can't stop crying.. just want diagnosed

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junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 2/25/2010 2:12 PM (GMT -7)   
I know I am still new to this board but I just need something.. I just don't understand why they can't control my symptoms until they diagnose me. I have been sick since Christmas.. I have had so many tests.. I have not been to work because I can't do my job while running to the bathroom all day so they took me out. I just can't take much more of this. I have been house bound except for going to the hospital and dr appointments.. I don't want to do this anymore...

Why can't she just diagnose me with something...crohn's , colitis.. whatever.. they keep finding things on each test, why isn't it enough? Why can't they just give me a medicine to stop the running to the bathroom....

My symptoms are just so crazy.. I am so freaking tired..losing weight..my movements range from ribbon like stools, to mucus to just diarrhea. All are urgent.. at least 10x a day .. since Jan 7... why can't they just stop that? I don't have much of an appetite, and sometimes the gas pain is so bad it doubles me over..she wanted me to take miralax until the next test but the pain it put me in... and why take a laxative when I am already going.. the next test isn't until march 5.. a push pill endo.

friends and family keep calling me , saying how stupid this is..and I don't know what to do...I don't have alot of drs to choose from.. currently i am going to the university of iowa... i can barely make that car ride without stopping at every gas station.. I am so frustrated and tired of people judging me..i am not making this up, who in their right mind would want to undergo a bowel prep once a week for every freaking test... I want to be better..

thanks for listening.. just needed to vent i guess...sorry... just don't know who to talk to.

hld4good
Regular Member


Date Joined Jan 2010
Total Posts : 193
   Posted 2/25/2010 2:56 PM (GMT -7)   
I began to write this by asking alot of questions and then I realized you do not need to be pummeled with that right now. When you feel like posting again, share with the group about your diet, meds, and any vitamins and supplements you use. There may be something you can do to reduce your pain while waiting for the test in Iowa City. There are so many people on this site who are anxious to help. Hugs.
Age 58, Crohn's since age 21
3 bowel resections, 1980,88,95
1 fistula repair, 2005
probiotic
digestive enzymes


newfoundsun
Regular Member


Date Joined Nov 2009
Total Posts : 145
   Posted 2/25/2010 3:05 PM (GMT -7)   
Wow, how frustrating!  I am so sorry.  I can totally understand how you just want to get back to some semblance of "normal" again.
 
I don't want to flood you with a bunch of advice that may or may not work for you.  I'll just say that when I was first diagnosed (though, I did not have near the severity of your symptoms), a friend of mine who has Crohn's told me to look up "Brasco Broth" and start eating it.  I did, and it helped.  It's basically glorified chicken soup, and it allowed my guts to rest for a time.  Not sure if you are even up for doing that right now, but I hope you can find something to ease your symptoms until you get some help.
newfoundsun
 
http://www.newfoundsun.wordpress.com/  (my blog about this journey I have just started)
 
CD diagnosed 11/12/09
Seeing a Naturopath and modifying my diet, so far


NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 8584
   Posted 2/25/2010 4:19 PM (GMT -7)   
If you just want something to plug you up, then Immodium may do the trick. You could also ask your doctor about Questran, which is a cholesterol drug but also used for controlling diarrhoea and apparently effective at it. It's not dangerous.

Anyway, I do feel for you. The uncertainty and endless testing must be a pretty horrible thing to endure. I hope it passes soon.

Ashworthml
Regular Member


Date Joined Jan 2010
Total Posts : 222
   Posted 2/25/2010 4:59 PM (GMT -7)   
I take questran and it does help, after years of taking between 10 and 20 loperamides a day and still having really bad days, I must admit the questran was a relief!
Michelle 40 years old
Diagnosed with CD 2004 (undiagnosed correctly +- 3 years, wrongly diagnosed with IBS)
Bowel resection 2005
medication: pentasa 500mg , Co-codomol 500mg/32mg codeine
loperamide 2mg (prn - take as many as 10-20 a day)
calcium tablets, multivitamin tablets, Omega 3
Ferrous sulphate(anaemia)
levothyroxine (thyroid)
questran light (3 sachets/day), 3 monthly B12 Injections


junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 2/25/2010 5:01 PM (GMT -7)   
Cried myself to sleep...just read the replies and thank you. I will try and answer some questions..

