The Worst Case in All of a Head GI’s 20 Years…

And the Patient is Color Blind and New to UC…

Introduction:

Currently going between 6-11 times, mostly brown waste water with some bits of waste, sometimes ploppy dark waste, blood is variable–mostly small amounts recently throughout day or sometimes skip a day.
Not certain if it is actual ulcerative colitis or crohns colitis and trying to figure out the difference, and doctors are looking at surgery-
Wondering how long it would take the Remicade to work for someone with acute/severe ulcerative colitis–it has only been my 2nd infusion–and what signs to look for in a severe case–that may be signs of hope.
My current GI wants to bring me down to 20mg of Prednisone and keep lowering the dose, do one other Remicade infusion to see if it’s working, if not- recommends surgery

-i have insurance that is limiting my care-

worried about complications—want to prevent
developed Thrush– now taking Nystatin–worried thrush could cause a problem for potential surgery or other treatment

My Story:

When I was in college we used to have this running joke about the cafeteria because every time after eating the school food many of my friends and I seemed to have to use the bathroom soon after. The irony of that statement today.

At that age, I gave little thought to my diet until it really began affecting me. I would drink gallons of soda, fast food, and the greasy cafeteria meals just like others my age. When I noticed the sugar spike and drop after drinking soda was really starting to wear me down, not to mention make me sleepy, I stopped drinking soda.

As a child, I was pretty active, relatively healthy but things stressed me out even at a young age. When I was in elementary school my hair started falling out in clumps. After visiting the doctor, I was diagnosed with alopecia and given injections in my head.(of what I’m not certain). Other than that, and the fact that I inherited color blindness from my grandfather, I never really had serious health problems, never really got sick, or at least anything that was diagnosed.

Despite, the health of my own self, growing up in the 1970’s/1980’s everyone in my family smoked and I existed in a cloud of cigarettes until I was a teenager and the head of the household decided to quit. Seeing the disastrous affects it had upon member after member of my family, a natural disgust for tobacco products developed within and the behavior never took hold of me. I never engaged in drinking, perhaps a total of three times in my life during special occasions and I always regretted it the next day when I developed a mouth full of sores.

Since college I have always been active, playing basketball, moving furniture for people, mowing lawns, and just in general having a presence of always moving around. However these last couple of years I was becoming less and less active due to my work involving sitting at a computer most of the day and then evening when I got home.

In recent years starting in 2006, I attempted to eat healthier, decreasing fast foods, trying to bake more meals at the house.

The thing I think most likely to be the greatest trigger of my new condition is when a close relative died tragically in the later half of 2010 and the stress from that, combined with dealing with an enormous financial situation cropping up was just too much for me and my system.

Around November 2010 is when I first recall having problems with a hemorrhoid. Then I remember having diarrhea (although I can’t recall which came first) and finally seeing blood. I thought the blood was from the hemorrhoid and would eventually subside. I consulted my brother about the situation because he had been having (for years) issues with hemorrhoids and blood on the tissue paper, and his doctor had said they were “fissures” and just to take antacids for them. Initially, that is what I did, for awhile.

However, eventually my symptoms began increasing—more diarrhea, more blood. During the winter 2010, we went on a trip to Florida, the symptoms continued.

Finally in April 2011 everything went out of control, I started becoming dehydrated, exhausted, and going diarrhea up to 9 times a day. After resisting going to see a doctor for so many months I accepted the help from a physician at a clinic who suggested I was dehydrated and had a possible infection in my GI tract and to go to the hospital. At that point I had no choice but to admit there was a problem that needed immediate medical attention.

At the hospital, I thought, with some fluids, tests, and some dosage of anti-biotics and I would be on my way back home. How wrong I was. When I described my symptoms to an emergency room nurse, he theorized it might be a “colitis” of some kind. I had no idea what “colitis” was or what that would mean for me.

What I thought would be a brief hospital visit suddenly transformed into almost a two week hospital stay.
That night in April, I was admitted there, and that’s where it was discovered I had a raging infection of C-diff. Suddenly, I was placed on a liquid diet to try to calm the perceived inflammation (because the situation was too severe to do a colonoscopy at that point) and given several types of specific antibiotics for the C-Diff along with Florastor (pro-biotic). I was also given drugs for ulcerative colitis because they decided that my symptoms were indicative of that.

Finally, the diagnosis of Ulcerative Colitis unknown whether spurred by C-Diff or not, was designated following a sigmoid endoscopy in which they took a biopsy of the tissue.

As the days progressed, still on the liquid diet initiated by the attending physician and staff, I became weaker and weaker on three meals a day of jello, water ice and soup. It wasn’t until members of my family interceded and insisted I receive a multi-vitamin and some substantial food that I began to gain some sustenance back. During that liquid diet period, I developed Inappropriate Sinus Tackycardia and was monitored in the heart ward, and was administered Propranolol at 80mg and 10mg if needed.

After several weeks, eventually, I gained some strength back, some weight, and tested negative for C-diff and was released after having some success with Prednisone at 40mg, Apriso, and mesalamine enemas, along with anti-biotics for the c-diff, and the number of times I was having stools decreased from 9 times to 4 times, with some ploppy “solids” stools for a week and a half, less to no blood, but later on, the solids became smaller again and surrounded by mucus and having some blood at least twice a day.

Around the middle of this past summer, my case was transferred to another GI doctor due to my insurance. It was at this point I went through with a full colonoscopy.

Once again my own expectations would prove to be in sharp contrast with reality. I thought this procedure would reveal a mild-to moderate and “in the process of healing” case of ulcerative colitis, since my symptoms seemed to be at that point stable (still going 4-6 times and watery or ploppy at times but not not changing) but I would soon learn how far from that it would be.

When I awoke from the procedure the first greetings I was confronted with was an accusatory older one of the Head GI doctor in one of the “so-called” “best hospitals” in the region, pretty much saying “why did you do this?” showing me the photographs of the colonoscopy, telling me and I quote “this is the worst case I have seen in all of my 20 years of being a doctor”, this was prior to allowing me to explain my color-blindness.

Everyone seemed to be surrounding my barely private bed-side enclave, including my GI doctor, one of the Head of GI’s, two nurses, and whatever other gawker that could be available at that moment in time, all with looks of agasp of fearful futility on their faces.

With my family entering the vicinity, I sat there petrified, shocked, and shaking as the GI’s revealed their findings. “ Impression: Severe pancolitis with diffusely erythematous, friable, congested, and ulcerated mucosa. No normal mucosa was visualized. Diffuse Pseudopolyps were found in the entire colon. Procedure: after I obtained consent, the scope was passed under direct vision. The Colonoscope was introduced through the anus and advanced to the cecum, identified by transillumination only. The colonoscopy was technically difficult and complex due to severe pancolitis. Codes: Pseudopolyposis of colon, Ulceration of intestine.”

The Head GI doctor suggested my situation was dire, and pushed to have me admitted there immediately. He explained that surgery was really my only option and that even with surgery there could be complications and that after surgery I would probably not lead a normal life and still be going to the bathroom often-at minimum 6 times a day.

I could not believe what they were telling me. It was as if even with the surgery I would not be in any better condition.

My younger GI doctor piped in that there really were not any other options. He said I could do Remicade, but it may not work and there were risks with that. As quickly as he said that, the older GI admonished him, saying it will not work, surgery is the only option, and it must be done quick.

I felt I had no time to think, to take in this life-altering information.

At that point, I felt I was not going to just go ahead and do surgery without knowing more about it. And
It was then I made the decision to go ahead with the Remicade, if that was to be my other choice.

It has been several months back and forth between the hospital and home, I have so far remained at home with a protocol of sorts for dealing with the UC which is currently not effective anymore (or perhaps never was) —including being on 30mg of Prednisone, taking Iron pills, Florastor, and Propranolol for the heart issue due to the UC. And now I am on Remicade at 5mg (have had 2 infusions so far).

After the 2nd Remicade infusion on the 2nd or 3rd day after, I did experience one instance of a firm stool–which I haven’t seen happen since this condition appeared. It was small-the size of a small dinner roll-(sorry about comparison) , but did not break apart, light brown in color. I have only seen that since that day, that one instance, and now I am really only having watery waste.

