Emotional Rollercoaster

Introduction:

My name is Will. I am 27 years old and was diagnosed in December of 2010. I have been having a really tough time with the disease as I’m sure everyone can relate. I am really nervous about things and am fearful about what my future holds. I am trying to stay positive but some days it is difficult.

Some more about me:

I am from New Orleans, LA. I am the GM of a large boat dealership. I like sports, hunting, fishing and spending time with my 3 kids and wife. I enjoy playing golf and traveling to new places. I use to really enjoy food, been hard adjusting with that issue, especially in New Orleans having so many great restaurants.

Symptoms I’m dealing with:

I have frequency issues. My symptoms are very inconsistent. One day I will have 5-7 BM and the next I have 15. Mucus, gas pains, severe cramping during bowel movements and have been suffering with nausea lately. Bloody BM as well, this has started going away the last week or two.

Emotional Rollercoaster

Hello to everyone, I have been on this site awhile and finally decided to post. I appreciate everyone’s courage here. I have read a lot of your stories. I finally decided to post mine. I want to thank all of you for sharing what you are going through, it has meant a lot to me and I’m certain countless others.Thanks in advance, and thank you Adam for making this site!

UC has changed my life tremendously. I am already an anxious person, and this disease definitely does not help. I am just fearful of what my future holds. Will I be able to keep my job, travel, spend time doing things with my wife, and children as they grow? I hope so, I try hard to stay positive, some days it is hard when I feel like I am always going to be sick. Things could be worse though, and I have plenty to be thankful.

I had a difficult time with my doctor, he has caused plenty stress in my life. He diagnosed me with UC after my colonoscopy in Dec 2010. I only had symptoms of bright red blood on my stool for about 2 weeks prior. That was my only symptom. I had some blood work done right after the colonoscopy. Two weeks later I had an appoint with my GI, at this point in time the blood had gone away and I felt completely normal. He reviewed my blood work and stated it came back negative for UC. He felt I had a bacterial infection and sent me on my way. I was absolutely ECSTATIC and so was my family that I was okay. Well, obviously that was the wrong diagnosis because here I am with UC.

Trying to keep things short. One year later to the day, December 1st 2011, I had blood in my stool. I could not believe it, I went and saw the G.I again; this time he diagnosed me with Ulcerative Colitis and says the biopsies did show positive from my original scope for UC. I was frustrated and felt very confused about the poor communication. He diagnosed me with proctosigmoiditis and said we should be able to get things under control. I flared for 9 months, blood, frequency, mucus & urgency. I finally had all symptoms disappear in October 2012, thanks to Rowasa enemas.

Only three months later in December of 2012 the flare came back, worse then ever. This time I have nausea, and fatigue as well as previous symptoms. My daughter was born three weeks ago and I would give anything to feel normal during this time. My last GI appointment was a few weeks ago, he reviewed my scope again( the original one from 2010). And now says it is pancolitis. I was really upset, angry and confused. I feel this DR has put me on a emotional roller-coaster. When I questioned him why he initially told me something different his response was simply, “No, it is definitely pancolitis.” Up to this point, I have only tried oral 5-ASA Meds, Rowasa enemas(no longer working and make me sicker). I have just started cortifoam enemas almost two weeks ago, these have helped but still having symptoms. No blood just lots of mucus, sometimes normal bowel movements then just mucus and loose stools. Still having 8 or so BM a day and some cramping. He wants to start prednisone which I am kind of skeptical on taking, and would like to know what to expect and advice or feedback would be greatly appreciated. He also mentioned 6mp or remicade, which I am not willing to try. So I am wondering if I refuse these medications, what other options do I have? I am looking for a new DR as well, The current DR was highly recommended, and I am having a tough time finding a new one.

I am going to start the SCD diet next week, and was looking to try a good probiotic. Any suggestions? Any luck with the SCD, or feedback? THANKS!

Medications:

I am taking Colozal 2 pills 3x daily. Corti-Foam enemas at night. The enemas have seemed quite effective. Rowasa enemas worked a miracle on my last flare, and now only make me worse. Doc wants me to start Prednisone, and 6mp or Imuran. I am definitely reluctant and almost refuse to take these meds.

written by Will

submitted in the colitis venting area




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24 Responses to Emotional Rollercoaster

  1. Chris from Massachusetts April 10, 2013 at 10:18 am #

    Hey Will, I was diagnose in 2011. I am 30 years old. So we are very similar. I have had hundreds of flares. My biggest suggestion to you would be to go carnivore.