Diet... last april for health reasons, went gluten free. It eliminated my migraines and dizziness and also helped with on again , off again minor bowel problems. in fact for the first time in years, i was regular, the rib pain was gone and i felt energetic and healthy. Admittedly, over christmas i consumed alcohol and more sugar than i am used to. got glutened once but came out of that. Back to eating healthy. Since the stomach thing worsened i am having a hard time eating. mostly bland foods and now the dr added ensure. no dairy.. really its a stretch to even eat since it hurts so bad.

Meds... first she had me on xifaxan 2x daily. that didn't work. tried lomodil- allergic reaction. anucort suppositories- helped with mucus but after I stopped them, the mucus started again. metronidazole- seemed to cut me down to just 10x a day but didn't change urgency. Bentyl- stopped everything but caused a backup and so much pain..moved my movements to all night long. She put me back on xifaxan, a 7 day course this time 2pills 3x daily. that seemed to help a little but after the course i bounced right back.

Imodium has done nothing for me.

I have googled everything..trying to come up with a solution. I don't seem to fit any one pattern which is maybe the issue. I just have to go the bathroom so much... and as i said, its not really diarrhea... its just this combination ribbon stools, diarrhea and mucus.. alternating with each.. i have never had this.. I just turned 40 January. I have had weird stuff with my bowels but this is the strangest.. and the fact that it won't stop and go away..

thanks for being so understanding...
Christine

leysa
Regular Member


Date Joined Oct 2009
Total Posts : 111
   Posted 2/25/2010 5:18 PM (GMT -7)   
I just wanted to give you some sympathy. I've been in - and still am in - the same boat, and it is so, so frustrating to not have a concrete answer.

*hugs*
30/f
chronic active colitis/possible Crohn's - unspecified IBD
Lialda 2x/day
Entocort 9mg 1x/day
Darvocet or Tramadol as needed


junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 2/25/2010 6:27 PM (GMT -7)   
oh leysa... i am so sorry...hugs to you too..

NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 8584
   Posted 2/25/2010 7:08 PM (GMT -7)   
Seems like your doc has been mostly prescribing you anti-diarrhoeals. It's probably not much comfort, but at least it sounds like she's been genuinely trying to find something which works.

Have you broached the possibility of 5-ASA (pentasa, asacol, lialda, etc.) drugs with her yet? They're anti-inflammatories and are usually the first line of treatment in mild/moderate Crohn's. She may say no, but at this stage it doesn't seem to me you lose a lot by trying: if they don't work they don't work. They certainly won't do any lasting damage if they don't.

Good luck :-/

Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 2/25/2010 7:29 PM (GMT -7)   
I agree with the other posters: Get a prescription for Questran, it will help slow down the bowels. I use it all the time.

Also, try eating natural foods that are easy to digest and bulk you up. Rice, potatoes, bananas, applesauce with a little cinnamon, chicken breast, lean beef, well cooked non-gassy veggies like sweet potatoes, canned green beans (probably ok). Do a Google to find more easily digestible foods that bulk.

Foods that make you go more and aggravate symptoms are processed foods, fried foods, sugar, coffee, and dairy if you are lactose intolerant. Cut these out completely for at least a month.

Find a good probiotic with several strains of organisms. Drink chamomile tea and green tea with unpasturized honey, no sugar.

Take a deep breath and hang in there, things will get better.

junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 2/25/2010 7:58 PM (GMT -7)   
thank you...I do have a question.. why does it take so long to be diagnosed?

