I am so scared

Hmmm I find it hard to believe that foods dont aggravate a flair.. They certainly do mine. Ive eliminated a bunch of foods that cause signifigant pain to me.
I was warned of 3 things when I left the GIs office after the pill cam. .. 1 If I pass blood.
2 If I start to run a fever
3 If the pain becomes accute, persistant and sharp.
Other than that they said hang in there until the tests come in. So far I have been able to manage the pain pretty well.. Of course I find things that I cant eat on a regular bacis.. This weekend it was a corn bead muffin that triggered it! Who would have thought that something soft and unassuming as a corn bread muffin would cause such grief.
No fruits or vegies cooked or uncooked at all! I dont eat in the mornings or during the days so I dont have to go to the bathroom at work much. Water only. Then I eat supper at home... All of that is gone by morning. So I feel your pain!
Its is a constant pain.. but as long as I am so very careful about what goes in my mouth and when Ive for the most part kept it to a constant level 3 pain 1 being the least 10 being the most. 1 fried chicken finger last week at lunch time curled me into a ball for about 30 min at work. That went on my No Nos list right away.
Plus a couple of times Ive done all liquid when I felt particularly dreadful. But a McDonald milkshake was really a bad choice for supper that one night. All that has happened with me leads me to believe that food choices really make a diffrence what happens when I am flairing.
You need to get the GP to write you something for the pain. My surgeon gave me percoset since the hydrocoden family does not work on me. When it hurts really bad I take 1/2 of one. They tend to add to the night sweats so I dont like to take them often, only when it really hurts bad.
Start writting down everything.. all of your symptoms. List them and write them down so you dont forget anything when you see your GP and GI. My surgeon now smiles when he walks in the room and asks for my new list. It makes things so easy and I dont forget to ask something and have to call back later. Everyone gets their 15 mins with their doctor, so I maximize mine by listing everything befor I go in.
Fear not.. If you are passing gas, dont have a fever, passing blood,and the pain isnt constant and sharp, chances are you are just flairing. If you have any of those things its time to go to the ER at least thats what they told me.
Keep us posted! Im counting down the days till I get my results too.
Heather

I think having a list of questions is a great thing to do! Also prednisone can be great. If it's effective for you and you have IBD then you just need to be on it long enough to fully calm down your inflammation, then you can come taper off it and won't need to take it again until you get another flare up, if at all.

As for the other stuff For the most part, when it gets to the point of needing
to go to the hospital it's pretty obvious to myself and the others around me! The one thing to look out for though is dehydration. I can't count the number of times I end up in hospital with acute dehydration only for them to lecture me about how I should have come in sooner. Dehydration doesn't seem like a serious enough reason even to phone your doctor about and it kind of sneaks up on you unlike acute pain. I only ever realise it's a problem when I get to the point that I can't keep any water down whilst diarrhea continues to shoot through me like it's leeching out of my organs haha. Then when I get to ER and I'm several IV bags down and still as dry as a bone with a heartrate that's insanely high...they tut at me and tell me I should've come in much earlier. Maybe one day I'll learn! Don't let this worry you though, just make sure you're replacing any fluids you lose and you'll probably never need to worry about dehydration!

As for foods, I think the thing is that foods have a -limited- effect on IBD - you can't control it by diet alone but I think everyone has some foods they can't handle. My old GI used to be reluctant to tell people not to eat certain things because he used to point out that IBD is not a food allergy and people can get bogged down in trying to control it through diet alone. I won't try to give you any proper advice based on my own eating habits because I'm most prone to inflammation in my duodenum, stomach & upwards and seem to have a lot more eating issues than those with lower down inflammation which is the vast majority. I will tell you though that even if you find certain foods are definate no-goes we all slip up occasionally and eat them anyway....and then suffer for it - but I think that's being human!

