New here - Desperate for advice

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fizzybubbles
New Member


Date Joined Feb 2008
Total Posts : 3
   Posted 2/16/2008 7:27 AM (GMT -6)   
Hi, I have been reading this forum for some time and i was hoping that somebody would be able to give me some advice. I apologise for the length of the post – i just don't know where else to turn.

I have had digestive problems for around 10yrs after numerous tests i was told i had IBS and medicated as such. about 4 yrs ago my symptoms worsened and i had a flexible sigmoidoscopy the doctor on immediately going in said something wasn't right he thought it was Crohn's (my grandmother has Crohn's so i knew a bit about the disease). However the histology came back as far as i remember inconclusive, so was told i had IBS and to eat properly etc.

cut to august 2007 – still suffering with chronic pain, urgency, lots of blood and mucos, eye and skin problems, nausea, cramping and i have another sigmoidoscopy this time at a different hospital. Again the doctor while performing this procedure says what he is seeing is not normal, there looks like scarring from ulcers that have healed and looks like whatever had been going on has been going on for a while. Unfortunately the printer wasn't working so there is no record of this. The histology came back confirming moderately active ulcerative proctitis and i start pentasa enemas. Christmas hits and i still bleeding including lots of dark stuff, mucos and just movements of bloody mucos. The GI decides to put me on Asacol and pred and orders a colonoscopy as he suspects there may be something going on further up (which is my thoughts). I had the colonoscopy 3 weeks ago it showed “mild disease and IC valve looked a little inflamed and not clearly visable they were unable to get into the small bowel”.


Last week i went to clinic and i was still experiencing blood, pain mucos etc, the doctor said that it sounds more like Crohn's than UC and said if i was no better in 7 days i would have to be admitted and have a hydrocotosone IV. Then on Thursday i go back to clinic and see yet another GI (I live in the UK and it seems every time you go to clinic you see a different doctor). He has received my notes from the previous hospital and spent most of his time reading those and not listening to me. He said that i probably just have IBS that nothing really showed up on this last colonoscopy and i should go away and take up to 8 imodium a day. I am still on pred and experiencing some blood still – they have not found any haemorrhoids etc to account for it.


My questions are

  1. Do you have idea what the last colonoscopy report ment?

  2. Does this sound like just IBS?

  3. How do i get i definitive diagnosis?

I am so upset and angry by all this i am fatigued all the time and just want a definitive answer after all this time. Any advice is truly welcome.


Thank you all for listening x




Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 2/16/2008 7:43 AM (GMT -6)   
Hi, welcome to Healingwell :) I just want to yell when I read stories such as yours. You clearly have an IBD - Uc or CD, I honestly can't say, but you should be treated as such. Your doctors need to get their act together and treat you properly. Bleeding from the intestines with no evidence of hemmeroids is not IBS. IBS does not cause bleeding. Print up copies of any info you find on the net and show that to the doctors if you have to. You need to be firm in demanding attention for your problems. I'm so sorry you are getting the run around from this but sometimes you need to be the squeaky wheel.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc -'92 - Colazal (9 daily), 6mp (50-100mgs), Prilosec, Biotin, Forvia, Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa** ~Allergies - Singulair
~Secondary Reynauds Syndrome -'04 - Norvasc~Fibromyalgia -'06~No meds
To help Healingwell - click here: DONATE
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"The quality of my life depends on the quality of my thoughts."
 
 
 
 

 
 


fizzybubbles
New Member


Date Joined Feb 2008
Total Posts : 3
   Posted 2/16/2008 8:36 AM (GMT -6)   
Hi and thank you so much for your quick reply. I really appreciate your thoughts on this, i just feel kind of alone right now and i am so tired of fighting and feeling unwell all the time - i didnt think that bleeding corralted with IBS.

Thank you again for taking the time to reply x

marty1976
Veteran Member


Date Joined Nov 2005
Total Posts : 2045
   Posted 2/16/2008 9:55 AM (GMT -6)   
scarring in your colon from ulcers means you have some form of IBD i would think.If you are losing blood and having a lot of IBD related issues then it clearly ain't IBS.It is normal for me to have colonoscopys were there is no sign of active disease,this means i am in remission.
You need to get results fast.Let us know how it goes for you
                                     keep the faith 

         asacol/proctifoam/Zoton (lansoprazole)/propranalol



        http://www.myspace.com/martybuzz1<FONT]


marty1976
Veteran Member


Date Joined Nov 2005
Total Posts : 2045
   Posted 2/16/2008 10:04 AM (GMT -6)   
I didn't see the part were they did confirm Ulcerative Proctitis.My first colonoscopy reported that i had Ulcerative Proctitis and possibly Ulcerative Colitis.I have had UC for 16 years and i understand the limbo land that you are in.Please make sure you have a good doctor on your side.If your doctor isn't giving you the answers you badly need as a patient then you must find a new doctor.
The fact that they are saying that they will need to start a steroid Iv means that you have definitly got an inflammation that needs treatment.It sounds like UC OR cROHNS TO ME.hOPE THIS HELPS.wHERE IN THE Uk are you, i live in Ireland
                                     keep the faith 

         asacol/proctifoam/Zoton (lansoprazole)/propranalol



        http://www.myspace.com/martybuzz1<FONT]