I am going to get my records tomorrow.. and see if I can speak to another doctor in the practice... I feel I need a second opinion..Jan 7 was a long time ago...I really feel like I should have answers... am I wrong? Is this how long it takes... please be honest and tell me...is it possible that crohn's/colitis would just develop this severely?

thanks so much... i am making note of everything you guys said... will ask the dr about the other meds...

Valerie3
Veteran Member


Date Joined Feb 2009
Total Posts : 529
   Posted 2/25/2010 8:13 PM (GMT -7)   
It happens very suddenly - I was fine one day, and the next day I was sicker than I had ever been in my life when this all started. Try not to get too frustrated, it takes a lot of people a long time to get a diagnosis, unfortunately. It took almost a year for me, which actually isn't that long compared to a lot of other people who I've seen. Just try to get all of the tests done, it's rough but well worth it. You should have a colonoscopy, CT enterography or small bowel follow through and then possibly a capsule endoscopy if nothing still turns up. Good luck.

junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 2/25/2010 8:41 PM (GMT -7)   
Wow... I had no idea it takes so long..

I have had a colonoscopy, ct, sb follow through and pill cam... the pill cam got stuck in my stomach. they want to repeat the pill cam next friday but this time push it through my stomach. The colonoscopy showed either crohn's or colitis but she couldn't make a diagnosis...

thanks so much...

Terry73
Regular Member


Date Joined Oct 2009
Total Posts : 57
   Posted 2/25/2010 8:57 PM (GMT -7)   

june, i waited years for a diagnosis, i was wrongly diagnosed for years and then i got really bad 2 1/2 years ago (how long i've been off work) and just got a formal diagnosis.  I have more than just crohn's going on so dr's like to blame it on other things.  I have alot of the same symtoms as you, pentasa, asacol, questrine, immuran all didn't work on me (however i am still on immuran) i have just started remicade.  I understand fully your frustration i have and still am there.  i am in canada so although we have health care paid for we also have huge wait lists for everything.  Right now i need to get into a surgeon according to my dr on an "urgent" basis.  He tells me i'll have to suffer with the pain for a couple weeks and guess when my appt is  MAY 10th.  I have a recatal prolapse now because i've been going so much for so long and it comes out every time i go and let me tell you hurts like h e double hockey sticks (speaking of hockey sticks WTG CANADA GOLD!!!!! sorry lol) i don't know if i can make it that long luckily i see my GI on monday!

anyway enough of my venting just wanted you to know that you are not alone and ive been there and hopefully one of the drugs will work for you and you'll get relief soon!!! 

PS you may want to try glucerna its for diabetics so it doesn't have sugar in it like ensure and its easier on the tummy.  I can tolerate them and i can't drink anythink like that usually!


Offically diagnosed with Crohn's Oct 2009, been living with bowel problems since 1990
Current meds: Remicade Feb 2010, Immuran, rel-pax, Topomax, Corticosteriod Suppositories, lantus, humalog, 2000u vit d, calcium, multivit, omega 3, Vit B


Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 2/25/2010 9:22 PM (GMT -7)   
It happened very suddenly for me also. Within a month, I lost more than 12 lbs and I was slim to begin with.
It took about 1-2 months to get diagnosed.

tsitodawg
Veteran Member


Date Joined Sep 2006
Total Posts : 845
   Posted 2/25/2010 11:05 PM (GMT -7)   
It took 2 years of tests and surgeries to diagnose my crohn's and that was because I was one of the first in my state to test the pill cam test. I think that if you read through a lot of the posts you will probably notice a very similar diagnosis pattern of that of which you are going through. There are the exceptions to this with those that have emergency surgeries or whose disease is so far advanced that is just obvious on the scopes but the majority of us start with symptoms similar to IBS. Luckily in the past decade there has really been some advancements in the tools used to diagnose our disease. The pill cam test that you say is next is probably the best tool out there as it can see areas that the scope may have a hard time reaching. The other test that may or may not be covered by your insurance company is ther serology 7 test from promethius. Usually doctors will exhaust all of the scopes before they go that route because the insurances companies require it before approved the promethius.
There are a number of reason why a doctor will not go and start you on Crohn's medications without a firm diagnosis and one of the most important would be of the future side effects of some of the medications. I have been on just about all of them out there and can tell you that I have yet to find an easy one without a side effect. From everything you have written, I am a little surprised that they have not started you on a course of prednisone to stop the flare, but that tells me that there is a possibility that they are looking in another directions than Crohn's or IBD. I know that it is so frustrating to be going through both the physical and emotional pain but you need to stay strong and positive. Stessing out will only make your conditon worse and make your symptoms be brought to your attention more. (not that they ever are not to your attention just more focus on them) This site is an excellent place for you to come for support and there are others here going through the same thing that you.
Remember to have an open mind during this process and be patient. In saying that I don't mean that you can complain or have to stay silent, but let the doctors get a complete evaluation before coming to a conclusive diagnosis. I pray that you do not have Crohn's and that your doctors are being so thorough that they find something like an intestinal infection or curable illness. I would much rather my doctors take their time and get it right than give me a wrong diagnosis that would not only hurt my health but also potentially give you a pre existing illness on your record affecting your insurance rates. In the mean time stay positive and do not be afraid to keep calling your doctors and telling them the pain you are in. You are your own advocate and need to let them know exactly what is happening and the severity of it.

Mrs Ouch
New Member


Date Joined Feb 2010
Total Posts : 4
   Posted 2/26/2010 3:25 AM (GMT -7)   
Hi junerainbow - I understand your frustration. I too am waiting for a diagnosis after being told I have IBS for the last few years. It is only now that I have lost 50lb and have severe pain that I am being taken seriously by my doctor.

I suffer from "don't like to make a fuss" syndrome but I've found that I have had to be a bit more pushy to be taken seriously.

While I'm waiting on tests next week I'm trying keep my strength up by eating soup, meal replacements and rice when I'm not too bad as well as taking a good multi vitamin/mineral. It's also been suggested to me by other forum members to keep a list of symptoms, food diary and notes on any tests I have so I can have all the information at hand when I visit the docs.

Hugs and sympathy.

junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 2/26/2010 6:53 AM (GMT -7)   
thank you all... I did have the IBD panel done on tuesday, they told it needs to be sent away... I wonder if that is the test you are talking about?

I definitely suffer from" don't like to make a fuss" and " don't want to offend them" syndromes..its just been so long and the fact that I have been out of work so long stresses me out and wants to rush them...I never imagined when I got sick that I would potentially lose my job..but I am running out of FMLA so I will just breathe and focus on getting better... I guess one step at a time.

I appreciate everyone sharing their stories with me.. definitely put things in a different perspective.

this is a great group.

NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 8584
   Posted 2/26/2010 8:06 AM (GMT -7)   
tsitodawg said...
There are a number of reason why a doctor will not go and start you on Crohn's medications without a firm diagnosis and one of the most important would be of the future side effects of some of the medications. I have been on just about all of them out there and can tell you that I have yet to find an easy one without a side effect. From everything you have written, I am a little surprised that they have not started you on a course of prednisone to stop the flare


Prednisone is a way more dangerous drug than all but the most powerful of Crohn's medications. It's prednisone I would recommend as the last resort medicine, not mesalazine. Yeah, in theory you only take it for the short term then taper off it - but then again how many Crohn's sufferers are on a medium to high dosage of prednisone long-term, unable to taper off it due to steroid dependency?

Also, I do remember reading about a doctor who prescribed one of the mesalazine/5-ASA drugs for a patient with IBS who hadn't been helped by anything else, and it did help them. Wish I could remember more, but it was remembering that which made me think of suggesting it here.

junerainbow said...
thank you...I do have a question.. why does it take so long to be diagnosed?


