HealingWell
Search Close Search
☰

Help.......I'm fed up

Support Forums
>
Crohn's Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 1/8/2011 4:14 AM (GMT 0)
Hi

I'm new to the forum.

And here is my wonderful story.   In April I took an attack which I had left sided pain and blood and diarhea lasted 3 days. Went for a colonoscopy in May was told in June by a specialist that I had Crohn's, after taking Pentasa for a week got crohn's symptoms. Changed specialist who said it wasnt crohn's and sent me for a barrage of tests that all came back normal. Second specialist wanted another opinion sent me to a doctor out of town. First visit was 21/12/2010 scheduled a colonoscopy and an endoscopy on 21/02/2011. Follow up appt scheduled for 18/01/2011 since pains and D started up again. Family dr tried prednisone on two separate occasions for 5 days felt good for 3 weeks was nice. Dr's don't want to put me on anything at this point until after the colonoscopy.

I'm so confused the first doctor saw ulcers of the ileum and said crohn's, second doctor said it doesnt mean anything because the biopsies came back negative. Third doctor said that you can't always rely on the biops and wants to see the ulcers for himself because the description of the first doctor sounds vague and is described like mouth ulcers. (not sure what he meant by that.).

I cry almost everynight, i was off work for 8 weeks just recently returned and honestly still dont want to be there. I keep asking myself will things ever get better. My doctor keeps saying yes, but I think its just to try to comfort me. And all the stories I've read of surgeries and medications that cause miserable side effects or even cancer, really scare me. We weren't thinking of having children before this started and now I don't know if my wanting kids is strong enough to even try now. I'm scared to give my child crohn's or to cause things worse by getting pregnant.

I'm at that point where i honestly think there is no help out there for me.

can someone give me some coping ideas to get through this.

thank you sorry for venting.

 

Posted 1/8/2011 5:01 AM (GMT 0)
The only thing I can offer up, is that at some point we've all been where you are right now. Before I
was diagnosed I thought I was losing my mind and the doctor that I had then was of the same opinion,
he had me on anti depressants, truly believing it was all in my mind! That was 12 years ago now, but I
still vividly remember the feeling of total despair.

Please don't give up. Believe in what your body is telling you, and hound those doctors until you get
answers. I allowed mine to go so long unchecked that I obstructed, and for that I will never forgive
that doctor.

BTW hello and welcome, and please come and vent whenever you need. It's the one thing we are all
good at, and that's listening... Good luck!!
Posted 1/8/2011 5:11 AM (GMT 0)
Hello Daunting! I just was diagnosed as well and the constant bloody D and cramping feelings are terrible. You are on the right path by seeing specialists and people who can help you. If some of the meds helped you, you just have to keep advocating for yourself.

My kids have bowel problems and I am worried I have passed it along to them but we will also get through this. Apparently you only have a 9% chance of passing it along, 36% chance if it's in your husband's history as well. Reading all the items about pregnancy while having Crohn's makes it seem like it is more than possible to safely take meds and have a child.

