Newly Diagnosed and Still Dealing With All the Problems

Introduction:

I was just diagnosed 2 weeks ago.

What is interesting is that I was originally diagnosed with H Pylori infection. I was vomiting non stop, had diarrhea, cramping, and was completely worn out. Went through that treatment (2 weeks of mega doses of antibiotics and Prilosec), but continued to decline. I lost 25 pounds in less than a month.

My primary recommended a GI she had worked with in the past as the GI from their group was – to say the least – condescending and rude. So the new GI looked at the weight loss and H Pylori diagnosis and said you need and Endoscope and Colonoscopy NOW…yeah…because that won’t freak someone out! And was in the hospital in the morning being prepped for yet more tests.

When I woke up – the doctor came in and said you have UC. I was literally in recovery and my husband was googling it from his phone. He said “OMG this is everything that has been happening to you for nearly 2 years…we can treat it…you will get better”.

Questions I’m Having:

While the doctor answers any questions I have without hesitation and with what can only be described as “gentleman like candor”, I still don’t feel I understand what the heck is happening to my body.

Will I start to feel like a person again? Is there hope of not running to the bathroom like a child being potty trained?

When will the medication start to make a difference in the pain and stools?

At what point do I start to question if the medication is working?

Is there any place to start with regards to a diet? How do I know that one diet is better than another?

Should I see a nutrionist? Should I be concerned that I am still losing weight versus gaining back or at least maintaining?

What are some pointed questions I should be asking of my doctor? Should I seek a second opinion?

How do I find information that describes what to look for? I have had the cramping and diarrhea for so long off and on that I am curious as to what I should look for now. Are there other symptoms I have missed because I didn’t know what to look for?

What does my doctor mean by remission? Should I be concerned that he used that term or is this just a term to describe when I am not in the condition I am right now?

Are there specific types of foods to avoid while on the medications? Are there foods I should just plain avoid altogether?

Are there a variety of treatment options if the current course doesn’t give the desired results? I have been told I will be on this course for approximately 4 months – does it always take that long?

Will I eventually feel comfortable about this diagnosis?

 

Patti

 

Submitted in the Colitis Venting Area




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7 Responses to Newly Diagnosed and Still Dealing With All the Problems

  1. Matrix November 28, 2011 at 5:54 pm #

    Hi Patti,
    The SCD diet is the place to start. My advice to you stay on it and don’t quit. Read what hundreds of people say: http://www.amazon.com/Breaking-Vicious-Cycle-Intestinal-Through/product-reviews/0969276818/ref=dp_top_cm_cr_acr_txt?ie=UTF8&showViewpoints=1

  2. Shirley NZ November 28, 2011 at 6:41 pm #

    I can relate to just how you are feeling. Be assured you will start to feel better than you are right now, but you will have to be patient. I was diognosed in 2009 and was asking the same questions as you. The last 2 years I have had time in hospital, but not this year thank goodness. I keep a diary of what I eat, and try to eat pure foods that dont have artifical flavourings etc. Last year, ( my 2nd yr of UC) I was so sick I thought I was going to die, then earlier this year I slowly improved and felt like my old self again, poos were normal once a day it was so good. I eased myself off all the meds…… mistake, it slowly cralled back again. I am back on the meds and am feeling a lot better and have managed to keep out of hospital didn’t have to restart the steroids. Hang in there patti, it does get really bad and you think this is the life forever, but your remission will come. There is no cure for UC and it is not known why we get it. We do know it is a breakdown of our immune and we destroy ouy own good bacteria. But why??.I am also taking slippery-elm, good for the digestion, and am going to start on some probiotics, and try to help get the good bacteria going again.
    Shirley

  3. Jeannie November 28, 2011 at 7:36 pm #

    Hi there Patti. I’m sorry to hear you have been so sick. I have had UC for 2 years now and in remission after a terrible flare up over the summer. First thing I would like to tell you is, YES seek a second, maybe third, opinion. Keep going through doctors until you find one you are comfortable with. I was seeing a GI at the highest rated office in my area and was not happy. I am on my 2nd GI and am very please with him. He has answered all my questions and taken a great deal of patients with me. He, personally, has called me twice to see how I am feeling. That alone says a lot to me.
    There are many options as far as treatments. There are many diets and medications. Again, a good GI will know what is best for you. Remission is a slow processes, and sometimes so are the treatments.
    Diets are different for everyone. What you might be able to eat, others may not, and vice versa. As far as I know, as a general rule, low fiber, low residue diets. Stay away from raw fruits and veggies. Bananas, peeled apples, ripe melons are ok. Nothing greasy, fatty, spicy, fried. I would talk to a dietician or nutritionist.
    Looking back, I had so many other symptoms, but didn’t connect anything. I have severe joint pain, light sensitivity,skin lesions and always had canker sores in my mouth. Not knowing,until I started reaching and reading, those are all symptoms of UC.
    There is light at the end of the tunnel. I was hospitalized for 24 days this past summer. I am finally feeling normal again. Do your research. Read, read, read!!! This is a great site. It’s nice to hear what other people are and have gone through. We can all relate.
    Please make sure that if you are not happy with your doctor, get another! You have to be comfortable with your doctor and trust him.
    Good luck with everything. Feel free to email me if you have any more questions, or just need an ear.