    I know you are going to say another diet right? but all I can say is that everything in my experience has shown me that going carnivore works. Everyone always says that they have tried all sorts of diets from vegan, to vegetarian to SCD, but I have yet to hear someone say that an all carnivore diet doesn’t worked.

    I still have some mostly cooked vegetables (some raw but no coniferous), olives, Spectrum Flax Omega Olive Oil (because Canola Oil bothers me), mustard. Liquid Aminos, Salt and Pepper. Read Gary Taubes book Why we Get fat (this is a must read – he has a great low starch/low sugar diet at the end, but again cook most of your veggies) and keep your carbs under 20 grams a day. Be careful of all vitamins (I only take Vitamin D) as they can cause a flare. Your stomach is extremely sensitive.

    No Nuts or fruits sorry – too many carbs and if you are eating all this meat then the insulin spikes will get you in trouble.

  2. Brooke April 10, 2013 at 10:45 am #

    Hi Will:
    I was also diagnosed with pancolitis this past October after having a bad run with a GI doc as well. I started my journey with only proctitis, eventually moved up to grade 2, then was full pancolitis in October. The fact that I had undiagnosed parasites in my system for almost a year didn’t help either.

    Why are you refusing Remicade, 6mp/Imuran? 6MP made me extremely sick, but I know another Colitis patient who was cured by the combination of 6MP and Remicade. They test you thoroughly to make sure your body can handle the effects of 6MP/Imuran. If you can’t, they won’t give it to you. I currently receive Remicade infusions every 8 weeks. About 2 weeks after each infusion, I began to see progress. A GI doc up at the Cleveland Clinic (one of the best in the country for IBD’s) told me that Remicade is the best medical therapy I can currently be on for UC. You should not refuse medicine that doctors are telling you will help. I understand your mistrust after having a bad experience with your first GI, but that’s why you get a second opinion.

    Prednisone does suck. I have been on it for over a year now, tapering up and down. I have had my times where I wanted to refuse it, but my pain, bleeding and urgency were so bad I had no option but to take it. You have to ask yourself what is more important, being on a medicine that may have some bad side effects for a little bit or feeling worse for longer?

    Following a strict diet does help, but you aren’t going to get anywhere fast without at least trying some medicine. I have no problem at all with Remicade and I take 20mg of Prednisone a day. I also take Bentyl, which is a RX form of immodium, which helps with my cramping and frequency. Vitamin wise I take B complex, probiotic, calcium, and iron. During bad days, I will do hydrocortisone suppositories and asacol enemas.

    Good luck finding a doctor-I am currently reading a book that has an excellent chapter on finding a good GI. The book is called “The First Year,” by Jill Sklar. She is a Crohn’s patient and the book is really teaching me a lot.

    • Christine April 11, 2013 at 6:49 am #

      I agree with Brooke…do not completely discount 6MP and/or Remicade. I ended up having to have the j-pouch surgery in Nov. 12, BUT I lived w/ UC for about 4 yrs before that. It was relentless and when 6MP was initially discussed, I said no. But after nothing else helped, I decided to give it a try. I have to say that I’m someone who gets side effects from EVERYTHING, and the side effects I was reading about the 6MP were terrifying. DON’T OVERDO the reading and researching on the internet. It will scare the hell out of you. I ended up being on the 6MP for over 2 years. I had NO side effects, it helped me for 2 years (it could help you for much longer or for good), and I had blood work done on a regular basis to make sure it wasn’t harming my liver (it wasn’t). It’s also dosed based on your weight to make sure they don’t give you too much of the medication. By eliminating the options of 6MP and Remicade (I also tried that, but it was too late for me at that point), you’re possibly eliminating remission. Get a new doctor, talk to him/her, and give it a try.

      • bev April 11, 2013 at 6:56 am #

        This is all fine and nice, Christine…but like you say, the medication (6MP) STOPPED working. This always seems to happen. To me, and this is just my opinion, treating UC with drugs simply does not work. It may help for awhile, but never seems to in the long term. Story after story…does anyone else see this?

        I know it is wonderful when something that the doctor prescribes actually helps. The very first time I went on asacol, it worked! Of course, over time, it stopped doing anything good, and started making me very sick. Alkl of these drugs are, in fact, risky, and you just don’t know the long term effects.