Good luck!
Posted 1/8/2011 5:31 AM (GMT 0)
I had 4 out of 5 doctors betting that I had cancer. The 5th doc was my doc. He said NO WAY. I did have a Hemicolectomy. 14" of my colon and terminal end of the ileum removed. That's when they knew I had Crohn's. 3 months later, I went to the ER 2 days after returning to work, with severe pain in the upper right abdomen. Was told at the ER to come back tomorrow for an ultrasound of the GB. Went home, 2 hrs later 911 EMS took me to a different hospital ER. They did an ultrasound stat. I had gangrene of the GB and needed emergency surgery. Had a full open coly. In hospital 8 days. They blamed the Crohn's. 6 mo later, I had to have my abdomen opened up again and put mesh in. 23hr hospital stay, wound up in there 8 days. 6 mo later, abd pain and filling the toilet with blood. Crohn's said "I'm back" Had another colonoscopy, couldn't get into the ileum. Had to have an upper GI with a small bowel series. 17" of the ileum with 5 thumbprints. Crohn's. No surg. Put on Remicade. 6 mo later, severe reaction to the Remicade while on vacation in Las Vegas. Pain and swelling in hands, wrists, feet, ankles and knees.
The skin would peel off. Went to a Rheumatologist. He couldn't find anything, except a protein in my urine which was related to Multiple Myeloma or Waldstrom's disease. Cancer of the plasma cells. Went to a Hematologist/Oncologist and was tested for these cancers. I was told I didn't have them and not to worry about the protein. Went to my GI doc and he said I was having a reaction to the Remicade. Put me on high dose Prednisone for 6 mo's. tapering. (60mg) also percocets. Then I went on Humira for the past 2 yrs. getting along fairly well. Have flares and go on steroids for a few weeks, tapering and the flare is about gone.
I had 7 mm stones in both kidneys and had to have lithotripsy twice to remove them. All caused by the Crohn's.
I have diabetes, had emergency open heart surg. for an aortic aneurysm, aortic valve replacement and one bypass. I take 21 medications, 2 antidepressants are among them. When my Crohn's is flaring, my diabetes is good, when my gut is good, my diabetes is not great.

Anyway, getting back to your situation. I know it's frustrating when doctors differ. But each is a doctor is an expert in his field and has a medical opinion. Each can differ and openly. That's great because now your really going to find out what it is.
Sounds to me like it might be Crohn's, but let the experts do there job. That's why they get paid the big bucks. Like my doc. You might want to talk to your family doc or a psychiatrist for some medication to get you calmed down and get through this. You may not think you need it, but give them a try.

Wishing you well my friend. Let us know what it is. It isn't the end of the world, not yet. You're just beginning a journey, hopefully with a great outcome.

Rojon
Posted 1/8/2011 5:41 AM (GMT 0)
Hi Daunting and welcome to the forum :-)

I know it's all confusing the first time you get diagnosed and it's only natural to feel depressed, especially when you don't have a definite "yes" or "no" and the doctors are not willing to help.

First thing first I would try and get the pain under control. After that I'd look at all the stuff you put in your mouth and knowing there's something bad going on in your gut I'd try to eliminate everything that can irritate it even more. In fact, I'd probably try juice fasting for a day or 2 and after that I would slowly reintroduce what you normally eat. Remember to keep a food diary and think that what you eat today may cause problems tomorrow.

I have structuring Crohn's and it wasn't easy for me in the beginning and I thought my D was a terrible thing to have. Since then I've had a few obstructions and now to me D is a blessing and I no longer try to control it.
rolleyes

I think I read somewhere here that pregnancy can actually kick start your remission, so perhaps it's not a bad idea, but that said, you need to think that more often than not Crohn's runs in the family and there is an increased risk your child may have it too.

Hope that helps a little. Take care

wink
Posted 1/8/2011 12:52 PM (GMT 0)
Thanks for all your replies, some of which scared me!
I didnt sleep all night I had rumbling in my tummy and went to the bathroom at 5 and 3 times at 8. Now it is 830 and I'm starring to get the sweats. Third doctor too me off pentasa to see if it was that giving me the diarrhea, 3 weeks later here I am. He told me if it wasn't that I could restart it, only thing is I have a blood test on Tuesday next week and o don't want to mask any of the symptoms so I'm at a lost. The specialist said he can see ke on the 18 but dont know if I can wait that long.
I am so scared, everyone I know keeps telling me it's not the end of the world but for me it is. I feel as if I won't beable to accomplish anything anymore. After reading all of everybodies post I tend to think that there really is no hope. My life is going to be a constant battle even if I choose to have children will I ever be healthy enough to actually enjoy time with them. I do know a friend who has been in remicade and is doing ok for the past three years but even remicade scares me if the side effects.
There jaw been even days where I wonder if suicide is the answer. I have gone to councillors and talked about how I feel and most of them says it's normal and that I have a situational depression. I don't know if I can actually get through this at this moment I don't see much hope in the future. And even if I get better for how long. My family dr is at q lost for the amount disease that shoeless up on my colonoscopy in may I should not be having thus much symptoms does that mean my situation progressed too rapidly. All I can think of is my life is over. And if I would ever need the bag with crohns it doesn't mean I'm cured it could always progress somewhere else and I just found out I have a 3rd cousin who has severe colitis and where's the bag she had to get her stoma changed sobsurgery doesn't stop there

