up before falling asleep or around 2 or 3 AM to evacuate some water and slight diahrea. I've had completely uncontrollable bowell movements 3x in the past 2 months, where I just had to go there and then, no matter where I was. Luckily both times I was walking by myself a few blocks from home or at work and 10 feet from the restroom. The symptoms really seem to change over time; some weeks are really different than others and I am trying to watch what I eat and take note, in case that may be a factor.

A friend of the family from out of town who is a GI doesn't agree with all of my directions from GI#2, further confusing me.

I would love to hear advice from anyone with any time of similar experiences!

Thanks, AD

Sorry I don't really have any advice for you! I just wanted to say that I hope you get some answers soon, and welcome to the forum! If nothing else, you will get plenty of support here!

Hi AD and welcome!

I agree that the course GI#2 is taking seems confusing. First, I've never heard of surgery being indicated for "just IBS" !! Second, you are right that IBS doesn't come with blood. But on the other hand, I haven't heard of either 6MP or Humira being used for UC so I agree with him there. (Not that I'm any expert or anything!)

If it is UC, then likely the colonoscopy will show activity.

As for the fatigue, have you had your iron checked? B vitamins?

Sulfasalzine does not seem like it would be strong enough to combat your current flare - it's more of a maintenance med. I was on it for years when I was dx with UC. I also used Rowasa to control my flares. Have you tried Cortifoam or Cortisone enemas? Those were also successful for me when the Rowasa wasn't strong enough.

Have you gone back to see GI#1?

What are they doing for your blood clot?

Wow, sorry so many questions! Hope you can get some firm answers from the scope in June and start on the right course of treatment!

-Amy

Welcome Ad! Boy, I can see why you are so confused being that this new doctor is doubting your diagnosis and completely changing your treatment. Though, I hope you don't have IBD, you're symptoms are more than just IBS. For one thing, Blood is not a symptom of IBS and should not be easily dismissed. Hopefully, your upcoming colonoscopy will get to the bottom of all of this. Keep us posted!

Thanks xJillx and amelouise - Just got back from my 2nd appt with GI#2 and I was able to ask all kinds of pointed questions. Turns out he thinks a lot of my symptoms since May 2010 could have been from IBS with UC and not just UC - he doesn't doubt that I have some UC but he thinks I may also have IBS.

Also he took me off all the heavy meds on March 3 and put me onto sulfasalazine just to establish a baseline and start by potentially addressing the IBS component. He feels some of the meds I was on might not have been helping my UC (such as the humira) - he feels I was having the kitchen sink thrown at me and perhaps not the right kitchen sink(s).

And, since I had the blood clot literally a day after my 1st appt with GI#2, his hands are tied until we do the colonoscopy in June... Blood clot is being handled with blood thinners to stop the progression of the clot and allow the body to absorb it.

He says in his entire career he's removed less than 1/2 dozen large intestines - that he's had patients sent to him by other GI's and he's sometimes stopped their plans to have their colon removed, and that the patients controlled their flares via medicine. He was a good cheerleader and although I know I have a disease for life, I'm drinking his Kool Aid for now and feel better now than a few hours ago.

As for food, he says absolutely some foods will promote the diarrhea but feels it won't help or hurt the UC. I think that conflicts with some things I read after which I believed some food can be UC/Crohns friendly or unfriendly. I'm still learning, and will still stay off the milk and pizza and other foods that I think make my diarrhea worse. I'm going to try the VSL#3 even though he thinks it won't cure anything but is another brick on the wall of doing the right things.

Also I was on iron supplements from GI#2 for around 3 weeks and he took me off them today since they may be promoting the diarrhea according to him. I take two B-vitamin supplements and eat really well - perhaps it's the getting up 1-2x a night that is making me feel tired.

For what it's worth, visiting today and asking all kinds of questions has made me feel a lot better. I rarely worry about things and always feel I handle stress well but the past 11 months are really starting to be tiresome. I think it says something if my GI#1 sent me to him, as my GI#1 is pretty well renowned in the area.

He's also given me permission to do the colonoscopy prep (four dulcolax tablets and 238g size Miralax with Gatorade) before any big weekends I have in May & June & July since doing so gives me a few days of gentler symptoms and virtually no blood.

So next step is a colonoscopy in June, and we'll see... I'll keep reading around here. I feel really good right now and haven't gone to the restroom for 3 hours which is REALLY RARE, so even just hearing some positive thoughts has helped.

AD

Hey AD - You sound much better after that appt! Sounds like you understand better what GI#2's plan are and how he approaches things. His track record of "saving colons" is a good one - sounds like you are in the right place!

I once had a GI refer me to another GI, and I really respected him for that. So many docs have a God complex that for one to admit a patient is out of his realm of knowledge is really admirable.

I have read a lot about VSL helping many people. And as for food, your doc probably meant that food can't cause or cure UC or induce or calm a flare, but it certianly has an effect on day to day life.

Good luck, glad you're in a good place right now. - Amy