Newly diagnosed but ......

newly diagnosed but ......

Hi. I am a 42 year old mom of 4. Last March I started with a lot of stomach pain. I have a very large hernia, due to my previous 4 c-sections. The hernia is on the left side of my stomach parallel to my umbilical area. In March 2011 the pain started to be horrendous. All around the hernia area. I saw 2 surgeons who instructed me to lose weight. By July the pain was worse, and the diarrhea with yellow mucus started in abundance. Some times 20 X per day. Back to the hernia surgeon I went. They finally ordered a CT scan. CT showed 30 cms of highly suspicious mirrial(sp?) Wall thickening.in the terminal ilium. It also showed a large hernia. The 30 cms of thickening are in the hernia sack. Next in August I had a colonscopy.

The colonscopy showed duodentis in stomach area. The large bowel was all clear. The small intestine was unable to be scoped it was so closed over. The GI dr said the ilium valve was like a pen nib. The dr started me on 30mg of pred. That was aug 1. The pred has seemed to work. It def helped with the pain and improved diarrhea. The BMS are still very loose and sometimes water. Just not as frequent. Returned to dr oct 6. At that time they drew blood for an enzyme test to se if I'm fine to take Imuran. They want me to take 150mgs. I am tapering off pred and am at 12.5 mgs from 30mg. The pred has given me awful side effects. Muscle weaakness, insomnia, jitters etc. I am still waiting to hear Monday if I am fine for Imuran.

The thing that I don't understand is- how do they know for sure that I actually have Crohns when they can't even enter small intestine to biopsy. It just seems odd to me- 1) I am 42yrs old? Isn't that old to be first diagnosed 2) not a single person anywhere in my fam has this 3)my blood work is perfect. Not a thing of kilter 4) that all 30 cms of the thickened part just happens to be crammed into a hernia hole? I can't help but feel I could be misdiagnosed. All the paperwork from the GI to my fam dr refers to me as newly diagnosed with Crohns. I am also having a huge fear of taking this IMuran. Everything I have read has scared me to death. The pharmacist gave me literature that talks about lymphoma risk associated etc. I started eating glutin free 2 weeks ago and it seems to have made a difference. Is it possible for people with Crohns to taper off Pred and not need Imuran, but can just be fine? What do you guys think? I would appreciate your opinions. I hate to start meds if this isn't even Crohns? Thanks so much. Sorry so long

Hello and welcome to the forum..first of all..
I am 47 and also recently been diagnosed as well...a complete surprise. it can affect anyone at any age, as we now both know.. If you read some of the threads here..you will see that many people can be waiting years to get diagnosed accurately..

I was on Pred also and had great results getting inflammation under control. It did keep me awake but I was used to been up most nights in the bathroom!!!
Imuron was 50mg going up to 75mg after the Pred stopped...but it caused my liver function results to sky rocket...so was taken off it.
That said...everybody is different on these meds...Your symptoms seem to be strong indicators of CD...but again more tests may be needed..
It is a lot to take in at first and can take a while for it to sink in..
Do take care for now..:tongue:

Hello and a big welcome to the forum
Another mature Crohnie here - diagnosed at the beginning of this year at the age of 51. It's actually not uncommon to be diagnosed at our age. Like you, I have no family history ( though there are a lot of other autoimmune problems with siblings etc ) so it was a shock.
Took me 8 months to get a Crohn's diagnosis.
I think they have probably put all the evidence from the different tests together to get your diagnosis. The fact that you are responding to the Pred is one indicator of Crohn's. Many people here have found that their doctors will not prescribe Crohn's medications unless they are very sure that that's what it is.
After you've weaned off the Pred, it's normal to be on some sort of maintenance med like Pentasa or Imuran - what they put you on depends how severe the remaining inflammation is. I try to to stick to the SCD diet ( which is also gluten free ) and that helped a lot with my symptoms, but wasn't reducing the inflammation.
So many of the Crohn's treatments sound scary, but the implications of leaving Crohn's untreated are pretty scary too. Many people have been on Imuran with no ill effects - I'm a relative newbie, but so far so good re: the side effects.
Like Del says, it's such a lot to get your head round and a big learning curve. But we're here to help where we can. Keep your chin up and take care x

Hello and welcome blessedwithfour. I want to try and ease your fears re: the Imurin. I have been on it for almost 10 years w/ zero side effects. I dont know if you have Crohns or not, but I understand why you are questioning your dx. Your hernia definitely muddies the water as far as understanding your dx
Back to the Imuran, I agree w/ you. Taking it if you dont really have Crohns is opening you to things one tries to avoid. The people that posted above me gave you a bunch of good info on other meds for crohns. I think asacal is pretty benign. No real side effects w/ that one. Usually docs start w/ the less dangerous meds first. Imurin is given if meds like asacol or pentasa don't work or you have a reaction to them and cant take them.

Welcome to the Forum!

I agree with Grumbletum. Meds alone do not put you in remission. The SCD has helped me tremendously after finding it in the early 90's.

Hello, BlessedWithFour. I am blessed with 5! Welcome to our family. I'm sorry that you had to join us, but glad that you did.

I agree that it sounds like Crohn's. Hopefully, though, you are right. That would be wonderful. But, hey, if you do have CD, we're all here for you. :hug:

Please keep us posted if anything changes.

bjeffrey said:

Welcome to the Forum!

I agree with Grumbletum. Meds alone do not put you in remission. The SCD has helped me tremendously after finding it in the early 90's.

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Actually, I was trying to say for me the diet alone wasn't significantly reducing my inflammation - I started the diet pre- diagnosis and meds.
But I'm really glad it's working for you and many others. However, a lot of people have in fact achieved remission with meds.