I just returned from another visit from a different hospital this past week, after having severe cramping (I had never experienced cramping this bad) , loss of fluids, and lower hemoglobin—8.5. While in the hospital I was bumped up to 9.-something after receiving 2 units of blood, and some fluids. I explained to one of the GI’s that my symptoms seemed to be increasing lately, having had a decreased dose of prednisone within the last several weeks—recently having to go 9-11 times, decreased blood at times but increased frequency and urgency. Despite this, I still felt a little more energy and in better coloring than when I was first admitted back in May.

I also asked him if he had seen a case as bad as mine, after showing him the colonoscopy pictures. He said he had, and I then asked him if the Remicade would work. He said it would be a very slow process and he has patients that have been on it for months in order for it to take real effect for a case like mine.
He said he had one patient for whom it did not work, and that patient he referred to another GI at a top university hospital.

Also, he said that my GI should be monitoring me very closely, with actual appointments, not just phone follow-ups –which is what my GI had been doing.  Also, my GI wanted to prescribe Bentyl—anti-cramping medicine over the phone after hearing about my problems with cramping, and when I got to the other hospital and asked about being prescribed that medication, their GI’s said they don’t recommend that to someone in my acute/severe condition, after viewing the images.

At this point, I’m not sure what to believe or in what direction to turn. Every day I am pretty much stuck in bed and stuck at the toilet. I want to get better, get my life back. However, I am concerned about how to go about finding the right GI to help me do that—with having limited insurance. I’m concerned about my colon status and what that means. The GI’s that want surgery for me—is it really that dire and what makes them think so….they were acting like even with the surgery my life would be over—pointless….do I have crohns colitis and they are just not telling me, so that they can do the surgery?

I am confused, I have heard that people who get the surgery and have UC are really satisfied and lead a normal life and yet seemed drastically different.

I am trying to get my medical records so that I can see what their official diagnosis was, and also the doctor’s notes to learn if they were suggesting it was something else in addition to the colitis.  Yesterday, I managed to get some of my records and the diagnosis was listed as “ulcerative colitis, unspecified”.

I really hope I can find the right GI to help me select an appropriate treatment before it’s too late to even get to make a choice.

Right now, I am dealing with a bad case of “thrush” from the immune suppressants and am on Nystatin. It has made me not want to eat, because I have no taste.

When I think about what has happened to me in just a matter of months, it seems unreal. I often think back to my college days and dream of the cheeseburgers and pizza I used to eat every night with complete careless or carefree abandon –whichever way you look at it-, completely oblivious of my future fate.

All the times I had to use the bathroom, after a greasy meal, I sometimes wonder if that contributed to where I am now, or if all along it was just genetically predetermined or brought on due to extreme amounts of stress, or simply caused by exposure to C-diff.

It seems now I spend my time in front of the tv. watching other people’s lives hum along in perfect harmony –they can eat, travel, work, move around, while I can only sit and observe in pain and wonder if I will ever recover. Other’s in worst health shape than I am in can go about their lives, continue to eat horribly, and not have anything like this happen to them. As if that isn’t enough to highlight my condition, other days I experience, what seems to be mocking of me, laughing, when I turn on a tv show to hear a bowel joke or a bathroom reference and I kid you not.

So many things that before I considered, a burden, seem like they would be absolute enjoyment right now.

My questions for UC’er’s

does the tackycardia (heart issue) ever go away?

has anyone had a bad case of thrush that caused a complication-either surgery or other treatment?

Has anyone ever had as severe/acute condition as mine with?-

“Severe pancolitis with diffusely erythematous, friable, congested, and ulcerated mucosa. No normal mucosa was visualized. Diffuse Pseudopolyps were found in the entire colon. Procedure: after I obtained consent, the scope was passed under direct vision. The Colonoscope was introduced through the anus and advanced to the cecum, identified by transillumination only. The colonoscopy was technically difficult and complex due to severe pancolitis. Codes: Pseudopolyposis of colon, Ulceration of intestine.”

Can anyone recommend any good treatments for acute/severe UC? Or good doctors? Not sure where I can go–if I need real expertise in dealing with any complications?

Has anyone ever had any additional infections that caused UC or mimicked UC?

How can a doctor differentiate between crohns colitis and ulcerative colitis? (i wish I could upload my pictures so others could see how bad)

Has anyone heard of any genetic treatments for UC? or any new studies in this realm being done?