From what I understand the Pill Cam will show damage inflamation and other issues. My surgeon who sent me to the GI for the pill cam said from a surgical stand point that the pill cams dont give them exact locations for surgery. But it will show damage blockages etc.
I'm a bit diffrent from you because I started this with fistulas and surgery. So for 7 months I was dealing with a surgeon. 1 month after the 2nd surgery I developed a whopping pain in my side and diarrhea 20 25 times a day for 10 days. I lost 10 pounds in 10 days. My regular NP thought that it was C Diff because of all of the antibiotics I was on for the abscess and fistula. She ran a C Diff test but treated me for it befor the results came back. With in 3 days of being on Flagl the symptoms went away. I was back to normal with only a slight pain when I ate the wrong thing like raw vegies. (salads)
Then the second fistula poped its head up in November. Because of my job I couldnt have that surgery until 3 days after Christmas. In January I started to complain to my surgeon that I hadnt had a solid bowl movment since early Dec. He couldnt do a colonscopy until the 3 inch long inch deep wound had healed from the fistulectomy. So when that healed we did that, followed by the ct scan followed by the pill cam and blood work.
When I questioned the NP from the GIs office about the flagl making the symptoms go away.. she said that its one of the antibiotics that they use to treat crohns infections. So where Marie was thinking C Diff.. it helped in another way and gave me some relief for a little while.
Just hold off on thinking of major life changing kiddo. Honest you can do anything you want to! Hell I was working for 2 weeks with a rubber cutting seton hanging from my butt! And if you think the pain in your side is bad.. OMG you never want a seton!
Oh BTW have you been tested for C Diff? Just asking because it causes the same symptoms as other intestinal diseases.
The positive side of all of the tests I have had.. There is nothing wrong with my overies, kidneys, liver, spleen, panceas, galbladder, colon, appendix, bladder, heart, lungs, no cdiff or bacteria. So I try to look at it positivly that at 52 those things are free and clear of any problems! Only body part I have left that the issue can be in is the TI! Thats what the surgeon said after the test he ran and why he sent me to the GI.
You should come to thursday night crohns chat night from 6-9 est. we have a nice group that chats about issues. You might find some answers to questions you have. Hope to see you there
Hugs
Heather

Prednisone is not something you take when you feel bad. It is a medication that needs time to work - a 5 day burst is not it. I don't know what your GP has prescribed, but my steroid experience for Crohn's, for example, was 60 mg daily for a month, then tapering down over another 10 weeks.

Breathe, Daunting, breathe. I don't know how many times we have to tell you this. But UNTIL you get on some kind of treatment, things are GOING to be out of control. Sometimes also folks have problems with Ensure as it might be too sweet for them.

Have you tried to call the docs and talk to them? You really need to get onto some kind of treatment. Hopefully being Prednisone at first, to quiet things down. Prednisone should be used for a period of time like kazbern described. A week is not going to be enough. You need to be on it awhile to quiet the inflammation down. So hopefully your doc will give you something more for longer term when you see him later this month. Hugs!

Well like you I have not been treated yet.. so the answer is I havnt had a solid BM since Dec. Other than an occasional constiaption that is like a champagne cork.. when it passes I have screaming diarrhea for 2 days after. So like Nanners said.. until you/me get the proper treatment the answer is no the D does not stop. Im counting down the days now til the GI visit! 5.5 left for me! Just cant wait to find out what the deal is!
The sigh of relief is they told me in the begining when I turned the equiptment back in from the pill cam that if they found anything really bad that they would call me asap! So no calls from them is a great thing! Im sure your GIs office is the same and if they had found anything really bad you would have already heard from them. So No News Is Good News for both of us!
Hugs
Heather

get back to that 2nd GI, or pull up the old entocort prescription and refill it.

Hi

Your not the only one who is confused.

In 2005 i was diagnosed with diverticulosis at the young age of 25.

In April of 2010 I had what they called a diverticulosis attack and was sent for a colonsocopy in May 2010. Colonoscopy came back clear except for the terminal ileum which he was able to see 10 cms ( i was told it all depends on the length of your colon, and how far they can see in your ileum). Terminal ileum came back with small ulcers and non specific biopsy for crohns. He sent me for a barium swallow which came back inconclusive. Doctor did not have the greatest bed side manner only took 2 minutes with me when he gave me the news about crohns. (as you all know i worry alot so my family doctor felt I should see another Gi).

In August of 2010 foung another Gi. This gi felt the ulcers were too small for crohn's and stopped my meds. He sent me for a CT scan and several blood tests all came back inconclusive. He felt I needed a pill cam. Around here there is only one doctor that does that procedure so the referral was sent.

In December of 2010 I met my new GI (my current one). He sent me for a colonosocopy which I had in February. Colon once again came back clear, terminal ileum did not change (same ulcers were found), he also did the upper gi endoscopy at the same time, mild inflammation was detected but non specific. He felt that none of that said crohn's. So it was time to be sent for the pill cam. Pill cam was on April 12 now a waiting results. While i was at the hospital for the pill cam he came to visit me and said after further clinical correlation he thinks i have the start of crohns' but we will know more after the results from the pill cam are in.

As for meds. I was started with pentasa followed by entocort by my first GI, then taken off entocort by my second. Third doctor changed pentasa to salofalk and I'm on 8 a day we started with 3. I'm either thinking that I am getting really worse or the salofalk isnt reaching where the inflammation really is.

So thats my story, now you know why I'm scared and fustrated. I feel as if I am on a roller coaster with no end in sight. Even my family doctor is feeling fed up, he doesnt know why they are taking so long to diagnose. Lets hope that my next visit will be the one that I get help. I do plan on asking my family doctor to prescribe enough prednisone to get me through till the appointment and then i will most like ask the Gi for entocort again or something else depending on what he says.

I feel as my life has been turned inside out, and don't know what to do. I'm starting to panic.

I'm sorry I forgot to mention something in my last post.

The 3rd Doctor confirmed that I do have diverticulosis as well but very minor. He said I could of had an attack back then because the pain was on the left. But the colonosocopy in advertantly found crohns before it was exaberated.

I live in Canada. As for the 8 hours of the pill cam, apparently here it is 12 hours, they started using a new pill as of January 2011 that takes pictures for 12 hours and not 8 and it takes more pictures per second than it use to. I am greatful for that part because I think the pill went way too fast through my system it was out of my body in approximately 24 hours. As for calling me if he anything scary were to show up, I dont think he has the chance to look at it. He left on Vacation a few days later and only came back on May 2, and he is the prefers looking at his own patients results and not a radiologist as some hospitals do.

To be honest I'm a little worried about what the pill cam will show or won't show. I know I don't want any damage but if there is no damage I am afraid that the doctor will not want to start treating me. I really don't feel good these past few weeks and just want my life back, even though I think that will be almost impossible.

 

Same here my colonoscopy showed a few diverticulum which I was told is quite normal in adults. Mine was both on the acending and decending colon but not diverticulitis at all. Nothing to cause the pain that I have. I actually woke up while he was inspecting one with the cam. I thought how cool to see it then fell back to sleep. But I got to see the pics he took with the scope a few days later.. way neat!
The pill cam takes 2 pics a second. It should be thru and done in 8 hours with normal digestion. But hey with us... I guess it makes it thru even sooner!
Be careful what you wish for.. Im dreading any meds at all! I have made it 52 years with not so much more than asprin! Last year I had my first IV my first second and third surgey a pile of pain pills and antibiotics. I Dread the idea of having to take anything at all. I just wish this would go away on its own! Sadly I am no better than I was in December. So I guess I have to take something. Change is good I have alway adapted to what ever I have been delt.. So we will see what we will see.

Wow thats amazing! Must not be in this country yet! The best we have is 3 pics a second for 11 hours! Wish we had that here!
Yep I understand my hair is weak and so are my nails. Lost 40 pounds. But at least I have figured out foods that I can eat that dont hurt me too much. So I have the weight loss slowed down abit. I lost 10 pounds in 10 days at one point. Im not certian but Ive got some joint issues now that I need to ask them about next week.
My mother died of colon cancer and now I am relatively certain that she had corhns that went untreated for years... and ended up with the cancer. Severe RA and the Doctors told her for years that she had a spastic colon. Of course back then the best test they had was a barium enema.
You cant change it .. you just have to adapt to it. Right now we are planning our next vacation. Cruises and Disney.. where there are lots of bathrooms available are the right choices now. So we will just adapt.
My ex's aunt lost her colon to crohns at the age of 25. She went on to have 3 children and actually lecturs to people about the disease and how you can have a normal wonderful life living with crohns. I never imagined that I would suffer with it 25 years later after meeting her.
I guess shes in her late 60s early 70s now.
You will adapt and you will get treatment and you will have a good life inspite of it all.
The cop across the street from me has a temp colostomy bag right now because of diverticulosis that went really bad. He nearly lost his bladder too because of the infection. As Ricky says.. It could be worse I could have cancer and be dying. So hang tight it will get better!
Hugs
Heather

Good grief Daunting!!! I have had this darn disease 36 years and taking lots of meds and had surgeries. I am still here and doing well. I have had a full life with Crohns and so will you once you quit worrying about all the what if's that are more than likely NEVER going to happen.

I agree with IAmtheWalrus and others who have told you to relax (although I know that can be hard). The doctor on that video link is MY doctor, and he is AMAZING. He one of the best IBD GI's in the world, and what he is saying is not crap. I was diagnosed a year and a half ago and had an awful time at first, (steroids did very little for me) and I ended up in the hospital for six days. But, just three months after that I became pregnant with our now eight month old girl (while on Remicade and Imuran), and I am doing great. It's hard for me to believe I even have Crohns. I know that I will probably get sick again, and in the beginning I was really worried, but you will get stronger, and things will get better. Like my mom always says, nothing ever stays the same. You will not stay this way forever. Please don't give up on your dream of having kids if that is really what you want. You CAN do this!!!!