Have my diagnosis... I think.

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 3/12/2010 5:51 PM (GMT -7)   
I had the endoscopy on Tuesday, where they pushed the pill cam through since it got stuck the first time. the dr just called.. my head is spinning...my dr went on vacation and didn't even tell me.. this 3rd year resident assisted in my surgery and he has been calling me.. I really like him alot. He explained to me that he looked at my scans and I have severe ulceration in my small bowel, the section they could not see. So with the ulceration there, and in various other parts along the colon and the rectum, he thinks Crohns. He spoke with one of his colleagues who looked at the scans with him and he agreed with a diagnosis of Crohn's. They called in a medicine tonight, a steroid, entrocort?? If it works, than that confirms the diagnosis.. if it does not work its back to the drawing board to find out why I have such severe ulceration. If it works, I have to go back for a long term treatment plan..he reminded me that there is no cure, just treatment. He also said that eventually I will get worse if its crohn's because the body always declares itself with a much worse symptom..I am not sure what he means.. I have been pretty sick, have lost almost 20 lbs..but reading your posts.. I know it can be worse.. just guess I didn't understand about declaring itself.

I think I will still keep my second opinion appointment.

Any thoughts.. I know I wanted a diagnosis but kind of reeling from all of this and being told over the phone..just kind of in shock.

Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 3/12/2010 7:02 PM (GMT -7)   
I am so sorry that it has been confirmed that you have Crohn's. I was actually relieved when I got the diagnosis because I had been suffering for over 25 years and was glad to have a name to put to my suffering.

The pill cam has been great for looking at the small bowel. It is fortunate that it was developed because many like you went undiagnosed for a long time before the development of the capsule endoscopy.

Hopefully the entocort will help relieve your symptoms!
Moderator Crohn's Disease  & Osteoarthritis Forums
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, asthma, severe allergy and a host of other medical problems.
 


Grandpato2
Veteran Member


Date Joined Dec 2009
Total Posts : 681
   Posted 3/12/2010 10:05 PM (GMT -7)   
A positive diagnosis is good in the respect that you can now treat the disease and slow it down or maybe put it in remission. If left undiagnosed it would just continue to cause more and more damage. Keep the 2nd appointment. Continue here to research Crohn's and go armed with information and pertiant questions for the dr.
Male, 54 years old with Crohn's since 15 years old, diagnosed at age 46. Terminal ileum resected 2002. 5 months of remission. Crohn's has now been active since early 2003. Had a gall bladder removed Nov. of 2009. Currently on Remicade every 8 weeks, Nexium, Iron, B-12 injection every 4 weeks,5-asa Asacol, Morphine Sulfate as needed for pain. Cymbalta for long term pain control. 5-asa Salofalk, Entecort, Imuran and Prednisone in the past.


junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 3/12/2010 10:10 PM (GMT -7)   
I will , thank you so much.. this forum is such a wonderful place and I am so thankful to have found it.

tsitodawg
Veteran Member


Date Joined Sep 2006
Total Posts : 845
   Posted 3/13/2010 12:45 AM (GMT -7)   
I am really glad that they were able to get you started on a steroid. Entercort is not a bd one to be on compared to prednisone but still has the same good qualities. I was diagnosed through the pill cam also and had ulceration in about the same areas as what you do. They will probably still run the promethius tests now just to be sure that your diagnosis is strong but it sounds like they have a pretty firm diagnosis. I hope now that they can also give you something to help with your symptoms. The entercort should help with the pain pretty quickly but don't think that if it does not work that your diagnosis is not correct. You have probably noticed that all of us here are different in the which medications are the most effective for us despite us all having the same disease. Entercort was never as effective for me as prednisone. I liked entercort better because the side effects were not as bad and I did not develop the moon face with it but it really did very little for me. It is good that your doctor is going with that medication first because most try prednisone first due to the costs.
I know that it sucks that you have been diagnosed with a chronic disease but atleast now you can start being treated. Do not just to conclusions and think that everything you read here is going to happy to you. The majority of us here are using this support group because our disease is severe and is not in remission. There are a ton of Crohnies that have not gone through even close to what many of us have and are living completely normal lives. If you are able to obtain remission with a long term medication, you may be able to live a life with very few changes of that of your previous life. Stay positive and hope for the best. Continue to educate yourself and be your best advocate. Education will now be one of your strongests tools in your fight and will help you avoid damaging stress and prevent surprises. Try to always remember that this is a very personalized and individualized disease and that you will probably not have every single symptom that you read here. If you do have some of those symptoms though, you can always count on coming here for added advice, comfort, and deep support. Hang in there and realize that the journey is not just starting, you started it when you go sick and have now been through one of the worst stages.

junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 3/13/2010 7:11 AM (GMT -7)   
Thank you Tsitodawg.. its one of the main reasons I am keeping my second opinion appointment.. thank you very much for everything you said.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 3/13/2010 9:22 AM (GMT -7)   
I am sorry to hear you have had to join our club:( But here you will be among folks who understand what you are living with. One biggest tip to you would be is for you to remember that this is a chronic and incurable disease and not treated properly can cause total misery and more. Always take some type of maintainence med at all times and you should consider diet and natural meds as complimentary of your traditional meds. Hugs~
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 3/13/2010 9:28 AM (GMT -7)   
Thank you Nanners... I remember when I was hoping that my water test would come back with a result.. but deep down I just had a feeling that it might be Crohn's. I will remember that. Its funny.. I emailed my family and friends and they are all " thank God its crohn's, thats so easy to have" . I admit I was in shock because I never gathered that from my cousin. I was upset and they were celebrating..I feel like my husband is the only one that understands that this is something that we will have to live with and deal with..