        Cheers
        :)

    • James Turner April 11, 2013 at 4:11 pm #

      I just want to put my info in for consideration. I was originally diagnosed with UC in August 2006. Recently, my doctor stated he believes from reviewing my medical records that I likely developed/contracted UC as early as 1999. However, for so many years I was having BM’s too frequently, averaging 18 to 30 times per day. My worst day was 44 BM events. Due to the frequency and severity of the BMs I was forced into retirment on Nov. 1, 2008. I had bloody stools, mucus, pain, gas, you name it the symptoms were there. On Nov. 1, 2011, I had my first Remicade infusion and continued to get them every 8 weeks until the last one on Mar. 6, 2013. The Remicade, with Asacol changed my life back to almost normal. Now, I am averaging maybe 3 BMs per day. But, the awful happened. I’ve developed an allergic reaction to Remicade. In 4 weeks I’ve had 6 severe swelling events in my face, lips, tongue, throat, and vocal cords. The most severe event occurred on Apr. 1, 2013. My attending physician said that the allergic reactions were life threatening and that I should STOP any future Remicade infusions. I was prescribed Benadryl, Prednisone, and given infusions of another steroid in the ER. I also have been given prescriptions for Epi-Pens. I went for about 16 months with Asacol tablets and Remicade infusions before the allergy arose. My life almost returned to what I would consider normal. But now, having to wait for the Remicade to leave my body, and no telling how long that will take. Each time I leave my home to go anywhere I’m required to take the Epi-pens with instructions that if the event happens (severe swelling) to use the Epi-pens and immediately report to a hospital emergency room.

      I have empathy and sympathy for all of we UC victims. For those that have had to have surgery and part of your colon removed and attachment of a pouch I wish you well.

      Remicade worked wonders for me, UNTIL I developed the allergy to it.

      I obtained medical opinions from at least 4 internal medicine doctors before I agreed to the Remicade infusions. They are great for most UC patients, but unfortunately don’t work for all of us.

      Take care, God Bless and I wish all of you well.

      • bev April 11, 2013 at 9:58 pm #

        GREAT post, James.

        Remicade can work for a period of time….but again, it eventually seems to stop working, due to an allergic reaction.

  3. Reminiscent April 10, 2013 at 11:14 am #

    Hey Will,

    I am also a 27 year old living in the NO area, however I am female with no children. We sound very similar regarding the fear and being an anxious person, and the disease making it worse. I have to travel with work and this is my greatest source of stress and anxiety. I recently requested to not travel and was told I could not be accommodated unless I went through a formal HR process, which I have not yet looked into.

    I too am having issues finding a good GI doctor in this area, and really want to find a new one as soon as possible. I always feel like an insurance claim with my current GI. I wonder if we have the same GI doctor, mine is in Metairie. Regardless, I would recommend getting copies of all of your medical records ahead of time, as it will make the transition to a new doctor more efficient. As an added benefit, you may be able to uncover some additional documented information that he is not clearly communicating. I would be wary to take medical advice from someone who can change diagnosis by reading the same biopsy results. There is a section on this site for recommended GI doctors, and the last time I checked there was at least one listed in our area. However, I do not go to this GI, so I cannot confirm.

    I previously added a post about a week ago and received some feedback regarding vitamins. L-Glutamine and Vitamin D3 were suggested by Bev. I plan to inquire regarding these particular vitamins with my GI. Currently I only take Asacol (800mg 3xday) and started taking the probiotic Align. I recently purchased Breaking the Vicious Cycle and I am going to start the SCD diet in a couple of weeks; once I return from traveling and can make the chicken soup and homemade yogurt. This past weekend I attempted the granola chews recipe from the book…and they turned out very sticky!

    Anyway, my response wasn’t very informative but if it’s any consolation just know that someone else close to where you live is sharing similar fear and frustration. Especially the frustration of it being crawfish season and not being able to have any!! :)

  4. bev April 10, 2013 at 2:01 pm #

    ULTIMATE FLORA CRITICAL CARE by REWNEW LIFE for a probiotic. I take one every day, and I will forever! Best thing I ever tried. (On an empty stomach, and then no eating for half an hour).

    Also, take fermented L-glutamine powder to heal the colon and stop the bleeding. (Also on an empty stomach).

    Trust me. The doctor will never tell you to go the natural route. They would rather prescribe medications that are costly and dangerous. I was on them for 14 years and they either did nothing, or made me even sicker.

    For the first time in 14 years, I feel normal. No more urgency, no more cramping, no more bleeding. No special diet. I ‘go’ once per day, and I eat anything I want.

    Bev
    :)

  5. Natalie April 10, 2013 at 3:05 pm #

    Hi Bev!

