can't stop crying.. just want diagnosed

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.

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.

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

oh leysa... i am so sorry...hugs to you too..

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.

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.

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!

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.

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.

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)

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.

thank you so much for all the information... and sharing all of your stories.. i too pray for an answer...