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Posted Today 10:36 AM (GMT 0)
Hello!

It has been a while since I wrote about my problems here.

Things change just in: still under weight severe for my height. In past three weeks I have more loose and
soft stool, no matter what I eat. Avoid gluten, minimize diary. Soft vegetables, fish, white meat, some
rice, Nutricomp 500 kcl twice a day, tea, water, natural supplements.

FINALLY!!!

I have found really great doctor, a woman, that is willing to listen to me! Some rocks move from
my heart, literally!

Yesterday I have wrote to her, explain all, today send her all my results. She said to me:

I THINK YOU HAVE CHRONIC INFLAMMATION OF SMALL INTESTINE.

She asked me to get some more tests done, and go on Salofalk 500x2 daily + Ranital 150 for 3 months
as a test.

I am waiting for more answers from her. And then we will see.

Things are hard to me, since I now live in some mid-light, some where between real and another
more cruel world which is about to come. Having problems with my girlfriend, almost brooked
with her, my health, ... Today I have crushed down and cried, despite beeing a man. I am not
ashame to admit. Future is ... there is no future. Or?

Will keep you posted, if anyone will read.

Thank you!
Best!

YP9

Post Edited (YP9) : 11/29/2011 3:40:39 AM (GMT-7)

Posted Today 12:52 PM (GMT 0)
Finding a good doctor is a huge step in the right direction! Were you on any treatment before the Salofalk? If you start on the right treatment you will most likely feel much better in your body and your mind very soon. If it turns out that you have Crohn's you absolutely have a future to look forward to, crohn's can go into periods of remission sometimes for years, and there are many treatments to try. A lot has been learned about IBD in the last few years and a young person like yourself can hold onto the hope for a cure in your lifetime for sure! I wish you luck in finding out the source of your problems soon. (When I was dx, (also inflammation in the sb), I asked for entocort and that helped within a month.)

I'm sorry that you have to deal with relationship issues at the same time you are not feeling well. Remember that time heals this kind of pain, and there are lots of fish in the sea. :)
Posted Today 2:09 PM (GMT 0)
Yp9,

I got the answers to the questions I asked you in another post. 

It sounds like you have found the right doctor for you!  I once gave a rheumatologist an outline of my entire medical history, went through it with him, and he told me I was on a "search" (I was) and there was no "big picture" (I knew he was wrong)  However, other doctors have told me that the diary I bring with me to visits is incredibly helpful to them (can you imagine trying to figure out a person's problem in 15 minutes?)  The other day I was in at the new gi docs office. NO records had been sent to them (I asked when the appt and referral was made and they told me they would take care of that which they later denied saying)  Then I walk in, tell them I'd like to continue being treated for crohns even though I have no evidence of it to show.  But I had my binder full of medical records with me (always take it to any provider's office, sometimes its not needed) and was able to pull out copies of all my previous procedures, they made copies and thanked me, said hardly anyone ever has that type of info with them.

WIth a little encouragment like this I now plan to expand my medical records binder LOL.   Not only reports from the past few years, but a few from many years ago to show comparisons. I'm even going to include pictures of then and now to show I have improved by gaining 25-30 lbs.  I will also include the notes I have made over the years (many times tempted to toss them since they seemed nonproductive before treatment)  I re-read them recently and noticed that I have forgotten some details.  

Best of luck and keep posting! 

Posted Today 7:17 PM (GMT 0)

big betty said...
Finding a good doctor is a huge step in the right direction! Were you on any treatment before the Salofalk? If you start on the right treatment you will most likely feel much better in your body and your mind very soon. If it turns out that you have Crohn's you absolutely have a future to look forward to, crohn's can go into periods of remission sometimes for years, and there are many treatments to try. A lot has been learned about IBD in the last few years and a young person like yourself can hold onto the hope for a cure in your lifetime for sure! I wish you luck in finding out the source of your problems soon. (When I was dx, (also inflammation in the sb), I asked for entocort and that helped within a month.)

I'm sorry that you have to deal with relationship issues at the same time you are not feeling well. Remember that time heals this kind of pain, and there are lots of fish in the sea. :)

Hello, Big Betty!

First I would like to thank you and said I am deeply thankful for your words of wisdom and encouragement! Thank you very much!