Sorry for venting again. I am so at a lost. When I asked my dr what he thinks it is he said he wasn't sure
Posted 1/8/2011 1:45 PM (GMT 0)
Sorry for your situation I was where you a re now about 5 years ago. It is hard but you can get through it, I have also had another healthy son since then who just turned 3 in Oct> turn Have you started taking probiotics? I know most of us do and most of us seem to get good results from them. I personally feel that the probiotic yogurt seems to be much more beneficial than any of the pill forms I have tried and much much cheaper. (stay away from activia it is full of sugar and low on probiotics) Plain greek style yogurt is a good place to start, read the label and make sure there are good probiotics in it and no additives or sweetners. Zoi is a good one. It's ingredients are Grade A milk, cream, non fat milk, milk protein concentrate, Vitamin A, Vitamin D3, and live active cultures(S. thermophilus, L bulgaris, L acidophilus, Bifido, lactis, Lrhamnosus, L casei). It is a bit sour, the flavor kind of reminds me of cottage cheese, you can eat it plain or add fruit or make a smoothie with it. I have been making my own SCD yogurt for the past few months and really isn't as daunting as it sounds I make a gallon of it every ten to 12 days so I spend about an hour or so a month, really not bad for the tremendous benefit I get from it. and the cost is less than $10 a month versus $30 for Align which didn't help nearly as much. Anyway, I have gone from having ten plus bowel movements on a good day to one or two. Seriously it sounds too simple but try it for about 2 weeks. Also try to cut out sugar, atleast for a while and all or as much processed stuff as you can, fresh meat and veggies with fresh plain herbs spices and salt. It is hard but worth it till you figure out what your triggers are.
As far as the meds, do what you think is best for you, research the meds, take your time, It's not like you have to make a decision today, tell your doctor you want to look at all your options. Lots of dr.s are strarting with the top down approach (remi, humira, 6mp etc.) While in some cases this may be necessary some people do fine on Asacol or Lialda for years. Try the diet changes, don't give up. and remember, there are scary stories on here but we are on here bc we are sick right now lol, when we are feeling good more than likely we are out living our lives not sitting here telling horror stories, we all go through flares and remission. Some have multiple surgeries while others have none. Each of us are different, and everyones disease takes a different course. This is a good place to vent and find advice and support, but don't think that bc most of us on here right now are sick and complaining that we all feel like this everyday. Some achieve remission for months at a time some I think have gone for 20 or 30 years. So Take a deep breath and hang in there. Hugs
Posted 1/8/2011 2:24 PM (GMT 0)
Hello and Welcome.

I wanted to post some calming thoughts for you. First please remember everything you read about Crohn's is a POSSIBILITY but not a PROBABILITY. Meaning that most patients don't get all the symptoms you are reading about. Most patients are out in the world living their lives without giving CD a thought except to take their daily medication. The people posting are the exceptions to the rule, or the ones like me, who have had the disease for years and just want to give encouragement and support because we have been there and done that.

Second, we have all been there. In the beginning it can take time to get the proper diagnosis and to find the right medication(s). But once you get through that, MOST CDers go on to live relatively calm unremarkable lives. You need to realize that the disease has been running unchecked in your system on a microscopic level, possibly for a very long time, without you even knowing it. It will take time to get things calmed down, but once you do, your life can return to a new normal.

For me, I self diagnosed at 13, but was treated like a crazy kid, even though there was a strong family history of the disease. Fast forward 10 years and I finally got a diagnosis. It took another 10 years to undue the damage that had been done. Not all of those 20 years were bad, but I certainly had some bad spells. Now that things have calmed down and I have the right combination of maintenance medications I have very few bad spells and do almost everything I want to do without too many limitations.

Lastly, let the doctors do their tests. If it is Crohn's then you need Crohn's medication, but if it isn't then you need some other type of medication. Don't stop until you feel better! You know something isn't right, so keep pushing. When you are feeling better you will be able to sort out what you want for your future. Right now you are still in a state of flux and your world is spinning. You can't possibly make all your life decisions about children and what have you while you are going through this. Give yourself some time to just live with this and adjust. Lots of people have full lives with Crohn's disease, and every other type of disease for that matter. So just take a moment and breathe. You will get through this. And we are here to answer any questions or if you just need to vent.
Posted 1/8/2011 2:55 PM (GMT 0)

Zanne said...
Hello and Welcome.

I wanted to post some calming thoughts for you. First please remember everything you read about Crohn's is a POSSIBILITY but not a PROBABILITY. Meaning that most patients don't get all the symptoms you are reading about. Most patients are out in the world living their lives without giving CD a thought except to take their daily medication. The people posting are the exceptions to the rule, or the ones like me, who have had the disease for years and just want to give encouragement and support because we have been there and done that.

Second, we have all been there. In the beginning it can take time to get the proper diagnosis and to find the right medication(s). But once you get through that, MOST CDers go on to live relatively calm unremarkable lives. You need to realize that the disease has been running unchecked in your system on a microscopic level, possibly for a very long time, without you even knowing it. It will take time to get things calmed down, but once you do, your life can return to a new normal.

For me, I self diagnosed at 13, but was treated like a crazy kid, even though there was a strong family history of the disease. Fast forward 10 years and I finally got a diagnosis. It took another 10 years to undue the damage that had been done. Not all of those 20 years were bad, but I certainly had some bad spells. Now that things have calmed down and I have the right combination of maintenance medications I have very few bad spells and do almost everything I want to do without too many limitations.

Lastly, let the doctors do their tests. If it is Crohn's then you need Crohn's medication, but if it isn't then you need some other type of medication. Don't stop until you feel better! You know something isn't right, so keep pushing. When you are feeling better you will be able to sort out what you want for your future. Right now you are still in a state of flux and your world is spinning. You can't possibly make all your life decisions about children and what have you while you are going through this. Give yourself some time to just live with this and adjust. Lots of people have full lives with Crohn's disease, and every other type of disease for that matter. So just take a moment and breathe. You will get through this. And we are here to answer any questions or if you just need to vent.

I've been lurking these forums for quite a while, just never bothered for some reason to register till now, and I have to say your posts are amazing.
Posted 1/8/2011 3:21 PM (GMT 0)
Daunting, try not to read too much into the bad cases. Every case is completely different. You should definitely get on some depression medication for a few months and see how you do. It's really great that you are seeking out help. Keep posting here so we can talk with you and walk you through things.
If you are hurting go on the medication that helps you, you don't have to wait. You can always get another blood test. I know how you feel though, wanting the results to be 'pure'. But if you are hurting, help yourself.
Posted 1/8/2011 3:51 PM (GMT 0)
Hi Daunting and welcome to Healingwell. Don't give up, keep fighting the good fight until these docs figure out whats going on with you.

I also want you to know that if it is Crohns, it is not a death sentence. I have lived with this disease for more the 35 years. During that time I have had 3 daughters all born after my diagnosis. All are healthy and happy. I have been at the same job for over 21 years and also have a wonderful husband who loves me thru it all.

I am one who once enjoyed a nearly 20 year remission. One tip I will give you that is something Crohns has taught me is that you must always take your maintenance medications. And you should always consider diet and medications as complimentary of eachother.

Now for your current situation, keep pushing these docs until they can figure out whats going on with you. One test I would ask you to talk to your GI about is the Pill cam test. Sometimes Crohns is in a area the scopes can't reach. This test is really pretty easy too. You just swallow a pillcam and wear a monitor. The pillcam takes pictures of your digestive tract as it goes thru your system. This test helps to see the small intestine where the scopes can't reach and where Crohns can hide. This test has helped many to finally get a diagnosis.

One other suggestion is that you stay on very bland and easy to digest foods for now. I personally follow a low residue diet all the time. This diet is usually used for those who are flaring, and it might help to quiet your bowels down some. Although this diet is used for those who are flaring, I find it agrees with me most, so I stay on it all the time. I am currently in remission too. Google the diet and get some ideas. Maybe a milder diet will help too.

I will keep you in my prayers and hope that you get some answers soon. If you are still feeling that bad, you might want to ask your docs about putting you out of work a little longer until they can figure things out and get you feeling better. Once you get the diagnosis and get the right meds for "you", you will start to feel much better. Hugs and keep venting to us, we do care!
Posted 1/8/2011 3:54 PM (GMT 0)
I have. Spoken to my family doctor about the probioics yesterday and he said to wait until the tests are completed. I understand what all of you are saying that really I don't know what my future holds, but right now it seems pretty grim. Everything is spinning out of control and I don't even have control over anything. As for food I don't touch greasy foods or fatty foods or Anything with spice I even tried a bland diet. Only time I felt good is when my family tried me on prednisone for 5 days and I felt good for 3 weeks then back to this again. Right now no matter what I eat goes through me. Last night I had constant rumbling in my intestines and diarrhea this morning I haven't stopped frying since I woke up. I did read that some go into remission for long periods of time but seriously how many of you have had remission for a long period if time and how many of you have not had a surgery? My family sometimes must think I am naive he told me a few weeks ago that people with crohns hardly ever have to have the bag unlike crohns. I've been reading contrary to this everywhere I read. Somedays I regret trying to learn about this disease maybe I wouldn't be so stressed out not knowing about it at all
Posted 1/8/2011 4:21 PM (GMT 0)
Well Prednisone is a med we all love to hate. It is a med that quiets down the inflammation the best. Though it does have some bad side effects for some. I personally want Prednisone when I am flaring as it works best for me and works rather quickly. I know that don't want you on meds till all your tests, but I know it would get you feeling better.

There are so many members on this forum, we have thousands, and there are thousands more who aren't on this forum and very few of them have bags. I won't lie its not a pleasant disease to have, but again ITS NOT A DEATH SENTENCE. Once they figure out its Crohns or any other illness, you will start treatment and feel so much better in time. Also, you need a Gastroenterologist not a family doctor. The GI's are the specialists who treat this disease. I would also recommend you stop googling if it is stressing you out so much. Trust your docs to figure out whats wrong and then move forward. Hugs~
Posted 1/8/2011 8:39 PM (GMT 0)

Nanners said...
Well Prednisone is a med we all love to hate. It is a med that quiets down the inflammation the best. Though it does have some bad side effects for some. I personally want Prednisone when I am flaring as it works best for me and works rather quickly. I know that don't want you on meds till all your tests, but I know it would get you feeling better.

