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Posted 6/6/2009 7:32 AM (GMT 0)
Hi, I am hoping someone out there can understand this and maybe give me some feelings on this. I went to see my GI specialist today to let him, know I was in an extreme flare-up for the past three weeks. He has me scheduled for a colonoscopy for June 16 and I didn't want to have it done for fear of peroforation. He said it had to be done regardless and now I am freaking out. I have been having bleeding mixed with mucous mixed with constant diarhea where it is more like straight fluid coming out instead of solid and it is ridiculous amounts like 20 plus times a day and about 15 at night. I am run down, depressed and just feeling like giving up at this point. The thing that made it worse today is that he said we may not find that it is very severe when we go in.....now the way I feel, that is not an option. If they are going in there against my better judgement, I expect something to be found! I am not imagining this as some people like to believe. I cannot work and am on dissability right now because the sypmtoms are so sesvere that I can't get out of the house so for them to come back and say "it doesn't look that bad" would be devastating and I don't know what I would od. This being said , in my mind , I could see no possible way this could happen being how I physically feel and see every trip to the bathroom. I have had four tranfusions in the past but they are sayig now that my blood levels had evened out in the last couple of months but now that I have had this extremem flare-up in the last 3 weeks my mother (lab tech) said it may take a month before they show up low again. Anyway , enough of my rambling ...has anyone been in this situation?

Desperately seeking help and super scared.

I just added a title to your post

Post Edited By Moderator (Red_34) : 6/6/2009 5:34:24 AM (GMT-6)

Posted 6/6/2009 8:06 AM (GMT 0)
Hi..welcome to the forum.

What medications are you on at this time...and is your UC throughout your whole colon or limited?

Were your blood transfusions because of the severe bleeding of UC?

When was your last c-scope?

My initial c-scope was done when I was flaring....but I was on Asacol at the time, so it had done some healing and improved some of my symptoms before the scope.

I've not been in a situation as you are in, and I would be just as scared.

I hope that you are on some medications and that by the time you have your scope, your symptoms will have declined somewhat.

quincy
Posted 6/6/2009 8:27 AM (GMT 0)
Did you ask him why the Colonoscopy needs to be done now?

My GI gave me Colazol to reduce my flare before doing a Sigmoidoscopy so he could diagnose me and prescribe Prednisone. He said that he couldn't even do a full Sigmoidoscopy at the time, because I was flaring so badly. He didn't do the Colonoscopy until I was in remission.
Posted 6/6/2009 11:41 AM (GMT 0)
If you already have a uc diagnosis, there's no reason to have the scope -- especially if it won't change the outcome of your doctor's prescription(s), which it probably won't.  Your doctor can treat the symptoms, and you can postpone the scope until it's more comfortable or convenient for you.  Your doctor does not need to visualize your colon to write a prescription.

If you haven't been diagnosed with uc, your doctor might perform a flex-sig instead.  It's also not inconceivable that he or she could give you a prescription to attempt to quell the flare before any endoscopy. 

Posted 6/6/2009 1:44 PM (GMT 0)
That's what I said about waiting until it wasn't as flared up but unfortunately , my insurance provider is pushing for the scope because he says htere are no markers in my bloodwork to show severe colitis. Meanwhile I am bleeing and going 25 plus times a day. I am very depressed in the feeling that no one is taking me seriously anymore. I was on two study drugs which were Remicade and another one that is still anmeless. I had terrible reactions to both...I actually have scars on my chest face, arms and legs that look like chemo scars. ( I know what chemo scars look like because my sister has them from her chemo treatment) so basically my body rejected the drugs and this is what happened. Well as soon as I could no longer be in the study, I felt like they just washed there hands of me and basically said we don't know what else to tell you except your bloodwork doesn't match up to your symptoms. So I am really really hoping that something shows with this recent flare-up if I'v got to have it done for proof to both them and the insurance company that I am still in trouble here. I can't see why it wouldn't show up but the doctor has just scared me into thinking it's in my head and it could just be bleeding from a small hemmroid. But that being said...I am pretty sure hemmroids don't make you have the diarhea that I am having...does anyone know if these go hand in hand?
Posted 6/6/2009 1:52 PM (GMT 0)
This is a response to Quincy, Thankyou for welcoming me to the forum. I am currently on lomotil and pantaloc for the indigestion. We stilll don't know if it involves the entire colon because the last two scopes they did, were so inflammed they could proceed any deepre into it to tell. I had the 4 blood transfusions about 1-1/2 years ago because of bleeding rectally...my blood count at the worst was 57 and they didn't know how I was even walking...I just felt like I was having an asthma atack because I found it hard to catch my breathe when waking. My last scope was about 4 yrs ago and that is another whole story in itself being that they didn't sedate me during a flar-up and proceeded with the scope even though I begged them to stop. They told me to toughen up , it would take more time to put me out than to do the actual colonoscopy. I am sure many of you know how uncofortable it is to have one done during a major flare-up, let alone on a good day. Anyways , to me this is a huge nightmare........I just want them to find something failrly major so that they will get off my back and get to treating me without questions and now that the doctor has made light of the situation, I have lost all trust and confidence in the whole procedure. I feel like they aren't there to help but to say "there's nothing wrong with this girl, now get her out of here" because I am such a difficult case to treat.
Posted 6/6/2009 5:23 PM (GMT 0)
Hi there poor you, it sounds like your really going through it,Is changing your GI an option,I hate the way people can be so insensitive often when your at your most vunerable,like saying 'toughen up'
****** cheek you should have told whoever said to get on the table and have before they start commenting.I was really bad like you when first diagnosed,and someone said when I was going in oh!
she'll be ok she's had loads of scopes,like that makes it easier to deal with when your flaring,if Iwas you I would refuse the scope at this point,ask them untill you know what they are going to do,regarding your treatment after I literally had to write on a paper how many times, and at what time, how blood etc I was passing,untill they took me seriously,at I landed upin hospital for two weeks.
Anyway goodluck,It sounds like you dersevre better Anna
Posted 6/6/2009 5:29 PM (GMT 0)
Hi there, I have had a colonoscopy and sigmoidoscopies when I was flaring almost as bad as you are, and it all went fine. If you're not confident about the advice your doctor's giving you, then you should get a second opinion, just to get the peace of mind that you are on the right track. Hope you're better soon.
Posted 6/6/2009 5:36 PM (GMT 0)
Hi Darla....what a scary situation your doc and the insurance company has put you in. I agree that you should consider to see another GI if you can.

Do you have a primary care physician (GP) you can see asap who can guide you through this?

Inflammation markers...hmmmm....there are some patients who have them, others don't regarding flares. My doctor never has used them to say I'm not in a flare or I am....don't get that way of thinking since one's butt with bleeding and having 25 bms daily can pretty much sum up a situation more than that.

I'd be scope-shy considering what you've already been through and alternate methods to get inflammation down should at least be tried.

As well...has the doctor done any stool samples to make sure you don't have an infection? I would think that would/should be first on the list.

Have you not been on any 5-ASA medications such as ASacol or any rectal meds since you were diagnosed?

I'm from Canada and don't totally understand how an insurance company can force one to have a c-scope.

Keep us posted as to what's going on.

In the meantime...how are you eating? Sometimes adjusting your diet can help with discomfort and bms. Fibre supplements can help to bulk the stool and lessen the amount of times going somewhat.

Probiotics can also help....

quincy
Posted 6/6/2009 5:48 PM (GMT 0)
     Hi Darla and welcome.  You poor dear, I really feel for you.  If it is any consolation, I have walked in your shoes.

     Let me try to alleviate some of your anxiety (and it really sounds like you are anxious, and rightly so).  I was hospitalized last year for ulcerative proctitis.   I was admitted about 4am on Sunday, May 4th.  The bleeding was so bad that they put a pic line in for feeding and medication to take the pressure off my rectum.  On Friday, six days after being admitted, they performed a colonoscopy.  I, like you, was extremely worried over perforation.  They had to use a pediatric scope because of the ulcerations.  All went well.  The colonoscopy showed moderate ulcerations in the rectum.  Thank God my colitis doesn't venture further into my colon.  However, proctitis is extremely painful and difficult to treat.  Ask your doctor if he will use a pediatric scope on you.  Believe me, they will be extra cautious.  No doctor wants a law suit.  about five years ago the doctor attempted to do a colonoscopy on me while I was flaring and he was only able to go up 20 cm.  Sheesh..and to think I drank that yukky prep for nothing!

 

Posted 6/7/2009 1:48 PM (GMT 0)
Thankyou to everyone who has replied and helped more that you know. I am going over all that you have said and suggested today. I am ging to try and get a clear head to figure this out and what is the best way of handling it...All I can say right nw is the favt that I am terrified and couldn't sleep a wink from stress n the last two nights. For some reason I am afraid they won't find enough when they go in and then they will tell me that it's all in my head. My husband keeps lecturing me (in a good way ) that is isn't physically possible to find nothing since he lives this hell with mevery day, sees how many bathroom trps I make and sees how run down and cranky I am. I just want it over with so they can give me some direction for treatment and get off my back with this doubltfull crap from the insurance compnay.
Thanks so much for your help and I will keep everyone posted as it progresses.
Darla
Posted 6/7/2009 6:22 PM (GMT 0)
How about a short term pred dose pak 2 weeks before the scope?

Feel better : )
Posted 6/7/2009 6:52 PM (GMT 0)
get to the store, get some bananas, and some papaya! and if you cant tolerate them, get papaya nectar, try to get as pure as you can, with no added sugar or anything and some coconut water! coconut water will do wonders for your colon, its soothing, it will keep you hydrated, and your electrolytes in balance, full of potasium and all sorts of nutrients! also, amybe get some raw unfilitered/uncooked honey and raw bee pollen! they are FULL of amino acids and nutrients, all the vitamins and minerals you need, and very soothing and easy to digest..

get some probiotics, none dairy based aswell. you should drink pleanty of water, but dont leave your stomach empty becuase it may cramp up more when you are, as far as the loritab goes, you may want to avoid them because of the APAP(tylenol) its quite destructive on our intestines and digestive tract, but if you cant tolerat the pain, take some and eat it with a bananan or some honey.

also, if you can get to a health food store, try to get some licorice root(DGL), maybe some slippery elm as well...

just take it easy and rest.

this type of routine helps me and works WONDERS, so Im sure it will assist you in getting by.. you need the none dairy probiotics with FOS, it will help with creating a good enviornment in the gut...

Also, maybe some carrot juice will do great for you, it will be soothing, cleansing and nutrional as well.
Posted 6/7/2009 7:07 PM (GMT 0)
I don't think it is possible for them to find nothing if you're on the toilet that many times a day. I thought I would have the same situation when I first had a sigmoidoscopy but they ended up finding a patch of inflammation in my rectum and I was able to treat it with Canasa. Even when I went back recently with barely any symptoms, the colonoscopy showed mild inflammation.

I am sure they will find something and get you on the path to being healthy. I am surprised your doctor won't let you start some kind of treatment without the colonoscopy. Mine started me on Asacol without doing a colonoscopy. She was more worried about me being stick skinny, anemic and miserable. My iron was so low, I had no energy and was always out of breath. I almost needed a transfusion.

If I were you I would see another GI. I don't think this one is handling the situation correctly. Your doctor should be able to prescribe you something. My old doctor would go to the insurance company and tell them what I needed and why she was doing it, not the other way around. It's better for cancer prevention that you keep the flare at bay. Get another opinion if you can.

Posted 6/7/2009 7:49 PM (GMT 0)
Is it possible to see another doctor? It sounds like they have disrespected you at a time when you just need support and reassurance. This would probably help you feel less anxious. Trust your feelings on you condition and what you can and cannont tolerate. The folks on this forum have been in your shoes and can offer some good advice.
I was relieved to hear my doctor ask for the pediatric scope right before I went under. Of course, eat a low residue diet (meaning low fiber) while flaring and get fluids. Probiotics are essential as is water. . God bless and good luck!
Posted 6/8/2009 3:58 AM (GMT 0)
Thankyou so much for the understanding. I am feeling a little relieved already knowing that there are people that truly do understand and I don't feel alone. I am just so panicked that after all the suffering and sickness they won't find enough to continue for a treatment. I mean it could be me totally playing into the " it's all in your head" feeling the doctors' are giving me but I have been on Remicad and study treatments that backfired and ended up with bad , bad side effects and I feel they have given up on me and just want to "wash their hands of me" because I am too difficult to treat. I know that with all the symptoms I'm having there should be no doubt in my mind that something has to show up but after hearing a doctor say " it may be something minor that you think is major" it kind of sends you in a downward spiral of hoplessness and a feeling that maybe I'm going crazy! I now am wondering if the bleeding could just be from hemroids...but saying that do hemroids cause the diarhea I'm constantly getting? I don't even know anymore., I have had this disease long enough that I should know the symptoms and when I'm having a flare up but I think I am so exhausted from the routine of being constantly sick that I don't know the difference anymore, hence the feeling that it's all in my head. I feel like waving the white flag and giving in. It feels like it is consuming me and I'm constantly second guessing myself. The scope is set for the 16th of June but it feels like a year away when you just want to get the results and get over it. Does anyone know if hemroids can cause the cramping and constant diarhea after you eat ? I am assuming it doesn't but maybe one of you has experienced this as well. When I go to the washroom it is mucous mixed with right red blood mixed with other stuf I'd rather not mention but you know what I mean. And I get horrible cramps midway through my left side that relieves after I go. I almost get cold sweats whenI have to go cause it hurts so much when having a movement. I don't know what to think and if I am going through the scope I just want them to find something so I know I'm not crazy.
Posted 6/8/2009 7:18 AM (GMT 0)
Hi...I wouldn't say it's hemmies....and no, they dont cause diarrhea.

Where are you having the pain when you go...does it feel like you're pooing out a watermelon and it's only a little blood and mucus?
If so...it's a flare.

How many times a day do you go?

It's not in your head...one cannot imagine bleeding from one's butt...

Maybe if you call the doc he'll prescribe you at least some rectal meds so that you'll get some relief...

You're not crazy either...you're just in a nightmare of medical b.s.

how much lomotil are you taking?

q
Posted 6/8/2009 12:09 PM (GMT 0)

quincy said...
Hi...I wouldn't say it's hemmies....and no, they dont cause diarrhea.

Where are you having the pain when you go...does it feel like you're pooing out a watermelon and it's only a little blood and mucus?
If so...it's a flare.

How many times a day do you go?

It's not in your head...one cannot imagine bleeding from one's butt...

Maybe if you call the doc he'll prescribe you at least some rectal meds so that you'll get some relief...

You're not crazy either...you're just in a nightmare of medical b.s.

how much lomotil are you taking?

q

HI Quincy, I am taking the 2.5 mg dose of lomotil a day and I take it right now abut 6 pills a day just to function. When I go I can feel the pain go from my right side all the way thrgouh my left side...like it's snaking through the left side and extrememly painful until I rid myself of it. Lately in the last 3-4 weeks it has been 20 plus times per day plus about 5-6 per night, so needless to say I am exhausted from lack of sleep. Which is probably adding to the anxiety. I asked him when I was in to see him friday for some meds to take the inflamation down a bit and he said he wasn't giving me anything else until he got a look inside to see where it was and how bad it was. I did start throwing in a half of a dexamethosone to get out of the house but he said if I did that my scope won't show anything because it will be masked up from the steroids. It's like they want  you to be in agony and hell just so they can get something to look at in a weeks time. Don't get me wrong, I want to amke sure they find something too if I going through this but this is truly hell on earth. I was taking tylenol 3 for the pain but he took me off that as well, to be honest it was slowing down but not stopping the diarhea a little bit. It seems now that I'm not their guinea pig anymore for clinical trials , they want tnothing to do with me. I had no problem with doing the clinical trials either but if they don't work and cause you nasty side effects..why would I continue on??? I gave it a try and was openedn minded to it but as soon as I started to tell them I needed to look out for me, the lines of communication all but dried up.