I was on no treatment. Just Salofalk one month. At that time I had no problems, just constipation,
weight loose, some noise in SB and around TI. Had two attacks of spasms in aug and sept. 2010. Than till now,
thank God! nothing. No attack. Just weight loose, some fever, some bulbs on skin like 'Erytrema Nodosum'.
little muscle pain, till I did not start vits. Now, I feel OK, expect previous problems.

I hope, Betty that we have future to look forward to. You are right in point - if we spoil it now, it can turn
to be better or worse when it comes to. We can not predict future. I know. Well, I hope for some better
cure. I am 36 years old.

Can you please tell me how your CD progresses, since it started much same as mine? I have read
a lot of terrific stories, so I won't be scared too much. I hope.

Thank you for your wishes! It will be hard! And I know that relations are so, so and fishes and that.
But I chinked that I found my soul mate in this girl I still have. It is very hard!

So, please if you can, tell me your story. How? When? How long you have CD, ... all you can.
Food you eat? How did it started?

Thank you again for your beautiful encouragement!

Best!

YP9
Posted Today 7:35 PM (GMT 0)

rootsmith said...
Yp9,


I got the answers to the questions I asked you in another post.



It sounds like you have found the right doctor for you! I once gave a rheumatologist an outline of my entire medical history, went through it with him, and he told me I was on a "search" (I was) and there was no "big picture" (I knew he was wrong) However, other doctors have told me that the diary I bring with me to visits is incredibly helpful to them (can you imagine trying to figure out a person's problem in 15 minutes?) The other day I was in at the new gi docs office. NO records had been sent to them (I asked when the appt and referral was made and they told me they would take care of that which they later denied saying) Then I walk in, tell them I'd like to continue being treated for crohns even though I have no evidence of it to show. But I had my binder full of medical records with me (always take it to any provider's office, sometimes its not needed) and was able to pull out copies of all my previous procedures, they made copies and thanked me, said hardly anyone ever has that type of info with them.



WIth a little encouragment like this I now plan to expand my medical records binder LOL. Not only reports from the past few years, but a few from many years ago to show comparisons. I'm even going to include pictures of then and now to show I have improved by gaining 25-30 lbs. I will also include the notes I have made over the years (many times tempted to toss them since they seemed nonproductive before treatment) I re-read them recently and noticed that I have forgotten some details.



Best of luck and keep posting!


Hello rootsmith!

I am sorry that I did not write that. Thank you for your answer!

I understand you, yes. But those docs were great, that they save your problems. In 15 min? No, can not imagine. I saw much
similarities with your case and mine. And it is hard when nothing shows. I think that It would be greater achievement some
good tests in future - maybe same as good new medicine or more. I am like you. I have all of my tests at home and
send them where needed.

This is good decision you have made about your records and your case. I hope docs will get something in our cases and help
us. Half way is that something is found. I total understand you.

Thank you for your post and wishes!

I also wish you best or better year and hear from you!

Best!

YP9
Posted Today 9:42 PM (GMT 0)
Hi YP9.
I don't have much to add, but I am so happy that you found a doctor to work with you! I am sorry you are having troubles with your girlfriend. It is so hard to work on a relationship when you are feeling chronically ill. Maybe you need to just focus on yourself for awhile if she is breaking up with you. I have been married for 28 years and my husband has the patience of a saint, but trust me, I drive him crazy sometimes! Take good care of yourself and try to be patient with your medical quest. Sometimes it takes a long time to find what works, but hopefully with a good doctor you will get there.
Posted 11/30/2011 7:56 AM (GMT 0)

gumby44 said...
Hi YP9.
I don't have much to add, but I am so happy that you found a doctor to work with you! I am sorry you are having troubles with your girlfriend. It is so hard to work on a relationship when you are feeling chronically ill. Maybe you need to just focus on yourself for awhile if she is breaking up with you. I have been married for 28 years and my husband has the patience of a saint, but trust me, I drive him crazy sometimes! Take good care of yourself and try to be patient with your medical quest. Sometimes it takes a long time to find what works, but hopefully with a good doctor you will get there.

Hello Gumby44!

Nice to hear a words from you! :)

I hope you feel little better, than previously when we read. Thank you for your kind words of support.