There are so many members on this forum, we have thousands, and there are thousands more who aren't on this forum and very few of them have bags. I won't lie its not a pleasant disease to have, but again ITS NOT A DEATH SENTENCE. Once they figure out its Crohns or any other illness, you will start treatment and feel so much better in time. Also, you need a Gastroenterologist not a family doctor. The GI's are the specialists who treat this disease. I would also recommend you stop googling if it is stressing you out so much. Trust your docs to figure out whats wrong and then move forward. Hugs~

Eaxctly! When I was first diagnosed my GI said to me "When you go home don't look to the internet for information, ask us (his team), or your GP"

Obviously forums like this can give you a better insight, but try and stay away from Google. tongue
Posted 1/8/2011 10:20 PM (GMT 0)
When people are doing well and in remission, they aren't as likely to be posting online, looking for answers and support. I had a flare in 2003, which is when I joined here. I went into remission and was even off all meds for 7 years (I wouldn't recommend that). I just started another flare and came back. I didn't post here when I was in remission. So you're seeing the bad and not the good. Remission is possible and a normal life is possible. I have been where you are. I got very depressed after I was dx. I thought my life was over. But it wasn't. I'm handling this flare much better. I know what's going on, I have accepted that this will happen every so often, and I have a great GI to help me treat it. Once you get a firm dx and get on a treatment plan, life will get better.

I'm not sure about the biopsy thing. All of my scopes (even one while in remission with no visible Crohn's), showed Crohn's in the biopsies. I just had a scope yesterday and haven't gotten those results back yet, though.
Posted 1/11/2011 12:26 PM (GMT 0)
Thank you all for posting, it means alot to me to have a community who is willing to share.

I just went for blood tests this morning to see if I have celiac and a few other things. I am almost positive I don't have celiac I've already went through those blood tests before and had the same result each time. I even had a biopsy in 2005 taken and was found negative.

I do have a colonsocopy in February and an endoscopy and he is going to take another biopsy to be certain. I am actually getting pretty anxious for the colonscopy but extremely worried about what the results will be.

My family doctor said with what the first colonsocopy in May 2010 showed he finds it odd that I have so much symptoms and that really worries me, has it gotten worse since they have not been treating me properly, my family doctor says it does not progress that fast. I do plan on asking the specialist on January 18.

As for biopsies, I have a brother in law on my husband's side that has had Colitis and his biopsies came back negative for the first 10 years, he is now wearing a J pouch.

thanks again

Posted 1/11/2011 3:28 PM (GMT 0)
Well Daunting there is no easy answer for you at this time. Do you have any good days or days tha ar better than others? One thing you may want to do is keep a diary of your diet. I myself am guilty of not doing this and have recently paid for 2 big mistakes, not keeping track of foods that trigger or upset my crohn's, and not staying on my maintenance meds.  (It resulted in a 2nd resection and now a bowel leak which has me on IVmeds and TPN. also no food or drink by mouth for 3 months. If that don't work I go back in for surgery for  a temporary bag and after a few month a reversal surgery.)This may help you get thru the period in between ur testing to stay as comfortable as you poosibly can. I have best result with prednisone during flares but it is an evil drug. Too many side effects to be safe as a maintenance type drug. Remember to take control of your body, what I mean is dont let crohn's or whatever you get diagnosed with  run ur life. You can find ways to do things u enjoy but may have to work around your syptoms. Make sure you get exercise. even if its just  a lil at a time, its one excellent way to releive stress. One of my safe foods is chicken broth. In a bad flare (which usually is a moderate bowel obstruction) I may have broth and jello for 10 days until i feel sure that a solid diet will not make flare come back. Be patient with your drs. but remain your own healthcare advocate. To get my diagnosis I threatened my dr that if he sent me home with reflux meds that i would die b4 i paid for the visit and i blew up about all the many drs telling my there was nothing wrong. In fact I  had a colonoscopy in 998 they reached the terminal ileum they would have seen all the scarring from all the flareups. So in 2004 orderedbarium xray it was crystal clear and i had to bring him the xrays. when I arrived he told me I have crohn's and handed me some more papers and sent me to mayo to meet my surgeon because it was a complete bowel obstrcution and needed to be removed immediatly. I know this sounds horrible to hear all these stories but the disease is very complicated and for the most part none of us are the same so what happens during your flareup may not happen during mine. I wish you the best on your journey to finding out what is causing this. Try to find something positive in everyday so when you start to get down you can pull yourself thru
Posted 1/11/2011 5:33 PM (GMT 0)
Hi again and thank you for your reply.
I do have some 1/2 decent days while others I don't. As for food I haven't found any triggers yet. I have stayed away from greasy food fatty foods foods high in fibre and as much gassy foods as possible and spicy. I am honestly scared to eat my specialist so far said to stay away from fibre for now.
Can someone explain to me what they experience during there flare and how long does it last. I understand everyone is different just like to have an idea.
I myself differs from one day to another. Some days I have incredible rumbling and gurgling noises which end up in watery stools other days I have pain on left and right and sometimes above bellybutton but with Moore diarrhea. There done dats food will go through me and others where I eat the same thing it don't. Right night I'm having a crab sandwich don't know how that will do. Does any of you really feel good Somedays ????
Posted 1/11/2011 5:33 PM (GMT 0)
Hi again and thank you for your reply.
I do have some 1/2 decent days while others I don't. As for food I haven't found any triggers yet. I have stayed away from greasy food fatty foods foods high in fibre and as much gassy foods as possible and spicy. I am honestly scared to eat my specialist so far said to stay away from fibre for now.
Can someone explain to me what they experience during there flare and how long does it last. I understand everyone is different just like to have an idea.
I myself differs from one day to another. Some days I have incredible rumbling and gurgling noises which end up in watery stools other days I have pain on left and right and sometimes above bellybutton but with Moore diarrhea. There done dats food will go through me and others where I eat the same thing it don't. Right night I'm having a crab sandwich don't know how that will do. Does any of you really feel good Somedays ????
Posted 1/11/2011 5:54 PM (GMT 0)
Hello Daunting,