I am overwhelmed with the diet aspect.. not sure where to start....still feeling kinda overwhelmed..

thank you so much..
40 yo...mom to three wonderful kids, and wife to an amazing , supportive husband of 18 years..

Diagnosed with gluten intolerance April 2009

Diagnosed with Crohn's March 2010- just started Entocort

Have had myriad of health problems attributed to many different things over the past ten years. Our family has a history of Crohn's, Ulcerative Colitis and Bowel Cancer.


Grandpato2
Veteran Member


Date Joined Dec 2009
Total Posts : 681
   Posted 3/14/2010 12:22 AM (GMT -7)   
I think your family was relieve you don't have anything terminal and thats why they reacted that way. It's understandable and you'll teach them how 'easy it is to have' lol
Male, 54 years old with Crohn's since 15 years old, diagnosed at age 46. Terminal ileum resected 2002. 5 months of remission. Crohn's has now been active since early 2003. Had a gall bladder removed Nov. of 2009. Currently on Remicade every 8 weeks, Nexium, Iron, B-12 injection every 4 weeks,5-asa Asacol, Morphine Sulfate as needed for pain. Cymbalta for long term pain control. 5-asa Salofalk, Entecort, Imuran and Prednisone in the past.


newfoundsun
Regular Member


Date Joined Nov 2009
Total Posts : 145
   Posted 3/14/2010 8:06 AM (GMT -7)   
In terms of the diet...it is sooooooo individual for each person.  However, one of the best suggestions I had was a friend who told me to start eating Brasco Broth (you can find the recipe online), which is basically homemade chicken soup.  This gave me somewhere to start, and then I just took almost everything out of my diet and slowly have been adding things back in to see what I might have a reaction to.  You can look up CrazyHarry and his posts about the Specific Carbohydrate Diet and The Maker's Diet, if you are curious or want some ideas.  Not saying that either of those are the absolute way to go, but he has some really good write-ups about those diets. 
 
Hang in there!!!
 
BTW:  Wow on the family saying that "Crohn's is so easy to have."  OMG!!!  Give them Crohn's for a week and they'd change their mind in a heartbeat! 
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


junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 3/14/2010 8:15 AM (GMT -7)   
The diet thing is very complex...so many have been helped with so many different things.. gluten free, scd, the makers, low residue...wow.. thank you for the recipe for the broth...looks interesting..but promising...I imagine a food diary would be a good place to start?

as for the family and friends.. I agree they were happy it wasn't terminal but I do not understand how they think its easy... lets give it to them for a week.. that made me laugh..
40 yo...mom to three wonderful kids, and wife to an amazing , supportive husband of 18 years..

Diagnosed with gluten intolerance April 2009

Diagnosed with Crohn's March 2010- just started Entocort

Have had myriad of health problems attributed to many different things over the past ten years. Our family has a history of Crohn's, Ulcerative Colitis and Bowel Cancer.


newfoundsun
Regular Member


Date Joined Nov 2009
Total Posts : 145
   Posted 3/14/2010 8:27 AM (GMT -7)   
I find a food diary has been key for me.  I write down bowel movements, food, and any pain or gas I have each day.  It really helps me track how my body is doing, at least in the outward symptoms. 
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


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 3/14/2010 8:57 AM (GMT -7)   
I live on a low residue diet all the time now and I am currently in remission. This diet is easy to chew and easy to digest and has been a diet that a dietician in the hospital recommended to me when I kept having obstructive type episodes all the time. Now I avoid red meat (that isn't even good for healthy people to eat, it is hard to digest and literally has to rot to digest), and alot of other roughage things. There are a few others on here that find this diet works well for them too.

Others find the SCD or Maker's Diet work well for them. For "ME" personally I find them too restrictive. But they do work for some. I think newfoundsun has a good idea in keeping a food diary to help keep track of foods that bother you. Good luck to all!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Valerie3
Veteran Member


Date Joined Feb 2009
Total Posts : 529
   Posted 3/14/2010 9:07 AM (GMT -7)   
My doctor told me I'm best off with low residue. He also said that sometimes the best diet (especially in young people, he said) is no diet. Honestly, I haven't had to go on a diet yet because I haven't found that any foods bother me, other than popcorn and sometimes lettuce.