I am glad that I found that doctor and hoping things will improve. For now my biggest concern
is not being treated and having inflammation in me. And as you said work on both sides;
relationship and health can be difficult. And sometimes man has to crushed down or you carry
to much troubles in your self. This is bad, I guess. It is so stressful.

Gumby44 you are lucky to have such a noble and fine husband. Relations broke for
much smaller things and problems than this darn DD is. You are lucky!
Respect that man as a God! :) Truly!

Hope things will get some solution in my relationship. I really love this girl and have found a soul mate
in her.

My dream is to have such woman beside me. Being alone and ill - can not imagine and hope that is
not my future.

Thank you again Gumby44 for your respond!

Best!

YP9

Post Edited (YP9) : 11/30/2011 12:59:13 AM (GMT-7)

Posted 11/30/2011 8:17 AM (GMT 0)
So happy to hear you found a GOOD doctor! They can be hard to come by. I'm just beginning my search for a new one. I really hope this doctor works wonders for you, and you can enjoy a LONG healthy remission!
Posted 11/30/2011 8:22 AM (GMT 0)

Jen77 said...
So happy to hear you found a GOOD doctor! They can be hard to come by. I'm just beginning my search for a new one. I really hope this doctor works wonders for you, and you can enjoy a LONG healthy remission!

Hello Jen77!

Thank you for your kind words!

I hope that this will work out as you said. :) I also wish you all the same. Good and understanding
doctor and more health, if you are in troubles now.

Thank you again Jen77!

Best!

YP9
Posted 11/30/2011 1:23 PM (GMT 0)
I thought I had severe IBS and went to my dr who found a hard mass in my middle. I had a ct scan and then a colonoscopy which revealed moderate inflammation, ulcers and the beginning of an abscess. My mom has crohns and has had many surgeries and almost died when her intestines ruptured, (this was before they had so many effective treatments for us). My problems did not seem so serious, so I thought I could not have crohns.

My first GI dr wanted to give me pred, but by then I had looked into what drugs were available and asked for entocort instead, as it has fewer side effects and works in the last part of the small intestine where my inflammation was. I've used it a couple of times when I've had a flare and then tapered back off with no problem. I've been on LDN for a few months and feel pretty good right now. If it quits working there are more drugs to try, but LDN is nice because the side effects are very few and mild, and it is inexpensive.

My new GI, who I like very much, gave me the Prometheus test which helps diagnose crohn's. He said it showed that I had crohn's and intestinal permeability, which explains why I can't eat a lot of different foods, like eggs, yeast, etc. I can eat rice, some meats, veggies and even nuts at this point. I miss bread a lot, and dairy, but it is only food.

Thanks for asking about my experience w/ crohns, and I wish you the best and good health!
Posted 11/30/2011 2:59 PM (GMT 0)

big betty said...
I thought I had severe IBS and went to my dr who found a hard mass in my middle. I had a ct scan and then a colonoscopy which revealed moderate inflammation, ulcers and the beginning of an abscess. My mom has crohns and has had many surgeries and almost died when her intestines ruptured, (this was before they had so many effective treatments for us). My problems did not seem so serious, so I thought I could not have crohns.

My first GI dr wanted to give me pred, but by then I had looked into what drugs were available and asked for entocort instead, as it has fewer side effects and works in the last part of the small intestine where my inflammation was. I've used it a couple of times when I've had a flare and then tapered back off with no problem. I've been on LDN for a few months and feel pretty good right now. If it quits working there are more drugs to try, but LDN is nice because the side effects are very few and mild, and it is inexpensive.

My new GI, who I like very much, gave me the Prometheus test which helps diagnose crohn's. He said it showed that I had crohn's and intestinal permeability, which explains why I can't eat a lot of different foods, like eggs, yeast, etc. I can eat rice, some meats, veggies and even nuts at this point. I miss bread a lot, and dairy, but it is only food.

Thanks for asking about my experience w/ crohns, and I wish you the best and good health!

Hello!


Thank you again for your comment and your story. I have heard for entrocort , and I also have inflamation
on same site as you. End of TI. Here in Europe you get Budenofalk - also steroid with less side efects than
Pred.

We have same problems, I guess. How do you deal with them? With your CD? In job? Any remission? How long usualy?
I know we are all different, but ask any way. I hope I am not being to annoying. :)

Thank you again!

I too wish you best of health in your situation!

Best!

YP9
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