    Just a couple of quick questions……does your brand of probiotic need to be refrigerated? I finally found your brand of probiotic at Walmart but it has only 15 billion cultures and it’s a 30 day supply. Another question….did you ever hear of ulcerative colitis causing tooth pain? For the last couple of weeks, I have been experiencing some nasty teeth pains (upper and lower teeth on rt. side). Since yesterday, I have also been experiencing diarrhea/cramps. Any other UC’ers out there experience any of this at the same time?

    • bev April 10, 2013 at 3:53 pm #

      Hi Natalie! How are you?

      Yes, my probiotic needs refrigeration, It is also 50 BILLION cultures, not 15.

      Not sure about the tooth pain. I can’t say as that has happened to me.

      :)

    • Ellen April 16, 2013 at 10:52 pm #

      Recently I read on-line article that researchers in Japan found the co-relation of significantly more bacteria from teeth cavities were found in people with Ulcerative Colitis than the people without Ulcerative Colitis. So it may mean that if you have cavities and more bacteria you have, your ulcerative colitis symptoms may be more than people without these cavity bacteria or more risk of susceptibility to ulcerative colitis. Interestingly I look back past 5 yrs before I was diagnosed with ulcerative colitis, due to stress at work and in my personal life, I was griding my teeth at night while asleep subconciously which resulted in cracking of teeth and resulting cavities. I personaly think it is realted with bacteria. After all peptic ulcers are now caused by bacteria Pylori, which they did not know a few yrs ago and it was thought due to stress and all…

      • bev April 17, 2013 at 6:40 am #

        Yes!!

        Bacteria…for sure!

        :)

  6. J April 10, 2013 at 3:16 pm #

    Have you considered seeing a GI doc at Tulane?

  7. Natalie April 10, 2013 at 4:00 pm #

    Thanks Bev….I knew yours was 50 billion cultures but Walmart carries only the 15. I have been taking 15 billion in another brand anyway so I don’t think it matters too much. Is yours a 30 or 60 day supply?

    • bev April 10, 2013 at 4:20 pm #

      You can get the ones I take in a 30 or 60 supply. It’s a bit of a better deal if you buy the 60s. They DO need refrigeration, though. I don’t imagine that the ones at Wal-Mart were refrigerated, were they?

  8. Natalie April 10, 2013 at 4:28 pm #

    I didn’t see anything about refrigeration on the box. The other brand I bought were from off the shelf BUT they needed refrigeration once I got them home.

  9. sunny cape April 12, 2013 at 12:50 pm #

    Hi there, while I agree with bev about taking natural supplements I, at this point in my life, am way too afraid to give up my meds. I’m on Remicade (Revellex in S.AFrica) and it has changed my life to functional again. It doesn’t make me feel sick and I need to take it only every 8 weeks. I hope and pray that in my case it will continue like this indefinitely. I believe each person’s body is individual so no-one can say what will or won’t work in all people. I take methotrexate as well, once a week – have to say I don’t like this drug as it makes me feel a bit ill but it’s worth it to me as it adds to the effectiveness of the Remicade apparently. I also take, on bev’s recommendation, as well as someone I know here in Cape Town, L-Glutamine and a strong probiotic which seems to keep things nice and even. I’m not sure my L-Glutamine is fermented or non-fermented…. does this make a difference? I’m using the Solal make which is considered good. I need to see if I can get the Ultimate Flora Critical Care Probiotic here. The lady at the health shop recommended that every time I come in to buy my Probiotic I should change it so that the gut doesn’t become accustomed to it and also to introduce new strains to the gut. Any thoughts on that?

    I really feel for you, Will. This is a horrible, confusing disease. At the end of the day the choice is purely yours. For me, I weighed up the quality of my life against the potential risks of taking the drugs and I chose the former. I couldn’t risk trying natural things, alone, as I felt too desperate to come right and have a life again. Who knows, one day, maybe I’ll decide to change that but while the drugs work for me, I’m sticking to them.

    I wish you everything of the very best and lots of healing light coming your way.

    BevL.

    • bev April 12, 2013 at 2:17 pm #

      I do apologize, sunny cape. I hope the remicade continues to work for you indefinitely as well. You’re right…we are ALL so very different. I would love to hear a long term success story on ANY of the meds used to treat UC.

      I do tend to get over exuberant regarding what I THINK that I KNOW (lol) about the effectiveness, short and long term, of meds on UC. I really am only going by what I’ve learned on this site, as well as from others that I personally am acquainted with who have UC and have tried all of the drugs.

      I still am not quite sure of the difference between fermented and unfermented L-glutamine. I just know that fermented the one that I take is made from fermented beets, if you can believe it…and it is vegan. Other than that, I know that fermentation equals good bacteria.