It does for some people. I was one of the lucky ones - luckier than I knew at the time. One reason why it takes a long time for people to get diagnosed is that doctors brush their symptoms aside by saying it's IBS - even though IBS is, in theory, only meant to be diagnosed after everything else (Crohn's, UC, coeliac, gut infection, etc.) has been excluded. The only symptom I had at the beginning was diarrhoea, and mild diarrhoea at that. But after one stool sample test, colonoscopy and SBFT I got my Crohn's diagnosis. It surprised me and deep down I didn't believe I really had it. Turned out the GI's call was better than my own; he was right, I was wrong.

Another reason for diagnosis taking a long time is that Crohn's tends to produce more wear and tear on the intestines over time, but in the beginning there may not be much visible sign of it on the scopes yet, eg ulcers, scarring, etc.

Has any doctor explained your tests to you? What they show, what they don't show? If you want to know what the doctors are actually looking for and how they diagnose Crohn's disease these links may be of help...

tinyurl.com/yd2myhl - Turned this one into a tinyurl link, because it was so long otherwise. It might also be useful to have a look at "Differential diagnosis" at the bottom of the page and see what else the doctors may be looking out for!

en.wikipedia.org/wiki/Crohn%27s_disease#Pathophysiology - Good old wiki...

None of this, of course, will tell you if you actually have CD or not. But I hope it helps to let you know it's not a particularly easy disease to diagnose and that there's always the possibility it could be something else. And that what is happening to you is, while unpleasant, sadly all too possible with a hard-to-diagnose disease.

Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 2/26/2010 9:45 AM (GMT -7)   
Terry73 said...
june, i waited years for a diagnosis, i was wrongly diagnosed for years and then i got really bad 2 1/2 years ago (how long i've been off work) and just got a formal diagnosis. I have more than just crohn's going on so dr's like to blame it on other things. I have alot of the same symtoms as you, pentasa, asacol, questrine, immuran all didn't work on me (however i am still on immuran) i have just started remicade. I understand fully your frustration i have and still am there. i am in canada so although we have health care paid for we also have huge wait lists for everything. Right now i need to get into a surgeon according to my dr on an "urgent" basis. He tells me i'll have to suffer with the pain for a couple weeks and guess when my appt is MAY 10th. I have a recatal prolapse now because i've been going so much for so long and it comes out every time i go and let me tell you hurts like h e double hockey sticks (speaking of hockey sticks WTG CANADA GOLD!!!!! sorry lol) i don't know if i can make it that long luckily i see my GI on monday!

anyway enough of my venting just wanted you to know that you are not alone and ive been there and hopefully one of the drugs will work for you and you'll get relief soon!!!

PS you may want to try glucerna its for diabetics so it doesn't have sugar in it like ensure and its easier on the tummy. I can tolerate them and i can't drink anythink like that usually!



Terry,

I'm in Ontario Canada and I ALWAYS get to see specialists within a week or two when it's urgent. I just made an appt with one surgeon who gave me April 1, so I called another and I see him next week!

Maybe you should call other surgeons offices and find out their wait times for urgent situations. Someone will take you sooner, unless you are in a remote area and don't have much to pick from.

We do not have HUGE wait lists for everything. It probably depends on the doctor and location.

Post Edited (Roni) : 2/26/2010 9:48:15 AM (GMT-7)


Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 2/26/2010 9:56 AM (GMT -7)   
I don't believe prednisone is a "way more dangerous drug than all". There are other drugs for CD that are just as bad, maybe worse, like imuran which can cause cancer and liver disease, and remicade-like drugs which can cause cancer in kids and fatal heart failure in any person with any type of heart disease.

According to my GI and info on the net, prednisone can cause osteoporosis, tachycardia, elevated blood sugars, and maybe psychosis, especially in ppl who have mental illness like depression, bipolar, etc.

All drugs have good and bad. We have to weight the positive against the negative. I've taken all of the above and had side effects. I can't take remicade class drugs because I have a minor problem with my heart.