I am new as well and noticed your post. I think more than anything, after having read these posts that finding a doctor who you trust is key to helping manage your disease. My doctor had diagnosed Crohn's before the scope, during it he said its definitely Crohn's and after the biopsies came back positive for Crohn's. The confidence in his diagnosis and treatment plan gave me quite a bit of confidence that we would work through this together and adjust over time based on what I wanted. Although I respect the opinions on this thread, staying away from Google and not taking an active role in learning about that which is prescribed or what you will be putting into your body I think is not the right course. To each his own, but for me, merely taking their word for it isn't always going to give you peace of mind. The simple truth is, auto immune disease and treatments can be quite scary depending on each individual, family history and possible side effects. Does it mean you shouldn't try, no. Does it mean you should just take whatever your doctor prescribes blindly, in my opinion no.

I travel for work and the way I got around and through it was by not eating for days. I knew if I ate I would be in pain, the anxiety would build and I would be bleeding, cramping, sweating and in the bathroom non stop till returning home. As my doctor eventually said, the disease is awful, but that is no life to live. Looking at these posts, we've all been there and we are all getting through it it seems differently. I went to my doctor after being on Humira and said I'm done...the cycle of drugs stops now. He looked at me like I was an idiot who'd spent too much time on the internet. He explained to me why we should try Remicade, how because it ties back into mouse proteins and not human etc etc etc. I was like look, I am going to try something off the wall here and although you may think I am nuts, I need some support here. He finally agreed and I've been in remission for several months and we'll find out shortly (5 months) with my next scope how its going. If the disease is still breaking down my system under the covers so to speak then I will need to hop back into the drugs and find something that works again. This is all a round about way of saying, it takes time. I spent three years on 6 different drugs, in an out of hospitals and miserable one minute, in remission the next. You have to hang in there and realize that your health is something that will take time to figure out with the right doctor you feel comfortable with, but stress and anxiety lead to more and more issues with this disease so hang in there and you'll get to where you need to be :)

I have had flare ups last two to three weeks, sometimes only a few days. Lately the past 4-5 months I have not experienced any. Stay away from alcohol, drink 1.5-2 liters of water a day. Anything with caffeine will dehydrate you like alcohol and that is not what you want to have happen with our condition. High protein diets are good, I am a vegetarian so I get a lot of protein from soy and whey, but I avoid all white foods (flour, rice etc.) and go to whole wheat, brown rice etc but those tend also to be higher in fiber so may not work for you. Keep a journal and write down everything you eat, it can be tedious, but will help you learn your triggers. Spicy foods are out as well for most people. Hope this helps.