tsitodawg
Veteran Member


Date Joined Sep 2006
Total Posts : 845
   Posted 3/16/2010 12:39 PM (GMT -7)   
Honestly, the best Crohn's diet for you is eating the food that YOU can handle. There are so many things that I can eat that other can't and things they can eat that I can't. I was really focused on finding a specific diet when I first got sick but my G.I. put it best when he told me to relax and find what works for me. He explained that this disease is going to make it tough to eat so many things and that a diet is just limiting it to even less. Just like with many disease or people trying to lose weight, there are a ton of books on cure all diets and sure shot diets that are perfect for everyone with this disease. Anytime you see something claiming this, that should be a huge red flag that it is a scam. There are several effective diets that even people without a disease should follow but they will not work for everyone with this disease. Remember that it takes a combination of diet, exercise, and modern medication to combat this disease. I know that I have said it before but there are too many people that start a diet and start feeling so good that they think that they do not need medication. Without fail, all of these people end up in the hospital in surgery or near death due to the fact that damage is still being done. Of course they are feeling good at first because everyone feels better when they eat right but the damage is still taking place. If you do start a diet and keep on medication you will be maximizing your remission potential. Good luck and you will find by trial and error what works best for you. My good and bad foods are constantly changing and your will too. There are obvious foods that will pop out at you but the rest you can try them and if you get sick don't eat it.

junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 3/16/2010 12:46 PM (GMT -7)   
wow.. thank you. you are right..
40 yo...mom to three wonderful kids, and wife to an amazing , supportive husband of 18 years..

Diagnosed with gluten intolerance April 2009

Diagnosed with Crohn's March 2010- just started Entocort

Have had myriad of health problems attributed to many different things over the past ten years. Our family has a history of Crohn's, Ulcerative Colitis and Bowel Cancer.


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 3/16/2010 1:16 PM (GMT -7)   
I am like Nanners, I keep to a low residue diet for the most part. I do cheat once in a while and I pay for it, but sometimes it is just worth it. turn I think keeping a food journal is a great idea so that you know what works for you and what doesn't, but keep in mind that it may change over time. So if a food bothers you now, you might want to try it again in a few months or next year to see how you do later. That is the weird thing about this disease, things keep changing, just to make things more fun!

I know you are probably feeling overwhelmed with everything, but I have found a great resource on just plain basic diet info is "Cooking Well for the Unwell" by Eileen Behan. She is a dietitian and she has section in her book explaining all the different types of diets that sick people might get put on and the reasoning behind them. Clear liquids, Full liquids, Extra calories, Low residue, Soft diets, Low salt, ..... She then has recipes for each section. It is just a good reference for anyone trying to understand the needs of a sick body and how to feed it properly. I actually have 2 copies because I was always loaning it out to friends who had sick loved ones. It is out of print, but used copies are sold on Amazon for about $4. When I get into a rut during a flare and end up eating the same foods over and over, this is the book I go to for ideas of what to eat.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 3/16/2010 1:44 PM (GMT -7)   
thank you Suzanne...it is very overwhelming but i agree with the food diary..thank you so much!
40 yo...mom to three wonderful kids, and wife to an amazing , supportive husband of 18 years..

Diagnosed with gluten intolerance April 2009

Diagnosed with Crohn's March 2010- just started Entocort

Have had myriad of health problems attributed to many different things over the past ten years. Our family has a history of Crohn's, Ulcerative Colitis and Bowel Cancer.


gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4095
   Posted 3/16/2010 3:37 PM (GMT -7)   
It is really hard when you get the diagnosis, but I think you need a good GI working with you. You don't ALWAYS get worse...I am disgusted that the resident told you that. You may get on a regimen of medicine and diet that works for you and go into remission for many years. Having the diagnosis is good in the sense that you now can get treated for it. My first reaction was to be relieved because I was worried that I had cancer, and it wasn't until about a month later that I started grieving the loss associated with having a chronic illness. Educate yourself and that will help. This forum, and ccfa.org website will give you tons of useful information. Good luck with everything, and hang out here with us...we'll get you through the tough stuff. Hugs to you!
51 yr. old female, diagnosed with Crohn's in small intestine and terminal ileum Sept-Oct. 2007. Also have IBS, and had Salmonella Dec. '07
currently taking Pentasa- 4 500mg pills per day, Metamucil and colace for constipation, probiotics


junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 3/16/2010 3:43 PM (GMT -7)   
gumby... thank you...i am hoping that my other appointment may lead to a better doctor... this group , well just been a little difficult to deal with them. i will continue to hang here.. you guys are great.
40 yo...mom to three wonderful kids, and wife to an amazing , supportive husband of 18 years..

Diagnosed with gluten intolerance April 2009

Diagnosed with Crohn's March 2010- just started Entocort

Have had myriad of health problems attributed to many different things over the past ten years. Our family has a history of Crohn's, Ulcerative Colitis and Bowel Cancer.

New Topic Post Reply Printable Version
Forum Information
Currently it is Saturday, December 03, 2016 5:06 PM (GMT -7)
There are a total of 2,732,302 posts in 301,007 threads.
View Active Threads


Who's Online
This forum has 151169 registered members. Please welcome our newest member, Zags.
289 Guest(s), 9 Registered Member(s) are currently online.  Details
super20dan, Girlie, getting by, Todd1963, RanMan, DennisinNY, Duffykani, Mustard Seed, SueCAll


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer