Recently Diagnosed--Many Questions

Hi, Everyone

I'm new to the forum. Been trying to read as many threads as I can, so I don't bore everyone with questions that have already been answered, but I feel it might help me if I get answers that are in direct response to my questions/problems.

A little backstory is this: Have had digestive issues since about the age of 15; I'm almost 33 now. I was diagnosed with IBS and Acid Reflux when I was 15. Didn't have much trouble with the IBS much that I recall; acid reflux seemed to be the main issue.

In 2008, I had a sudden flare of the IBS. I went on a strict IBS-recommended diet and within three months was better...for the most part. Had an Upper GI in 2009 and all was clear--apparently they did not find reflux.

The end of 2009 was very stressful for me, the years before that were too, but 2009 my marriage began falling apart, my grandmother passed away, I lost my job, and then my husband left me three months later followed by a year of high, high emotional distress.

It wasn't until this year, March of 2011 that my symptoms became unbearable. It started with just violent diarrhea but then progressed to blood in my stools. It was only a little at first but it quickly became the majority of my bowel movements.

Unfortunately, I've always been phobic when it comes to stomach ailments. I am an emetophobe (fear of vomiting), so my friends and family often did not take my complaint of stomach ailments too seriously, but I knew something was wrong.

It all came to head when I passed out at home and was taken to the ER and admitted into the hospital. I was diagnosed with Ulcerative Colitis. I'm not sure of the proper terms, but the GI said it was a pretty severe case as my entire colon was just covered in ulcers. I spent eight days in the hospital.

After being released, I was prescribed 10mg of Prednisone but only for a week and Asacol HD (2 pills, 3x daily). My symptoms almost immediately stopped. Bowel movements became normal, the urgency went away, no blood, no pain, and I could eat most anything I wanted though I was still pretty careful.

At the end of June I started Culinary school and in school we have to taste everything cook. It may sound silly, but I feel this is when I started experiencing symptoms again even when I only took small bites of the things I knew I cannot handle.

I wasn't too alarmed, because my GI had told me that I didn't get sick over night so I wouldn't get better over night and that I would have occasional flares and when I did just come and see him. He even told me that I may never get rid of the bleeding. That calmed me down, and so I continued to watch my symptoms but not panic about them.

Well, at the end of July, I felt like UC was starting to interfere with life again and most importantly my school. I made an appointment with my GI thinking it was no big deal and he'd give me some more Prednisone or change my meds, etc.

No. He says I need another colonoscopy. I explained over and over that my symptoms were nowhere near what they were when I was in the hospital. I wasn't even having much diarrhea just mainly urgency and a little blood, but he kept saying, "Well, you should have been cleared up by now." It had only been three months since my diagnosis. I was prepared for having to have a colonoscopy every couple years or even every year but every time I flare? I'm just very frustrated and confused.

So he sent me home with a week's worth of Prednisone and a prescription for a bowel prep. I have yet to do it for several reasons. One, I do not have insurance and already owe a ton of money to his office and the hospital; two, I don't know that I can emotionally take it right now; three, I cannot afford to miss school. And I still don't feel the flare was so bad it necessitated another colonoscopy. My biopsy came back clear when he took one in April. He told me this would not heal overnight and then completely changes his tune and acts like I should have no problems. I don't know what to do.

So now, I'm still flaring with the addition of hemorrhoids which are Hell!

I'll be the first to admit that I'm bad about following a diet. I try but it seems like what works one week doesn't another. I need to exercise but that's difficult when you think you might crap your pants every 50ft.

I was thinking of considering another GI, but since I have no insurance and no money, I am getting samples of Asacol from my GI, because otherwise it is over $800 for a month's supply as I am sure most of you know.

My symptoms are so all over the place. Blood and mucous which usually comes after a lot of gas, mainly in the morning and late at night, then I'd have mostly normal bowel movements just streaked with blood but the urgency has become worse. Sometimes I have the urge to go, I run to the bathroom, and it's mainly gas and a minimal amount of diarrhea, almost like I'm constipated. Now, I have the hemorrhoids and a lot of diarrhea especially after eating or drinking but the diarrhea doesn't last but a couple bathroom trips.

I'm sorry that this is long and kind of scattered. I guess my main questions are should I be very concerned? Is another colonoscopy this soon necessary? As I said, even though I am having a flare, it is NOTHING compared to when I was in the hospital and while I definitely don't want nor will let it get to that point again, I don't think I can handle a colonoscopy every time I flare.

I'm just lost.

Thanks for your time.

-PK-

Wow, this is quite a story. I really think you need another GI and your instinct is that something is not quite right with his take on things. Is there any time in future that you will get health insurance. I'm not clear. Are you still on pred? Have you heard of rectal medications -- Rowasa and Canasa? They work very well to heal the inflammation in the rectum, where the UC starts and where a flare is last to heal. The rectum should be a big focus of your treatment.

personally I think at most you should get a flex sigmoidoscopy -- unprepped. Not a colonoscopy.

Having the urge to go and you can't is the sign of rectal inflammation, not garden variety constipation.

You shouldn't have to tolerate these symptoms, or minimize them, saying it could be worse, i could be passing out and going to the hospital. The current symptoms you have, you shouldn't have to live with them, and of course, untreated they could spiral out of control.

I don't have any advice on the insurance issue... There are those on this board that recommend treatments that are alternative to traditional medicine. I personally don't believe in it.