    Jeannie
    jmtips1980@yahoo.com

  4. JamieIsLame
    JamieIsLame November 28, 2011 at 8:18 pm #

    wow, um… I don’t really know what to say, but i’m going to try.
    I’m pretty new to this UC business too, I was diagnosed nearly 3 months ago, and finding this website was my saving grace!
    seriously, stick around here and you’ll be fine!

    the questions you asked, you really need to ask your GI.
    The medication thing is different for everyone, some people are just started on Asacol and Enema’s or something like that, or some people are started on asacol, enemas, and steroids (hydrocortisone or prednisone usually)

    when I was first diagnosed, I was put on 3000mg of pentasa daily and 20mg of hydrocortisone 3 times a day intraveniously (because I was in hospital with a PICC line in), then changed to 40mg of prednisone orally 1 time a day (i used to not be able to swallow tablets, so you should have seen my face when they handed me 8 of them at once!!)

    It took 4 days for me to start to notice any change, but the changes were horrible! I started getting immense pains in my stomach, a swollen stomach, at one point I was even sent to x-ray to rule out toxic megacolon it got that bad! and severe edema in my leg which has left me with terrible strecth marks, so just because the drugs are working, doesn’t mean the pain will go away!

    It was 3 full weeks before the swelling was gone and anything got a bit normal, but 3 months later I’m still having blood in my stools and pretty infrequent bowel motions (however, it’s usually only 1 a day, and I was going like 30+ times a day, so yes, there’s a good chance you’ll stop running to the toilet every few minutes!)

    Also, you will totally become comfortable with it after a month or two, it’ll become a part of you, a part that you wouldn’t change for the world, because trust me, you’ll find so many awesome people with the disease that you would have never known otherwise, and you wont regret any of it for a second.

  5. Rebeka
    Rebeka November 28, 2011 at 11:31 pm #

    Hey Patti,

    I’m pretty new too and one thing I can tell you for sure is that the answers to a lot of those questions are different for every person.

    It seems that many people reported trying a couple medications until it worked. For me it was the second one. The first one had no effect after two weeks, the second one made me feel better after eight days.

    I was wondering too, if I would ever feel like a person again. Today was the first day I was back at work/school (student teacher) and I felt LIKE A NORMAL PERSON! A weaker and more tired version but normal.

    Oh, about the weight: I was extremely concerned about that too! I lost weight when the flare began, then I was diagnosed about five weeks later, and was still losing weight three to four weeks after that. Really didn’t have much to lose to begin with. But as the meds kick in and you figure out what you can and can’t eat, your poops will go down and you will start feeling better. I already gained two pounds, which doesn’t sound like much, but I lost 27 so I’m happy about anything.

    I didn’t see a nutritionist, just kinda played it by ear. Stayed away from fiber, raw fruits, raw veggies, spicy, fried, greasy, sugarry foods, just like Jeannie suggested, and I’m trying each new food one by one to see if it would work for me. I think a nutritionist is a good idea though.

    And REMISSION is what you want. That’s when we are symptom free. No pain, no blood, hopefully no diarrhea. It takes a different amount of time for everyone to get into remission. Hopefully you’ll get there sooner than later!

    Good luck with everything!

  6. Vicki Thomas November 29, 2011 at 2:58 am #

    HI Patti

    I’ve had colitis for two years now and have had my share of ups and downs with it.

    Regarding diet: there are people who are advocates of the SCD. There are others who are advocates of eating a low-fiber/low-residue diet. There are others who have gone to completely raw vegan diets. In other words – the diet/nutrition aspect of UC is completely individual. The disease affects each of us differently and this is the same for diet. When I’m in a flare, I stick to chicken broth, white rice, and egg. When I’m in remission (no symptoms or side effects – normal bowel movements) – I avoid dairy and gluten. I try to eat lots of raw vegetables and because my colon is rather ineffective now, I add things like ground flax seed and chia seeds to my daily bowl of oatmeal. Really the diet/nutrition aspect comes down to some experimentation. It helps to keep a food journal and track how you’re feeling and what your symptoms are.

    Remission: my understanding of remission is that you’re completely symptom and side effect free – i.e. no bloody diarrhea, no cramps, no bloating, no going to the bathroom 40 times a day. I’ve been in remission now since the middle of January and really, my life is just like that of a “normal” person. I have the occassional cramp but no other signs/reminders that I have UC.

    Weight: I also lost a lot of weight in my last flare – but your body will start to regain the weight as you get healthy again. I think in one week I gained 4 kilograms (9 pounds)! Just eat how it works for you and your body will adjust.

    Medication: sometimes it can take a while for the medicine to start working. For this you really need to talk to your GI doctor.

    Believe me, that things will get better. This time last year I was so sick that I couldn’t eat or drink and spent all my time lieing in a bed. Today, I’m in Belgium racing my cyclocross bike on the professional elite circuit. So things do get better – your life will return to you and you will get through this. Things seem bleak right now but, there is light at the end of the tunnel.

    Keep us updated with how you’re doing. And keep asking your questions!

    take care,
    vicki

  7. Patti December 2, 2011 at 2:25 pm #

    Thank you all for your helpful answers! Wow – for an individual kind of disease, I see a lot of the same things being said.

    I have to say I am so grateful I found this site! I am anxiously awaiting the biopsy results from the doc, fingers crossed because this is bad enough – although I have noticed small improvements – I will take whatever improvements I get at this point. When I go back to my GI the first thing I will ask him is about is recommending a nutritionist to help me get started.

    And too funny about the symptoms adding up after diagnosis. I bought a couple of books and have been sitting here realizing that I have had this for some time and didn’t realize that it wasn’t just a flu like thing or a bug.

    Thank you all again!

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