Completely freaked out, help!

If this was me, I would consult with another doctor. Something just does not seem right with your doctor. Also, why do you have to wait a week for colonoscopy results? Is this normal? I know with me, I get the results as soon as I wake up.

I know that I got proctitis/colitis from stress. I do think that foods trigger flares. I take probiotics with no problems at all but sometimes if I eat yogurt, I have problems.

I would talk to a Gastro doctor and a nutritionist. Also, start keeping a food journal. Everyone reacts differently with this disease.

My only symptom thus far is diarrhea. In fact, I think that's why for so long they called it IBS instead of anything else. One bout of mild bleeding about 5 years ago that stopped in a couple of days. No strange blood test results. Even now, bloodwork came back fine except for one slightly elevated level in the liver panel; not the whole panel, just one indicator. My primary care keeps retesting to keep an eye on it and she says it's moving in the right direction and is almost back to normal.

Gastro guy says from looking at the first colonoscopy result, that he would call my case moderate, and that I've probably had it at least 8 to 10 years...(without many symptoms except IBS like symptoms, diarrhea, bloating, lots of gas, urgency and accidents) or treatment (was told eat more fiber, which now seems like a bad idea--doesn't fiber exacerbate IBD symptoms?!) so this is why I'm totally confused and not in a hurry to rush into surgery for something that hasn't seemed so severe yet...

Pluot,

I would say the most probematic symptom was urgency and not being able to wait when the urge strikes. Remember, I've been laboring under the false assumption that this was IBS for years.

Frequency: during good times a few times a day; soft stools occasionalyl normally formed; usually consider it a moral victory to have a soft stool rather than flat out d.

During uncomfortable flares, pray I make it to school (I'm a teacher), know where every rest room is on the way, practice slow rythmic breathing while trying to reach one to alleviate stress, and carry a change of clothes. I go every 15 minutes to a half hour during those flares, sometimes needing to, sometimes all urgency no product. Yes, to mucus in the stool during flares, not blood. Incredible bloating and gas. I become the flatulence queen, often needing to lay down usually on my left side to move the gas through and alleviate bloated feeling... not usually painful but very uncomfortable because it isnt stuck behind anything with the d. Its like I can feel my system misfiring when normally you use the bathroom, you can feel waste moving through top to bottom so to speak... I can feel mine seemingly spasming out of order? Does that make sense?

I've been really happy that the asacol seems to be helping with the urgency and not as much d, but the doctor wasnt as happy he wanted full remission in 3 months. Still have the bloating and gas issues.

Also, I used to occasionally use Immodium when things got really rough. The multisymptom formula worked really well and would give me back a formed stool usually after the first dose. I very rarely ever had to go more than the initial 2 pills.

Dr. told me not to use it so I dont "mask" symptoms while hes treating... I wonder if all the gas is just food related... or can you have IBS and colitis at the same time?

Thank you for the replies. It's nice to know I'm not the only one who thinks things are moving quickly.

Compared to other stories on this forum, my symptoms seem more mild although maybe what the gastro guy is referring to as moderate might be the level of involvement of the colon. In general, do doctors recommend surgery if they find one spot of suspected dysplasia that he wanted to keep an eye on? That is what my guy said he found and why he recommended another colonoscopy only 3 months later. (Besides ulcerative areas and some benign polyps he biopied)

How frequently do people with an ulcerative colitis diagnosis usually have to have a colonoscopy? No fun for sure, and I'm hoping this isn't something I'll have to do every quarter year!

IMHO, it is way too soon to talk surgery. I'm usually the person to say, stop suffering and have surgery, but that's only if you have tried lots of medication and are miserable. Most people "know" when the right time for them to have surgery. I remember thinking, "Ok, I've had enough." I would get a new GI and try some rectal medications. Good luck to you!

You can't always tell by the amount of blood how severe it is....I went on a low frustose diet and had a minimal amount of blood, thought my UC was getting better, but it had actually spread. I agree with everyone - two colonoscopies in three months is too much and jumping from a few months of Asacol to surgery is crazy. Sounds to me like your doctor is trying to make a large profit from you....frequent colonoscopies and immediate surgery.

At one point my UC was classified as "severe" proctitis with possible dysplasia and my doctor wanted to check it in six months to a year. It's "moderate" now, but affected area spread.

Hi happycamper330

Welcome to the UC forum-

An ocurrence of dysplasia was found when I had a colonscopy back in Sept of 2011. My GI followed the AGA guidelines and suggested a total colectomy. This is the recommended protocol for people who have had UC for many years and/or a family history. I chose to wait and have more frequent scopings. I had another after 7 months where no dysplasia was found. My GI still recommends colectomy because that is the standard protocol. BUT the bottom line is that it's my choice and I've decided to wait and see what future scopes/biopsies reveal.

