Confused…

Introduction:

Ok here goes, I’m a 31year old women living in Perth Western Australia. I am married with 1 child. I have pretty much lived a fairly active lifestlye, Always played sport as a child and continued to do so as an adult. I was diagnosed in October 2011 with UC but prior to that had never really been a sickly person. Very rarely even getting a cold in winter!

My Symptoms:

My symptoms at the moment are, frequent bathroom visits, blood, sores on my arms and mouth, abdominal pain on my right below my hip and also closer to the middle on the left. Recently had a couple of fainting episodes but really not sure if that’s related in any way.

My Story:

Ok, so in October of 2011 I started to need the bathroom more times than normal. Just to over-share a bit I’d say prior to this my normal would have been once every 2 days (just how I’d always been). so this went on for about 6 weeks before I really thought I should see my Dr. We were traveling to Bali in December and I wanted to have it sorted out before we went. So my GP rans heaps of tests, blood and stool (spanning over about 3 weeks) and everything came back normal except the blood test about having high levels of inflammation. He had talked about IBD briefly before this but after this result referred me to a specialist.
So off we went to Bali and I thought I’s sort out the specialist when I returned. After returning things got dramatically worse. I was using the toilet about 15 to 20 times per day and the pain was unbearable. I went back to my GP and he sent me straight to emergency. Short story to that is they did nothing, I literally mean nothing and sent me home to wait for a colonoscopy. They had said this would be about 3 months away.
My mum had some contacts with doctors so got me in to have the scope done on the Monday of the following week. The next day i was worse and was doubled over in pain and could do nothing but sit on the toilet crying. My mum took me to a different hospital’s emergency (where she used to work) and they ran some further tests. I was treated for a bladder infection and re-hydrated and sent home again as they recommended a scope which I was due to have within 3 days.
So Monday came and I had the scope and the surgeon told me directly after I had Pancolitis. ok I said…….. Left the hospital and immediately googled to find out what that was. The Dr saw my mum at work the next day and gave her a script for Pred which she filled and I began taking them. so at this point I was taking the Pred and some antibiotics for the bladder infection. My GP then called me and told me to come in to see him and informed me I had picked up Salmonella. Through further testing it was discovered I had got it in Bali. I had to change the antibiotics and stop the pred as that was suppressing my immune system and making things worse???? anyway so i finished my course of Antibiotics and was feeling much better, back to 6 toilet visits a day so went for another stool test to check it had gone. The test was still positive so this time my GP didn’t treat it and decided to let it run its course. Ok so we are about at the end of January now and things are still pretty good. Not much pain or anything and still only “going” 6 times a day.
In march things got really bad again and I had a lot of blood and the frequency got back up to about 10 times a day. The surgeon who did the scope saw me again and referred me to a specialist.
I saw my new Dr at the end of May and she was convinced I did have UC. She said I was tolerating things really well and because of that she wanted to take things as slow as possible instead of rushing into various meds etc. so she started me on Sulfasalazine (6 per day) and asked me to come back a month later. I had more stool tests and blood tests done. During this time I started taking a probiotic and a multivitamin every day as well. So after a month I went back and my tests were all normal and things were looking pretty good. I wasn’t really having any symptoms besides the amount of times I was going, which was down to about 3-4 per day. At this stage my Dr ordered a follow up colonoscopy and I just had that done on the 20th July. directly after that scope she told me she could see no inflammation at all and that her diagnosis was that i was incorrectly diagnosed to begin with. She has said that she thinks the inflammation i had in Dec was due to the Salmonella infection (which is totally possible) and that what is going on now is irritable bowel that is slowly going away. So firstly I hope more than anything she is right but how do you explain the symptoms from before I had the salmonella. I was tested before I went to Bali and i didn’t have it yet i was already sick. Then looking back I also had sores all over my arms, this was prior to October and I thought they were Chicken Pox although they are coming back again.
After my colonoscopy I did something really stupid and stopped my meds. Since stopping I have pain, blood, more frequency (about 6-8 times a day) fainting, headaches, sores on my arms and mouth. I emailed my Dr today and she said she was going to stop my meds anyway so it wasnt a big deal already had and didnt seem concered about the symptoms I am now having. I really do like my Dr and think she is highly competent but….. I cant think this is normal and nothing to worry about. People dont have blood and pain and use the toilet that many times a day when nothing is wrong!
Things are so bad i considered going back to emergency on Saturday night but I feel stupid and like I am wasting their time. I don’t know when the right time is go seek medical attention for whats goings on. What do the rest of you do? I told her about another incident a while back and she advised me next time it was like that to go to emergency but now that she has said I don’t have it I think I shouldn’t go???? Oh this whole lot is so confusing!
i am going back in 3 days to see her so she can see my sores and I’m not sure what the outcome will be. hopefully she is right and nothing is wrong. Hopefully everything settles down and I can get back to how I was before all of this started.

Where I’d like to be in a year:

Well since all of this started I have cut my work in half because i simply can not leave the house some days. I can’t go anywhere I’m not familiar with as I may need the toilet without any notice. So in a years time I’d like to be healthy. I’d like to be NORMAL. Id like to only go to the toilet once a day and when i do to not see blood! Id like to be able to play sport again and not feel like i have no energy.

Colitis Medications:

So Sulfasalazine is all Ive really taken and I dont know if it worked. If you gage your healing on the meds then yes it worked but if my Dr’s diagnosis is correct and i dont have UC at all then I may have been taking it for 2 months for nothing!
Probiotic…. Same as above!
My opinion: both worked extremely well. I think it cleared up during the time of taking it as now that im not on it things are getting progressively worse again!

written by Michelle

submitted in the colitis venting area




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6 Responses to Confused…

  1. KK-SCDer August 11, 2012 at 12:59 pm #

    Hi Michelle,

    I replied this on someone else’s post, but I think this applies to you as well (in fact, I think this applies to everyone with UC).
    I’m really sorry to hear about your diagnosis. I too have UC, and I have had it for 8 years. I really recommend you start the SCD diet ASAP. The meds stop working after a while, I’m sorry to say. Even though all the doctors say that diet has nothing to do with the UC it’s obvious it does. I’ve been on SCD for 3 months now, and although I’m not anywhere near fully healed, I’m loads better than I was 3 months ago. I would recommend this diet even if it doesn’t work for me. They say it takes at least as long for your body to heal as it did to get sick, so it makes sense to start it sooner rather than later.
    Best wishes and good health!

  2. Jennifer August 11, 2012 at 4:11 pm #

    If you still have blood, pain, frequency and your meds for salmonella have run their course, I’d try to find another doctor! Sounds like perhaps the meds were working and that’s why it didn’t show on the scope, but when you stopped the meds the flare came back? I’m not an expert but that sounds plausible.

    Do stop eating anything that causes inflammation: alcohol, sugar, salt, caffeine, gluten, etc. Stop dairy as that’s mucous-producing. Stop raw veggies and whole grains as the insoluble fiber is irritating to the colon. You didn’t mention your diet so I’d start here… fish/chicken, cooked veggies, white rice (if you’re not ready to go SCD yet) and avocado was my staple diet.

    Definitely get yourself checked again… your symptoms very much sound like UC. Good luck!

  3. Michelle August 11, 2012 at 8:31 pm #

    So I went back to the dr on Thursday who has said she is still convinced I do not have UC! Please cross yr fingers for me!!!! I have to have another stool sample and if that comes back indicating yes (whatever they test I’m not sure…) but I’m back for scope number 3! If that stool test comes back negative then I don’t have it!
    I am hoping more than anything it comes back negative but at the same time I then have no explanation for everything that’s happening. Im going to wait to see what happens from this next text then maybe see a naturopath and start taking the probiotics again, my dr wants me to start the sulfasalazine again too, which if I don’t have UC I’m not sure why but if it worked and the probiotic then what harm can it do?
    I always thought i was so lucky to get my diagnosis so quickly after first going to the dr (about 5 weeks) when I hear all these other stories of it going on for a year or more but now I’m starting to understand that feeling. It’s now been 11 months since I first had any symptom and in that time I’ve had UC, not had UC, not had salmonella, then had it now don’t have it again. I’ve had a chronic bladder infection and now it feels like its all happening from the beginning again.

    Does anyone else have any random sores that they can’t explain? I would like to find out what other people have and know if it’s similar to what I have?? Mine are like blisters. They Start as small red lumps and within a day or two they are blisters. Pretty small, about 4mm across. Really painful. In the beginning (sept 2011) I had at least 6-8 at any one time. I’ve just had two but have not had anymore again yet.

    • Bev August 13, 2012 at 6:49 am #

      Yes…take those probiotics again! Remember to give them some time to work. It takes some weeks to repopulate your food flora! Also…do try and follow a good eating plan.

      I wonder if those sores are just your body trying to get rid of impurities? I get horrible big sore pimples alot when I’m sick with the UC, but I do have UC, pancolitis actually. You aren’t sure if you do. When the UC is active, I get all kinds of strange marks and sores and zits. My body is not happy when the UC is active, and I think that’s why I get all that weird stuff at that time. I’m in remission now due to probiotics (I take no meds anymore, because they stopped working), thank goodness.

      Anyway, good luck. I don’t know how you CAN’T have UC, but I do hope that you don’t! If not, though…then what the heck is going on with you, right? Hope you find out asap!!

      Cheers:)

  4. Steve August 12, 2012 at 9:45 pm #

    Hi Michelle. Thank you for sharing your story!! I wrote a lot in a quest to maybe help ease your mind so I hope you can stand to read most of it. ;) If not, no worries. Its just we’ve all been where you are even if you do not have UC so I can definitely relate. I remember my first ER visit going much the same way…and I had my first day of college the next morning. Crazy times.

    I could be way wrong so don’t quote me on this but all of your symptoms are UC like except the skin stuff. It is not uncommon to have skin issues with UC as an imbalance in the gut/toxic body/whatever you want to call it…will cause the body to show signs of being unwell in any way it can. However, the blisters you mention…has your doctor seen them? You said you were going to show her but you didn’t mention if she said anything above. If not, take a picture if you have any. At all stages if you can so she can see them. The blisters, to me, sound like they may be an allergic reaction to something but it is just a guess.

    She also suggests it could be a lesser form of illness like IBD. While I cannot disagree with that, IBD is nothing but a lesser form of UC and illnesses like it. In other words, the symptoms/causes/treatments are all very similar. The only acceptable difference I have ever seen is someone with UC is more severely affected than someone who calls it IBD, if that makes sense? But really, they are the same to some. For others, the difference in severity somehow makes them unique of one another. What is funny…doctors who call it IBD generally accept that certain foods can be a cause. If a doctor calls it UC, they likely will tell you food has nothing to do with it(loads of crap if you ask most people here)…so don’t get all confused/scared by different wordings. You will find a means to this soon…just don’t be afraid to speak up when you don’t see improvement within the time the doctor says you should and certainly speak up if symptoms get worse when you are taking things to make them better. It does not just mean you need to switch medicines. It could mean the medicine is adding to the problem, making your body worse than it already is. Above all costs, that is something to avoid…be it meds, stress levels, or food. Also don’t be afraid to get a second opinion if you aren’t getting answers or seeing another specialist. Not all doctors were created equal even though we seem to trust them all without thinking twice about it.

    Personally, I have struggled with acne at times with my UC—you said blisters—and I suppose sometimes it did appear blister like. It definitely hurt a lot and would “pop” like a blister would…but it was merely irritated skin from my body pushing out so much crap through my skin. I gave into it and started an antibiotic which calmed my UC because of the bacteria imbalance but after taking it over a long period I realized the bacteria imbalance returned and so did some of the acne. Ironically, as I suspected, I stopped taking it then and my UC was much calmer like was when I first started the antibiotic. Why mention it? For me at least, it is clear proof that bacteria imbalance plays a huge role like “Breaking the Vicious Cycle” suggests. While you don’t really know what you have yet, for sure at least, I would suggest picking up that book if you haven’t. You’ll learn a lot that will help you regardless and it may help you avoid medicines in the future/bathroom trips.

    Speaking of the book, have you noticed how you feel when you eat certain things? Are there things you notice no issue with the day after? What about foods that make you feel sick the day of or after? If you haven’t, I would suggest keeping a food journal. If the doc has done whatever tests they do and finds no UC—I always thought the only way to rule out other ailments was a scope—and she believes you have a lesser form of IBD, a food journal will help. However, if you are still bleeding and experiencing pain and your doctor says you do not have UC(and she doesn’t know what you have), think about getting a second opinion. I know you’ve been through it a bit already and you’ve mentioned seeing it on this site how blind doctors can be about catching UC. While I have no doubt your current doctor is competent, she may not have experience with UC or know much about digestive illnesses. I had a doctor for a bit whose dad has UC…I’ll be nice and just say you think he would have known more but thanks to him I had never seen so much blood in my life.

    There is a lot more I can say but I don’t want to bore you. Just keep us updated? I definitely want to hear how it all goes—we’ve all been there too. I hope you find good news soon! Steve

    I do want to add one thing. If it gets bad again and you are questioning as to whether you need the hospital, go for the sake of going. I was feeling pretty horrible once. I couldn’t eat—was not hungry even though I had barely eaten in days—, my food tasted strange too, I was dead tired but had difficulties sleeping, etc. I tried riding it out but it didn’t get better. Then I started to notice an anxiety feeling…I can’t explain it but I felt agitated constantly and could never relax…like someone might feel in a bad dream…only constantly and I knew it was real. I am glad I went because I very well might have died shortly after from very low potassium levels—which had my mind all screwed up and explained the strange feelings that still freak me out—and dehydration. In other words, you’re not wasting anyone’s time so get the help you need. It beats staying home, bleeding, feeling miserable, etc.

  5. Ashley August 13, 2012 at 8:49 pm #

    I really hope you don’t have it it but your symptoms sound like mineI have the sores in my mouth when my stomach is acting up (to me that’s one of the worst parts). I don’t get them on my arms but i do get them on my upper thighs. They look like chicken pox and tend to get a little worse when my stomach starts to get a little better. hope you get a quick answer!!

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