I'm glad your GI is giving you Asacol samples, but Asacol doesn't do a good job of reaching the rectum. It helps the rest of my colon though. I have pancolitis.

Thanks so much! The three of you who responded thus far have made me feel so much better already. I had hoped I was not out of my mind for thinking this second colonoscopy was hasty.

I'm sorry for being unclear. I am not currently on Prednisone. I was only prescribed it twice for a duration of a week each time.

I've never heard of the rectal medications you've mentioned. I've tried to do as much research as I can on UC and the medications out there, but after a while it became so overwhelming. Plus, my doctor hasn't discussed any such things with me, and he seems to stand firm on not trying any new medication without the colonoscopy. As I said, I don't understand why he "doesn't know what he's dealing with" when I was diagnosed only three months ago especially since the symptoms are not drastically different or worse than before.

And thank you for explaining a little more about the meds especially the rectal ones; just the thought terrified me as I often have trouble with suppositories for the hemorrhoids.

As for my insurance, actually, yes, I will be getting it soon. My estranged husband is taking on a new job and is going to put me on his insurance since we are not technically divorced yet. Forgot to mention that in my first post.

Thank you so much already. I've learned more from you all than the websites I've researched. I had no idea the rectum was where UC starts and the last to heal nor did I know that Asacol taken orally doesn't help that area too well.

Thank you so, so very much. You've given me relief just in those few words. I'm definitely going to go with my instinct and see out a new GI. I don't think mine is bad necessarily, I just think he may be too busy and is not on a very personal level with his patients. He acted like I had been in remission for soooo long and suddenly was having symptoms again, because he said, "I haven't seen you for so long and now all of a sudden!" Really? He saw me in April, a week after my hospital stay in May, a month recheck in June, and then when my flare started in July. I think he is confused.

At any rate, I say again thank you, thank you, thank you. I should have come on this forum sooner. Thank you for taking the time to talk about things that I'm sure are very repetitive to you all.

-PK-

Hello Pirate Kisser, I've got a few (hopefully) helpful suggestions for you.

Do you know how much length of your bowel was diseased with UC at the time of your colonoscopy? You can request a copy of the report of the procedure and a photocopy of the actual camera images taken by the scope (if your doc or hospital has that technology).

Nearly half of the US population is uninsured. So most providers, clinics & hospitals have developed some type of algorithm to reduce or write off your bill based on your annual income. But you'll have to learn to negotiate with the provider, and her/his clinic and your local hospital billing departments. Do this in advance of services rendered - or after if an unpaid bill is an obstruction to accessing needed care.

Do your research on treatment options before appointments and ask the doc to walk you through the options. Remember that most GI docs are more proceduralists and diagnosticians than disease managers with patient education skills.
Negotiate with the doctor directly about options for monitoring & managing your UC that is within your financial capacity. For example - would a less expensive/less invasive sigmoidoscopy be adequate to visualize the length of diseased bowel? With each diagnostic test, ask what s/he is looking for and if clinical observation is a safe alternative (and what are the parameters to be monitored).

Encourage the doc to document when you decline suggested exams & treatments. You might be able to reduce the doctor's fear of being sued for failing to follow the "standard of care" by documenting that you have "declined" recommendations "due to financial limitations." This could help her/him to loosen up and be more amenable to negotiate with you.

For each treatment option you want to ask what the probabilities (%) of achieving & sustaining success are, as well as the probabilities of the risks of side-effects & likelihood of no benefit. And what will it cost ($)? Are there generics or less expensive options? Are there equivalent medications (in effectiveness & price) with lower risk for serious side-effects? Talk about options for plan B, if/when you have a flare-up, or if/when plan A fails to keep symptoms in control.

You and the doc may have very different definitions (criteria) of what is successful (remission vs symptom management), e.g., no bleeding or mucus, no urgency or frequency, no pain, poop is solid, no weight loss, normal blood count and chemistry, etc. Most likely you'll have to define "control" as you go by comparison with previous exams & disease activity.

Bring in your questions in writing and take notes (or have a companion take notes) while you consult with the doc. Start a UC notebook and keep your own record of symptoms, exams & tests, appointments, medications & their effect on symptoms as well as side-effects. Being a good historian of your own health is reassuring to doctors that you will be able to monitor and self-manage within agreed upon criteria.

It is ok to call-in with an update/report of your progress. Ask for a nurse or licensed medical office assistant rather than a telephone-clerical-front office staffer.

Sore butt? Stop wiping with dry tissue. There are several options that allow healing and prevent excoriation of the tender tissue. You can now buy flushable wet-wipes for adults. Aloe vera gel with lidocaine (or similar numbing agent) should still be available at end of summer sales where sun screens are sold. Put a small dollop on tissue, to moisten & soothe as you wipe, blot dry with dry tissue. Use water to rinse off then blot dry with tissue; get a small plastic bottle with a squeezable cap. For the hemorroids - ask your GI doc or her/his nurse if a hydrocortisone suppository or topical cream would be safe, and if you can get a generic Rx called in that is stronger than the OTC options, or samples from the clinic.

These are just suggestions you might try. When it comes to medications - please be careful taking advice from anyone without medical training - including this forum. Unsolicited advise can be really annoying, and at worse, dangerous. Otherwise - consult legitimate sources and weigh the pros & cons.

Hope this helps