Having spoken to 2 other colorectal surgeons....I've been told that some want to do scoping every 3 months after finding dysplasia so it's not unheard of. Both said a total colectomy was indicated. (They all followed the "party line".)

Your GI seems to be taking a very aggressive approach to treatment. Whether or not you switch to another GI, IMO, you need to do a lot of homework and prepare yourself to discuss various options before deciding on surgery (which is not reversible). Your doc will be less likely to try to "push" you into doing what he wants to do if you challenge him.
(That's been my experience.)

I've been on LDN for 6 months. It's an interesting drug that has the possible potential of cancer prevention. Check it out at websites:
lowdosenaltrexone.org and ldnscience.org. You can read the threads on this forum that discuss people's experience with it.

I feel better going lactose and (mostly) gluten free (also recommended to help with LDN effectiveness.) Probiotics are a major help but some can cause gas. I've had success with Benebiotics.

I live in Westfield, MA and have heard good things about Mass General. The surgeons I spoke to are at Baystate Medical Center in Springfield which is also supposed to be top-notch.
It might be a good idea to find a GI in Boston who is willing to discuss options rather than jump straight to surgery. My GI in Spfld went so far as to prescribe LDN for me.
I will be getting scoped again in 6-8 months.

Here's a link that might interest you.
www.youtube.com/watch?v=nXiwfuvz5HI

Best of luck.

Okay, I have the actual report in front of me now. How do I tell from "doctor speak" how involved this is? Report says, inflamation from anus to cecum secondary to colitis. Findings are improved from previous exam (3 months ago). Areas of prominent (elevated) mucosal islands in the proxima and distal rectum. A localized area of mucosa in the terminal ileum was mildly erythematous.

The inflammation was described in another part of the report as characterized by congestion (edema) erythema, friability, and granularity found in a continuous and circumferential pattern from anus to cecum moderate in severity and compared to previous exam, minimally improved (it's only been 3 months between exams.)

Then it says consider surgical consultation based on biopsies results which are due in in a week but 3 months ago he didn' t find any signs of anything cancerous. What else do you look for in a biopsy that would be concerning?

And he's explained nothing in layman's terms, so I'm at a loss to make an informed decision.

Looking for comparisons out there to see if most people would reasonably consider this treatable with meds rather than surgery which I really don't want to consider since except for controllable diarrhea, I have no other real symptoms in bloodwork, pain, or bleeding. No weightloss (the opposite in fact pc wants me to diet) no enemia, nothing I can think of except for joint aches.

Results come back UC. As far as I can remember I've only had one bout of any kind of bleeding which was attributed to a hemmorhoid. Gastro guy is already talking surgery at this point. He put me on ASACOL 1600MG three times a day for 3 months. He just repeated the colonoscopy, results to be in next Friday. He said overall he's seen some improvement, but not what he had hoped, he wanted full remission, and he's still talking surgery.

Please get a new GI who you can work with. Not all GIs are jerks. Most of the people here have found rectal meds to be very effective. Eating gluten free has helped me tremendously.

I am not lactose intolerant (I eat many things in the dairy family with no problem) but both my daughter (18 yrs) and I get violently ill if we eat yogurt

This could be the Herxheimer (die off) reaction that occurs when large quantities of toxins are released into the body as the bad bacteria die off. It is usually temporary. So when you repopulate the gut with good bacteria at high doses, from probiotics or yogurt, a battle takes place and the body needs to release the associated toxins. This can cause your symptoms.

But if yogurt makes you sick then don't eat it. Everyone's body chemistry is different. There was a recently published article indicating that most people fall into one of three major categories of gut flora. Makes sense if both you and your daughter inherited the same class of gut flora. Maybe you need to switch to a probiotic that is more compatible with your internal flora. And start out with mild doses.

I usually use VSL#3 as my mainstay probiotic but recently went on vacation and could not keep it refrigerated. So I tried Culturelle, which can be stored at room temperature below 75 degrees, and I found it to also be very effective. Different brands for different folks.

You have many 5ASA options....definitely get on the mesalamine enemas.

The doc could add entocort oral and rectal as well before trying the pred.

Surgery is "crazycakes" as fruitgirl put it...lol...good one.

I would nix any foods that would exacerbate any symptoms and yogurt is one of them. Add a good probiotic.

How are you eating in general?

q

You need to tell your primary doc that those things he is suggesting to eat to lose weight make you sick. Geez he sounds like a winner too. You can still eat potatoes and pasta. Cut down on your portion size and exercise. I've lost 25 pounds since the beginning of the year. I really just needed to stop eating so much food. And nix the chocolate which doesn't bother my UC. Hubby got me a stationary bike and I ride it 40 mins at least 4 times a week. My big problem right now is fruits. I love summer fruits and I think the watermelon is giving me problems. <sigh>