What they don"t tell about crohn's !!!

[choko]

Hi i am 39 year's old, i have been happily married for 13 year's and have three beautiful children. I would say i have had crohn's for many years even thow i was only dxd 7 month's ago. I have had a course of steriod's and was on sulfasalazine for 7 month's. I had another colon; a few weeks ago and they think i am in remission, so i was told to stop taking the sulf, my bowel seem's to be going ok at the moment it flares up if i am stressing but i am learning to control them flares the worst of it at the moment seems to be the joint aching i am on some strong pain reliever's for not only that but a debilitating back problem i have also had for years. I put my self on a few day's dose of steriod's, but have started to taper now. The only problem there is that i also have osteoperosis,[ which you may notice most crohn's suff also have]. There is so much that goes with a auto-amune diseases that no one told me, when i was dxd. It was my sister who did tell me she has SLE,[ which is another auto-amune disease]. I am waiting on a referral for a rhumetolgist who hopefully will be able to shed some light on it all for me, well that's all for now hopefully i have not borred you to much and sorry for all the spelling and grammer mistakes,.:smile:

 

[dizzyd]

Hi ya, welcome to the board.

 

[Isla]

Welcome and yes the diagnosis can be overwhelming as a lot goes with having Crohns.

 

[milesrlv]

Welcome, there are so many things related to crohns, I couldnt count. Never mind side effects from the drugs, everytime I had something wrong, it was always linked to crohns. Read some books, they do help, and your GI should provide one or two. Good luck.

Welcome and I agree wholeheartedly with Pen. Find some books and inform yourself because to be honest I think most Crohn's patients know more about the disease than a lot of doctors. This is probably because we have a vested interest, whereas the doctor does not.

 

[Keara07]

Hi - welcome to the forum! Yes, agreed it is tough, and for me, the *joints* are the worse as it has slowed me down as an almost 37 yr old mom of four kids under 9 and dx'd 7 months ago myself. I have gathered oodles of info and ordered many books to read which helped me sort some stuff out - before and after an emerg resection I faced in March. I hope you feel better soon!

 

[FruitLoop]

When I was diagnosed I was sort of given the impression that it was a bit like a tummy bug and with some nice shiny red steroids I would be good as new.

When i flared when my daughter was 3 months old they told me they had expected it as 3 months post birth is a big trigger for flaring - WHY did no-one tell me ?

My dr's have never ever told me any of the "xtras" for Crohn's - all my knowledge is from my own research.

When I had my re-section the woman in the next bed had Crohn's and she was telling me all about the many, many "extras" she had due to Croh'ns - kidney, liver, major problems.

I was in floods of tears and discharged myself as I could not cope with all the negative information - it was like having the grim reaper in the nex bed.

 

[Guest]

hi Choko - welcome to the forum is Choko short for chocoholic? lol

i also agree - doctors seem to want to volunteer only the bare minimum, unless pressed by the patient for more info. the trouble is, when we're first diagnosed, we don't even know what questions to ask!

i have learned so much more from people actually living with Crohns, than i ever have from a doctor. similarly, when my child was diagnosed with something - it was the parent support group where learned the true picture.. also, it took me to develop pernicious anaemia a long time after surgery, before i was told i should have been having regular B12 injections....

information is the key - we learn from other people's experiences, and we also learn from them what we need to discuss with our doctors.

 

[soupdragon69]

Hi Choko,

Welcome to the forum! Good to see you here.

Yep many of us have other problems on top of Crohns. I was told by a rheumatologist a few weeks back I have massive autoimmune problems because I have at least 3 diagnosed autoimmune issues and possibly a 4th on the way.

When I told someone recently they just said "yet another thing? cant you stop adding to the list?" erm hello do I really want any of it? anyone seen any adverts for "here have an ailment"? ;-)

Feel a bit like an onion and just peeling back the layers. Eyes still smart at times as a result lol

Anyway, welcome again. Keep posting!

 

[choko]

thanks for all the feedback, I am yet to see a rheumatologist. I have just started seeing a pain management doc who by chance has a auto amune disease her self, i had one visit with her and she was going to get me in to see a rheumy but she is having a bad flair and has to take time of so it will be 2 month's before i see her again so yet again i have to wait, even though i know it is not her fault. At the moment i get more help from my sister who has SLE (Lupus). Sorry i must sound like a winging old cow (LOL).

 

[choko]

Help!!!

About eight week's ago i noticed my hair was thining out, ( without needing a haircut,) so i decided to take more notice. When i wash my hair i allway's run my finger's thru it when the conditioner is in it, each time i washed it handful's came out,. I know there is a time of year that you malt and i did think that's all that was happening but i normally have very thick long hair and at the moment the back is thin.!!!!

 

[choko]

Thank's pen that does help and i am sort of glad that it is normal when you are on pred. I am at the end of tappering now so we'll see what happen's then !!!!. Talk soon.

 

[Keara07]

Def a prednisone side effect, and I am told it can last 6-12 months after tapering off, depending on the original dosage and length of time. Mine is still coming out and I am off Pred since June 8th.

 

[Promise77]

I lose lots of hair too...my dr said that it is because I am always low on iron. The only way I have managed to keep my iron levels anywhere near "normal" (whatever that really is) is to have iron shots two times per week. They are quite painful and leave a nasty bruise looking stain on your behind but the energy I felt while having them was amazing...and my hair grew long and thick while I was on them. Now my insurance company wont cover them and I cant afford them. =(