Post Edited (Navycross) : 1/11/2011 10:58:29 AM (GMT-7)

Posted 1/11/2011 6:13 PM (GMT 0)
Daunting,

I'm sorry you're in so much discomfort. I'm one who posts and reads here regularly, since I joined last summer in the midst of a flare. My illness is not as severe as many here, and I haven't had any surgeries in 11 years of symptoms.

I've had 3 colonoscopies, 2 endoscopies and 2 barium swallows/SBFT. All of the scopes showed inflammation. None of the biopsies were conclusive for Crohn's vs. ulcerative colitis, but since I have an inflammation pattern consistent with Crohn's, that is what my GI and I call my inflammatory bowel disease. The meds I take would be the same if I had been given an ulcerative colitis diagnosis (which I did get at first) - what's different is my perceived cancer risk (lower with CD) and the choice of Pentasa vs. Asacol (Pentasa is active higher in the digestive tract than Asacol, but they are essentially the same medicine).

Here's a story about someone who had horrible diarrhea w/blood etc. and did NOT have Crohn's or any other inflammatory bowel disease. My dad came down with a stomach virus about 3 years ago. Like everyone else who had the same bug, he had nausea and diarrhea for a few days, then got better. Except the diarrhea did not go away....for 2 years. He had 2 scopes. No inflammation was seen visually or on biopsy. He had blood tests. He had stool samples tested for occult blood, bacteria, other things. The only diagnosis he got was that he was having an extended viral reaction and it would get better someday. He eliminated all raw vegetables from his diet, because they bothered him. Now he does eat salads, etc., just not as much as before. He does not believe he has Crohn's, even tho I do and a cousin on his side of the family does also. Who knows. The thing is he feels fine now.

I hope you are able to find foods that don't bother you. You might consider taking immodium to get some relief from the diarrhea. Don't take any NSAIDs if you have pain. An easy thing to eliminate that is a frequent cause of bowel distress is lactose - take lactase pills with a meal that includes dairy and see if that helps.
Posted 1/11/2011 8:59 PM (GMT 0)
Hi Daunting,

I'm really sorry you're going through this. Please try to understand that you are probably going through the worst period you ever will with this disease, whatever it turns out to be. Whether it's Crohn's or something else, it's important to know that anxiety makes it worse and reading about all of the worst case scenarios here and elsewhere on the internet will certainly increase your anxiety.

Please don't apologize for venting on this forum, that's one of the most important uses of this resource. Feel free to vent all you need to and ask any questions that someone here might be able to answer for you. We all know how not knowing what is wrong with us is enough to drive us insane and we've all been there so we really do understand what you're going through. The doctors really will find the answer and you really will start improving when they get your treatment customized for you.

My Crohn's presented with a bowel obstruction that did not require surgery. I've only been in the hospital a few times so far and most of the time I am in complete remission. Once I identified my trigger foods (beef and pork in my case) and got the right meds, I was able to live without symptoms most of the time. I do have occasional flares and am almost always able to get them under control in 3 to 7 days by going on a liquid diet (mostly liquid vitamins). So you see that even if you do have Crohn's disease, it is not necessarily the horror that you have been thinking it is.

I hope you get a firm diagnosis very soon and if it is Crohn's, please spend the time here asking questions and learning what you need to do to identify your trigger foods. I hope you are diagnosed with a curable condition but whatever it is, you can beat it.

Hang in there,
✚ New Topic ✚ Reply