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 2/16/2008 11:03 AM (GMT -6)   
Welcome to the forum. Your story sounds just like my idea of what national health care would be like if the US government tried to run it. IBS doesn't cause bleeding, pus and scarring from old ulcers. You absolutely have IBD and should be receiving appropriate treatment. I don't know what the recourse is under your system, but my philosophy is that everyone has a boss. If the doctor in the clinic is incompetent, he or she has a supervisor. Try to talk to them. If you haven't had a referral to a GI consultant yet, you need one. If you make a big enough nuisance of yourself, usually the doctor will refer you on just to get you off his caseload.

Do whatever you have to do - talk to supervisors, talk to your local or national government representatives, call the newpapers or television networks, camp in the clinic waiting room. You have a debilitating disease that can also be a pre-cancerous condition, and it sounds like if you don't advocate loudly for yourself, you're going to get shoved to the corner and ignored.

My best wishes will be with you. I wish I could be there to make a scene on your behalf and get you some attention.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 
Co-Moderator UC Forum


fizzybubbles
New Member


Date Joined Feb 2008
Total Posts : 3
   Posted 2/16/2008 11:05 AM (GMT -6)   
Thank you for your reply. I do just feel in a state of confussion with all this, as i said the doctor i saw on Thursday spent the time reviewing 8-10yr old notes and didnt listen to what i said. He even said the Ulcerative proctis could have been caused by the enema i had before the sigmoidoscopy!? i am sorry but i do not belive that at all!

I am seeing a specialist IBD nurse on Monday as i called the hospital yesterday to say that i was unhappy with the consultation i had on Thursday. So i am hoping that i may be able to get some answers.

I live in London, thank you again for your thoughts x

jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 2/16/2008 12:18 PM (GMT -6)   
Thank you for complaining! We need to do that for ourselves sometimes, and it did get you some results. I hope the nurse will be more tuned in to you than the doctor was.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 
Co-Moderator UC Forum


sore_guts
Regular Member


Date Joined Jun 2007
Total Posts : 185
   Posted 2/16/2008 12:44 PM (GMT -6)   
Maybe bringing someone with you may help.  If you have a spouse or other close family member who could be more demanding of getting results if you are still not getting the right answers.  I know that when I am flaring badly and tired and sick it is difficult to to be assertive because it takes so much energy. 

 
sore_guts
 
left-sided UC
400 mg Asacol 4 pills 3 times/day lialda 1 pill 3 times/day
making some very light attempts using Rowasa enemas just cant seem to do these
iron supplements 3 times 1/day
multi-vitamin 1/day
Digestive Advantage Colitis formula 1/day
 
 


Bum Deal
Regular Member


Date Joined Jan 2008
Total Posts : 34
   Posted 2/16/2008 2:33 PM (GMT -6)   
Hi, sorry to hear what you're going through with your docs - I've had the same problem with the NHS, you constantly have to explain yourself to new doctors all the time.
I agree with everyone else here - you haven't got IBS with the symptoms you describe, and your sigmoidoscopy diagnosed Ulcerative Proctitis, which is an Inflammatory Bowel Disorder (IBD). Whether their printer was working or not, they will still have the original written reports and your histology (this is the NHS - they keep all paperwork as long as they don't lose it).

Your last colonoscopy also states that "mild disease" was found - this also suggests an IBD, and not IBS.
Have you had much done in the way of blood tests? What doctors should be looking at is your CRP level - this is a marker in your blood tests that show the level of inflammation in your body, and is a good sign of the presence of active IBD. The reason you're put on steroids etc is to bring your immune system down so that the ulcers and inflammation go away, which stops the cramping, pain and bleeding. When doctors talk about bringing you into hospital for IV steroids, it's usually because your inflammation levels are high and not responding to the meds. For one doctor to raise this as an option and the next to wave you off with a diagnosis of IBS is simply ludicrous.