Still, I find imuran and prednisone helpful when needed.

vixen
Veteran Member


Date Joined Jan 2010
Total Posts : 794
   Posted 2/26/2010 10:03 AM (GMT -7)   
I understand your frustration at wanting a diagnosis, followed by some treatment that works! My son got prescribed Gaviscon for two years as Dr thought it heartburn :( When he eventually got referred to see a consultant he was more or less give a colonoscopy immediately and from what they found there the diagnosis was all too evident- was told there and then! Then came the treatment/drugs and finally some relief for him.
Prior to getting referred I was constantly online trying to find a likely diagnosis for him(as Dr not listening) and Crohn's was one that in my opinion didn't match his symptoms (or so I thought) The closest I could come to was a peptic ulcer lol. Now I know more about Crohns I have discovered that he had a lot of other symptoms too that I didn't pick up on(very pale, never wanting to get up, poor appetite, etc) In my mind his main symptoms were constipation, severe pain and inability to eat more than a mouthful or two of food at any time oh and the fact that he is tiny for his age.
It is horrible when you can't put a name to what you have got and when you have symptoms that can't/aren't being treated. I do hope they can come up with some answers and treatment for you soon and that you get some relief.

NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 8584
   Posted 2/26/2010 12:57 PM (GMT -7)   
Roni said...
I don't believe prednisone is a "way more dangerous drug than all". There are other drugs for CD that are just as bad, maybe worse, like imuran which can cause cancer and liver disease, and remicade-like drugs which can cause cancer in kids and fatal heart failure in any person with any type of heart disease.


I like how you left out the "...all but the most powerful of Crohn's medications". I wasn't even suggesting that the topic creator take anything stronger than mesalazine, but since we've moved up to the immunesuppressants and biologics, I'll address those.

For the vast majority of Crohn's patients, Imuran (or its sister drug, 6-MP) is a safe and well-tolerated drug. If you are going to get heavy-duty damage, such as bone marrow suppression or pancreatitis, then it will usually occur within the first several weeks of taking the drug and no doctor will ever give it to you again. Otherwise, Crohn's patients don't take Imuran at high enough dosages to get an increased risk of lymphoma, unlike say transplant patients. If you don't believe me, then maybe you'll believe the below site. Other medical sites worth their salt will say similar.

www.gpnotebook.co.uk/simplepage.cfm?id=1879441438&linkid=3466&cook=no

For the biologics, again they tend to be well-tolerated. The biggest danger is probably of an allergic reaction. They are not entirely risk-free, but compared to steroids they are a walk in the park, really.

en.wikipedia.org/wiki/Biological_therapy_for_inflammatory_bowel_disease#Side_effects_and_concerns

Steroids, meanwhile, come with a list of side-effects longer than your arm, both short and long term. So do most meds, but the difference with steroids is that most people will get them. Not every single one, but a good few.

junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 2/26/2010 2:50 PM (GMT -7)   
thank you so much for all the information... and sharing all of your stories.. i too pray for an answer...

1asalsa
Regular Member


Date Joined Feb 2010
Total Posts : 40
   Posted 2/26/2010 3:05 PM (GMT -7)   
June, you sound like you have the exact same symptoms as me when I first started. After colonoscopy, GI dr. said it was either crohn's or colitis, not sure which, but he put me on the hydrocortisone rectal suspension, and also mesalamine enemas. I had to do them both twice daily, and it took a good 3 weeks to work. Later I was able to go down to one a day, at night before bed. After a month or two I was able to discontinue the hydrocortisone one, but had to continue with the mesalamine one indefinitely. Eventually I moved on to other treatments, when they found out it was Crohn's, but at least this first line of treatment let me regain my life after the first 3-4 weeks! Is it possible you were not on the anucort long enough? I would also make sure they know how bad you feel; sometimes when you don't complain enough they don't realize how bad you really are.. Good luck, and keep us posted.
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