      As for introducing new bacteria into the gut…again, I’m not sure on that. I just know that that Ultimate Flora probiotic does wonders!

      Bev
      :)

  10. sunny cape April 13, 2013 at 3:01 pm #

    Thanks Bev. I’m going to see if I can get my hands on Ultimate Flora… and hope that things continue to go well. I guess there are no guarantees in life with regard to anything. All we can all do is hope for the best!

    Go well :) xx
    SunnyCape

    • bev April 13, 2013 at 3:25 pm #

      Well put!

      :)

  11. Ellen April 16, 2013 at 11:14 pm #

    Hi Will:
    Ulcerative Colitis takes a toll on you, emotionally and physically, andI can completely relate your feelings of not knowing what the future will be like. I certainly feel if I would be able to hold a job steadily, in my case will I still be able to get married, have children…etc.
    My confidence and everything else went down the drain and my happniess level went down further because I was largely affected with chronic illness, UC.
    I am currently taking Prograf, which is better vesion of Imuran for almost 10 months now, and I stopped long commute, by moving closer to work because it was taking a toll on my body. After settling down with my new move and all, my doctor and I are dicussing going off the medicine to see how my body would react because I dont want to be taking immuno-modifier for a long period of time.
    I was also told by taking immuno-modifier, my anti-body to certain antigen can disappear by taking immuno-modifier for longer period of time, so I hope whatever I was reacting to my older environment, causing vicious cycle, my immune system was reset. For right now, for sure the medicine Prograf gave me a normal life than before, I dont have any more pain, no need to be on a diet (I dont eat fried food but I eat bacon, chocolate, salad, bread, butter, cookies…and I tried to eat fish several times a week.) It also gave me some time to look for a better surgeon when there is time that I need one. I guess for you pehaps you could find a better and more capable doctor you can trust, and try a medication for a little while to see if it makes your QOL better. When I was going to bathroom 20 times a day being hospitalized, one doctor told me, there is always a day that I would feel much better the day would always come. Good luck.

  12. Lynne April 17, 2013 at 5:09 pm #

    Ellen,

    I also tend to agree that uc is bacterial related. Have you heard about oil pulling? You might find it interesting. It’s something I’ve been experimenting with off & on. I know there’s at least one dr out there who believes that all disease begins in the mouth. Oil pulling is a simple & inexpensive way to draw bad bacteria out of the system.

    lynne

  13. sunny cape April 18, 2013 at 12:03 am #

    Hi, could you explain more about oil pulling – what exactly is it , how does it work. Maybe I’ll try it. :-)

  14. James Turner June 20, 2013 at 11:01 pm #

    I was diagnosed with severe UC in 2006. Due to the frequency and severity of the UC restroom visits I had to retire on Nov. 1, 2008. I haven’t been able to return to work since. I had to go to the restroom over 20 times per day. The worst day was 44 times between 6:00 A.M. and 10:00 P.M. that night. I’ve been taking Mesalamine 400 MG 3 to 4 times per day since then. In Nov. 2011 my doctor had me begin infusions of Remicade every 8 weeks. The Remicade had fantastic effects with me my daily restroom visits reduced to less than 10/day. However, I began having allergic reactions to the Remicade infusions in which my tongue began swelling severely. That reaction was actually initially on Dec. 31, 2011 but thought it was a reaction to another med that I was taking. Again in March 2012 I had a much more severe swelling of my tongue, throat, and face. Again, the medical professionals thought it was a reaction to another med. I continued to have the Remicade infusions every 8 weeks throughout 2012. I had minor events of tongue swelling but was able to treat the swelling with Benadryl. Then, I had another Remicade infusion in mid March, 2013. On Apr. 1, 2013 I had the most severe allergic reaction ever. My tongue, face, neck, throat, vocal cords were swollen so severely I could not talk or swallow. My attending physician at the hospital told me that I had a “life threatening event” and should never again take Remicade. I have NOT had a Remicade infusion since March 2013 but now have hives at various places all over my body and more than twice weekly I have swelling of my tongue or lips. My attending physician and an MD allergist both attribute these allergic reactions to the Remicade infusions. I’m curious if any of you UC patients have had similar events. If you have, how long do they last? I’m now on my 4th month without a Remicade infusion. I’ve begun having hives, also according to my doctors as an allergic reaction to the previous Remicade infustions. The hives appear in different places on my body almost every day. They are swollen and itch very badly and are painful. I’m now being evaluated to try some different meds. I thank all of you for your comments and letting others know of your successes or lack thereof regarding UC and your different meds. It is a terrible illness and has absolutely negatively changed my life. Thanks for your inputs.

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