 

My Medications:

30mg of Prednisone, taking Iron pills, Florastor, and Propranolol 80mg, 10mg if needed , was prescribed 120 mg if needed, for the heart issue due to the UC. And now I am on Remicade at 5mg (have had 2 infusions so far)
Nystatin for thrush

Submitted by “Brandon Bathroom” in the Colitis Venting Area

 




Ulcerative Colitis Tips


The FREE iHaveUC eBook "Ulcerative Colitis Tips" is made available to all members of the 15,000 person newsletter group INSTANTLY. It is several pages of tips gathered from other people living with Ulcerative Colitis, and has ideas which can be put into action immediately. You will need to enter your email, and confirm the email address afterwards.

7 Responses to The Worst Case in All of a Head GI’s 20 Years…

  1. Chad August 15, 2011 at 6:54 pm #

    Our cases are actually similar…just had an op myself. Too tired to answer all this now. Ping me on Twitter – gattaca8

  2. Tammy August 15, 2011 at 10:41 pm #

    I don’t know what to suggest because I don’t live in USA and never really heard of any of those drugs except for prednisone. – understand how you feel though I got to the toilet 10 times a day and I see blood and mucus and it is watery I long for the day when I will have a normal stool. As for the surgery I thought you should be able to lead a normal life after well as normal as you can get with a bag fitted anyway. I hope you find the right treatment for yourself and your symptoms improve. X

    • Brandon August 16, 2011 at 10:09 pm #

      Thanks Chad and Tammy! I’m wondering what your GI’s said about your conditions and the treatments.

      Yeah, I’m pretty confused about my condition. I’m not certain whether it’s crohn’s colitis or definitely ulcerative colitis because of the severity of the mucosa and the statement about “ulceration of intestine”, and after the colonoscopy the GI’s really made it sound as if I were not going to survive very well, even with the surgery. I’m really concerned, especially since the tachkycardia -heart thing developed. My GI does not really talk to me much about what is happening to me and I’m trying to find a GI who will. thanks for the words of support!

  3. Dove August 16, 2011 at 10:56 pm #

    Hey, I have severe UC (whole bowel is covered in ulcers and 3 diff types of mucus) and I find that my heart goes especially super fast (at one stage the specialists thought I had superventricular tacicardia) but I find that if I have really dehydrated from all the bathroom trips my heart goes crazy. My potassium drops significantly which causes a rapid heart beat and also if you are dehydrated. COCONUT WATER(definitely not coconut milk) has been my life saver. It is expensive but it is natures ‘sports drink’, naturally full of electrolytes and without any sugar or fat so very gentle on your digestive system.

    • Brandon August 17, 2011 at 9:40 am #

      Thanks for the suggestion about the coconut water Dove! I have been using Gatorade for electrolytes but I’m always concerned about the constant sugar content of the drink. One time, my girlfriend (who at one point was a pre-diabetic), tested my blood sugar with her glucose meter and it was 169. Of course, that reading could have been influenced by my medication but I have been searching for a good electrolyte drink without such extreme sugar content, plus an electrolyte drink without all of the food coloring and additives.

  4. uma August 17, 2011 at 1:47 am #

    I have or can i say had pan colitis too and most of the diagnosis after the colonoscopy were the same except for the polyps.The doctors suggested surgery but was against it.I was put on steroids and azoran (imuran) but it lowered my RBC and hemoglobin along with WBC. So i stopped taking that.I started taking a probiotic and some supplements like slippery elm and boswellia. My colitis has been under remission now for more than a year.No symptom.

    My advice is hang in there.The colon is a resilent organ and will start functioning normally again.Try every thing, something will work for you.Each one is different. Be patient, dont go in for surgery in a hurry.
    Good luck.

    • Brandon August 17, 2011 at 11:57 am #

      Thanks Uma! At times, I’ve considered consulting with a naturopath about alternative treatments. I definitely want to pursue other options. Unfortunately, I have felt like I do not know where to turn to find someone willing to take on a severe case. Sometimes I feel I have no control over this whole thing and that some of the GI’s I have encountered are secretly preparing me for surgery without discussing it with me, by lowering my prednisone dose without talking about the repercussions of that.

Leave a Reply