My story.

[clearwell]

my story.

Hi everyone,I have just joined the group and would like to tell you a bit about
me.I was diagnosed with crohns in August 2008 after like most other people
suffering and finding excuses for it.I eventually went to the Doc due to pain
bleeding and being in the toilet up to twenty times a day.It was a dreadful
time and I felt so weak and ill.Then came the examinations at hospital,the
colonoscopies etc etc which resulted in having to have a bowel resection
and I think about 6cm of bowel removed.That was in March 2009 and I was so ill.In October 2009 I had another op to remove my gall bladder and I
thought after going through all that I would be ok,what a foolish thought.To
date I am still having flare ups more often than not I have just had one
where the pain was so bad in my knees I could barely walk.I do try to ignore it all but at times it wont let me.The only medication I am on is codeine
phosphate,loperamide which I can take up to eight of each a day and it
still dose'nt stop the diarrhoea and colestyramine 3 daily which again when
it flares up does nothing.I have an appointment at the hospital on Friday
which I am hoping will help.I also have a blood problem called mgus which
I have looked up and the symptoms are very similar but I am at two
different hospitals and have asked both Doctors if it's connected and they
have said no but the research I have done says different.Does anyone else
have this problem with mgus too.So sorry this is so long but its good to get
it off your chest

 

[Bloom]

Hi Clearweell,

Ive been diagnosed this month with crohns just waiting on more tests to see if i need an opperation. I have problems with my blood i think its to do with the blood cells im not too sure if thats what u have or not? It is great to be able to talk about crohns with people who can help and give tips so far everybody has been so nice. I too am back in the hos this thursday for more tests so keep us informed hope your feeling a little bit better x

 

[clearwell]

reply

Hi Bloom,the blood problem I have is my body makes to many white cells
which are killing off my red cells.I have had one bone marrow test and it
looks like I will be having another one.I have spent a lot of time looking
into it and it causes the same symptoms as crohns although I did have
ulcers and a blockage in the bowel hence the op.Yes it is good to be able
to talk to other people who are going through the same thing and there are
so many.Good luck with your hospital appointment hope it all goes well.I
feel a bit better at the moment so am going to try and eat something so
fingers crossed.

 

[DustyKat]

Hi clearwell and :welcome:

Good to see you here. It sure sounds like you need something to bring your flare under control (Prednisone?) so I hope they get it sorted for you when you go to the hospital on Friday, in fact insist on something being done before you leave!

Have they ever discussed maintenance medication to you? What about supplements like B12 and Folic Acid?

I don't know much about MGUS but since it is also linked, in some people, with Rheumatoid Arthritis, another autoimmune disease, I don't see why there couldn't be a connection to Crohns.

Please stick around and keep us posted on how you go at the hospital. Good luck and welcome aboard!

Take care,
Dusty

 

[Dexky]

Welcome Clearwell!! I don't know if your blood issue is connected but increased white cells are indicative of over-active immune systems so I would think one of the immuno suppressor meds might work for you. Hopefully, you will get the help you need at your appt. on Friday. Let us know how it goes...good luck!!!

 

[clearwell]

Hi clearwell and :welcome:

Good to see you here. It sure sounds like you need something to bring your flare under control (Prednisone?) so I hope they get it sorted for you when you go to the hospital on Friday, in fact insist on something being done before you leave!

Have they ever discussed maintenance medication to you? What about supplements like B12 and Folic Acid?

I don't know much about MGUS but since it is also linked, in some people, with Rheumatoid Arthritis, another autoimmune disease, I don't see why there couldn't be a connection to Crohns.

Please stick around and keep us posted on how you go at the hospital. Good luck and welcome aboard!

Take care,
Dusty

Hi Dusty,
thank you so much for your advice and I welcome it all cause I
am not getting much from the medical field at the moment.The doc at last
hospital did suggest B12 injections did the blood tests and I heard nothing
more I spoke to his secretary who said she would deal with it still heard
nothing so my GP receptionist spoke to her and she was as rude to her as
she was to me and apparently I don't need them.

I have a bad morning again and this is happening more often than not was in the loo 7 times in 2 hours not good.I have'nt eaten properly for over a week
so weight is coming off.Having said all that at least when I go to hospital
I will have a list of questions and medication I want to try.Will let you know
how it goes.

 

[Bloom]

Hi Clearwell,

I have the same problem with eating and am loosing alot of weight ive gone from over nine stone ( which wasnt very big to begin with ) to under 7 stone. The doctor prescribed a food drink called Ensure Plus you can get them in a few different flavours the one i drink is strawberry. Most times its the only food i can keep down so if ur getting worried about your health due to weight loss i would advise that you ask your doctor about these drinks. There is a few diff brands but the Ensure Plus is the best ( i think ). Regards the B12 injections i get three a week plus i take Iron tablets and i find that they help me. When you loose so much weight the little food you do eat you loose all the good from the food so you might wanna ask about B12 and other multivitamins. My white blood cells are the same every time i get bloods done there way up i thaught that was due to an infection? Is there any other questions you would like me to ask while im in the hospital tomorrow? If you have just let me know i will be happy to add them to my list of questions. Hope you feel better soon x

 

[Bloom]

Or if anybody else has some questions just let me no i will ask and update you tomorrow x

 

[DustyKat]

Hey clearwell,

Definitely follow up your B12. Along with the regular blood tests ask them to test for B12, Folate and Iron Stores. Good luck!

Dusty.