Posted 6/8/2009 12:12 PM (GMT 0)
Sorry Quincy, to also answer the question about the blood and mucous...yes it is blod mixed with mucous....sometimes alot of mucous but lately alot bright red blood as well. And yes it does feel like what ever is moving around in there is ripping everything open until I finally relieve myself of it which at that point just diarhea mixed with blood and mucous.
Posted 6/8/2009 2:29 PM (GMT 0)
Wow.....I remember having bms such as that, but the GI at least prescribed Asacol initially...only 4 daily, but it helped somewhat.His comment was to hopefully have it help to give me some relief.

He also did stool sample testing....has your doc done that at least?

After the scope, he prescribed the enemas....which were a lifesaver.

Is there any way you can get in to see another GI?

The other thing is for him to do only a sig scope.....he can at least see what's going on without going too far up.

I guess some doctors have their own way....but it's unfortunate you're in such a state. Not only that...you've been in studies, one would figure they would treat you a bit more respectfully.

I do agree that you shouldn't be using a steroid med....

Have you never been on any 5ASA meds such as asacol..etc?

quincy
Posted 6/8/2009 3:24 PM (GMT 0)
I totally hear you about not being taken seriously without some solid evidence. Even my own doctor, I think she's great, but she didn't seem to really understand what was happening until she saw the stool test results. I had told her I had bleeding with every bm. When I was trying to collect a sample for the occult blood test it was so frustrating (considering I had diarrhea and almost no actual "stool" to take a sample of!!). I looked up what "occult" meant... "hidden" blood. Well, hon, the blood in my stool was not hidden.. it was right out there in plain sight! Anyway, I went through the motions and she called me in to discuss the results. In a really solemn voice she told me they had found blood in my stool so we need to get me into a specialist right away! WHATEVER. If that's what it took, then that's what it took.

Then when I saw the GI, I definitely felt I was not being taken seriously at all. She was very abrupt and dismissive with me. My appt was in December, and she booked my colonoscope for April! At this point I thought I was dying of cancer so I was horrified. As it turned out, some test results came in that made her move up the scope to January. I went to see her to discuss the results and her attitude was like night and day. She was very solicitous with me... the scope showed that I really did have something to complain about. I guess she can't rely on the patient's word... it's a bit crazy. I am sure your results will show the same, that you really do have something wrong with you and hopefully you will start to be taken seriously.
Posted 6/8/2009 3:58 PM (GMT 0)

quincy said...
Wow.....I remember having bms such as that, but the GI at least prescribed Asacol initially...only 4 daily, but it helped somewhat.His comment was to hopefully have it help to give me some relief.

He also did stool sample testing....has your doc done that at least?

After the scope, he prescribed the enemas....which were a lifesaver.

Is there any way you can get in to see another GI?

The other thing is for him to do only a sig scope.....he can at least see what's going on without going too far up.

I guess some doctors have their own way....but it's unfortunate you're in such a state. Not only that...you've been in studies, one would figure they would treat you a bit more respectfully.

I do agree that you shouldn't be using a steroid med....

Have you never been on any 5ASA meds such as asacol..etc?

quincy

Yes I have been on ASACOl with no help from them, they said it had gone too far past the helping stage for that particular drug to work, they said I needed to get the flare down in order to get the asacol a chance to work.

Posted 6/9/2009 5:58 PM (GMT 0)
okay, so last night I was so sick but oh so hungry that I had a nice tall glass of milk...I felt great and content for about 15 minutes , then found myself RUNNING to the bathroom ony to notice when I relieved myself , the milk had went right through me in the same form it went into my body! Has anyone had this happen??? I found it so bizarre
Posted 6/9/2009 6:24 PM (GMT 0)
It's impossible for it to happen to go through your system in 15 minutes.

So, it may be something else.....
Posted 6/11/2009 10:13 AM (GMT 0)
Different foods have different digestion times. Usually, the more water the food contains the faster the digestion time. Diarrhea results when digestion is rushed. Such a meal moves through the body very quickly, so quickly that it does not get digested.

I drank bubble tea once, and, yes, 15 minutes after drinking it, I was on the toilet. I estimate it took me about 15 minutes to drink it and another 15 minutes to get to a restroom.
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