Usually the definitive way to diagnose IBD is via colonoscopy, at least for Ulcerative Colitis - I'm not sure about Crohn's.
I'm also concerned that the last doctor you saw seems to think taking lots of Imodium is a good idea. If you read the packaging for it, it says not to take it with Ulcerative Colitis without seeking advice, as there can be serious complications. Although many of us use it to tide us over for the occasional outing, it's really not a good idea to take a lot regularly, so your doctor really doesn't know what he is talking about, and clearly didn't take you very seriously. Take it easy on the Imodium if you have to use them until you find a decent GI and get their advice.

When's your next follow-up? If it's not soon, ring your outpatient's clinic but ask to be put through to the gastroenterology secretary - I've been fobbed off by the outpatient receptionists in the past, but the gastro secretary has managed to bring my appointments forward when I've been really ill or concerned.
The questions you need to ask are:
What are the results of the colonoscopies I have had, and what do they mean?
Do my blood tests show raised CRP (inflammation) levels? If so, why? Is it because of the IBD?
If my CRP levels are high, what are you doing to bring this down? (Are the steroids I am on high enough to fight this? If not, why am I on them?)

These are straightforward questions that any gastro doc should be able to answer with access to your notes. If they can't, then I would suggest filing a complaint, as it is unacceptable that they are faffing around with a clear diagnosis while you have to suffer. I've found you have to learn a lot about the disease yourself to be able to ask the right questions sometimes, which isn't the way it should be.

Hope some of this is helpful to you, and of course I hope they stop mucking you about and get you well asap.
DW

Male 30 Years Old.

Diagnosed Pancolitis June 2007

Currently 20mg Prednisolone, 12 tablets Asacol, 50mg Imuran (started Dec 07).


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 2/16/2008 4:49 PM (GMT -6)   
Thanks for responding, Bum Deal, and welcome to the forum. I always feel at a loss trying to advise people as to how to maneuver through your national health system, because I'm not familiar with it. Good to have you here!
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 
Co-Moderator UC Forum


julee70
Regular Member


Date Joined Oct 2007
Total Posts : 486
   Posted 2/17/2008 12:33 AM (GMT -6)   
Fizzy,

I'm really sorry to hear your tale. It sounds like you need a doctor dedicated to your case so that you can call and check in with the same person who will make sure you are responding to medication, etc.

I'm sure you have your hands full trying to navigate the system. Here are a few questions I would ask the next doctor you see:

What is an IC valve and what does the colonoscopy finding relating to it mean?
Why couldn't they get into the small bowel? Is that common?
Was the prep for the procedure done well? If so, can you believe that the results of the colonoscopy are accurate?
How long did the colonoscopy procedure take? (maybe this isn't documented but it would be nice to know if the doctor looked for 2 minutes or the recommended longer period of 10-15 minutes)
Were biopsies taken from the colonoscopy? Were they all negative?

And last, I would question someone to death about IV steroids. It's not something I've ever had here in the States and I've been plenty sick and seen a bunch of very well-known doctors. The most steroid treatment I've had is steroid enemas or prednisone. IV steroids seem extreme to me.

I really hope you can find a compassionate, knowledgeable doctor who can get you on a good path to healing. Can you go outside of the system and get a consult with someone you choose?

By the way, isn't Britain's system one of socialized medicine? From what Judy said, it sounded like she thinks Britain has a national health insurance/healthcare plan, which I believe is very different from socialized medicine. Just curious! Thanks and I really hope you get some good care and fast.
-------
UC for the last ten years
Current Meds: 6MP since 2006
Past Meds: You name it; I've tried it.


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 2/17/2008 1:25 AM (GMT -6)   
Julee, I believe Britain does have a socialized medicine program. The name it goes by is the National Health Service. I think that's where the confusion came from. Canada and many European countries have similar programs, or so I've been told.

That's why the recommendations I make are sometimes vague. I know the system there is different, based on what the Brits here on the board say. Their GP seems to take a more active role in treating the IBD, and they seem to see the specialist less often. Also, I'm not sure whether they have a choice of doctors or one is assigned. So I try to stay more general because I'm not so familiar with their healthcare system.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 
Co-Moderator UC Forum


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 2/17/2008 1:27 AM (GMT -6)   
Oh, and let me add when I said if the US had a national health care program, I was referring to a system like that in Britain, not to a universal insurance system. You're right, they're very different.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 
Co-Moderator UC Forum


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 2/17/2008 2:28 AM (GMT -6)   
You should be getting a small bowel follow through...crohns can affect the entire GI tract from mouth to anus and it can pop up and clear up since there really is no rhyme or reason to it...crohns cannot be ruled out for you because 1. family history and 2. your symptoms.

You need to find a better GI and get looked after properly...there is no bleeding with having IBS as you well know (unless there are hemmies involved).

Find a new doc and get them to do an upper GI series on you.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)

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