My story

Hello all. So since the last post I have had a lower bowel series done. The notes from the radiologist read "Of the normal ileal mucosal pattern and signs of mucosal or submucosala 10 cm segment of evident nodular mucosal or wall thickening." The impression read ''abnormality of the terminal ileum with edema. Clinical correlation for infectious or inflammatory terminal ileitis recommended.''

Now I don't know about you but I about died! That to me was a death sentence. I then had a colonoscopy done and found in the second portion of the duodenum and the ileocecal valve/terminal ileum there was acute and chonic inflammation.

Now that really scared me but, as I keep reading these byopsy results it states '' No grabulomas are identified in any of the specimens to specifically diagnose Crohn's disease, however, the inflamtion could represent involvment by crohns disease. No spiral shaped bactiera charicteristic of Helicobacter speices are identified in the duodenal or gastric biopsies on immunostain. Epithelial dysplasia or malignancy is not seen.

Now that being said, what would you think about everything? I am not sure if I’m in denial or I’m just scared that they are going to diagnose me with something I don't have. I went to the ER last week because I had a bad belly ache and weird look poo. I just wanted to make sure that I wasn't dying because I really didn’t know what to expect.
The ER doc admits me in the hospital thinking he seen lesions on my liver in a CT scan. I get a ultra sound the next day and everything is fine. I just have inflammation in the ileum and I end up staying there for 8 days!! Mind you this whole time they have me on a liquid diet!! They don't understand why my stomach is hurting so bad, they were pumping me with so many steroids my belly couldn’t handle it. I also was taking pain meds and anti-nauseous meds.
I am a mother of four beautiful kids and I’m scared… one of my kids he is my step son and 3 years ago in March he lost his mother to this disease. I don’t know to this day why this has happened or the reason, but I feel in my heart it was for a reason and I hope that reason is to help everyone that struggles with this disease everyday of their lives.

Thank you so much for listening to me vent. 

Love always
Jenny

Hi jenny and welcome to the forum. I was pleased to meet you in the chat room tonight.

First off, having crohns is not getting a "Death sentance". People that treat there crohns have a very good chance of living a normal life. If the crohns is left untreated it can be far worse off than treating it.

I was like you, having very little symptoms, mostly I had "D" for years.

When you first find out that you have crohns it is normal to freak out. But you will pass that part of it and things will get better. One thing that is a must with crohns, keep your head up and know that things will get better. With a possative mind set you will feel better and can understand what is going on better.

Try to learn as much as you can about crohns, BUT, make sure you take time to enjoy life as you always have. This will get easyer as time goes on. We need to take time off from learing about crohns sometimes. Turn it off as you would say. It can be overwelming sometimes and it's ok to just take a break fom it all.

I know when I first found out I felt like I couldn't do anything, or even do the things I like to do. But after a while, and with the help of the people in this forum, I have found a way to live my life better and things have gotten much better.

Don't let the meds for crohns scare you. It's far better to treat the crohns with the meds than let it go and end up needing surgery. I didn't treat mine for years and ended up having 3 surgerys in less than one year. But now I'm taking Imuran and I'm starting to get better after 3 1/2 months of Imuran.

jenny, please try to keep your head up, it will be better in the long run and remember, you don't have to live with the symptoms of crohns, you can find remission.

Keep coming back to the chat room and we will support you the best we can. :hug:

Hope to see you soon.

Jim
(Pops)

I can just confirm what Jim is saying. Don't be scared of drugs. Don't be scared about managing your Crohn's long term. Once you accept that you got it (I know, it takes a while to really accept it - for me it took 4 years at least), and you understand that it's just another chronic disease that needs to be managed (just as for instance diabetics have to manage their blood sugar) you'll end up getting things, your symptoms etc. in order again.

As to the specific diagnosis, that is what IBD you really have, yes, it's important, but on the other hand a label doesn't matter, what matters is where the inflammation is. Having said that, I personally would rather take Crohn's as the default diagnosis in your situation and start to manage it with the standard treatment (short-term prednisone or budesonid - you are saying you had problems with steroids, so trying different ones might work - to get the inflammation down and long-term aza or 6mp at first and/or a combination of biologics), inform myself about diet, sport, vitamin therapy etc. At best you have Crohn's (likely from your description of the findings) and you get it under control and go without sympthoms, at worst you don't have Crohn's but another IBD, but you still fought the inflammation with the right measures.

I hope you get better soon, Jenny. As to dying from Crohn's (you say your step son's mother died from it) is extremely rare when the disease is managed. As a matter of fact, some studies even show Crohn's patients who manage their disease have a higher life expectancy.

So I would suggest small steps. First, to find a good GI who is really specialized on Crohn's and can start long-term management of it, can try different steroids, so you won't experience the problems you had in the hospital. And he could also help you with diet and other ways to relief symptoms and get you into remission.

All the best to you,
A

Hi there,

It' a scary thing finding out you have crohns and then all the testing and medicating that comes with it can be very overwhelming. I'm also new to this life and agree with the other posts about learning to accept crohns (which will take time) and it's normal to freak out (I still am :lol. It is like learning to live with diabetes cos I have Type 1 and I did learn, my children were 5 & 3 when I was diagnosed with it, I looked at them and thought to myself if I don't look after 'me' then who will look after 'them'?

It's a good idea to learn what you can as Jim (pops) suggested, it's like another language which I think I'm beginning to digest, but then you will be equipped with knowledge and be able to ask the right questions at consultations. I get quite swamped when I'm trying to take everything in, but there's no rush I've got plenty of time to learn.

I like you are a great believer of everything happens for a reason, this has been proved many times over in my life and for the very seem reason you suggested , it's thoughts like this that help me get by, I also think (which may be daft) that me getting this has meant someone else hasn't and that makes me more accepting?

You will get through this...Glad you came to vent,, it's healthy to do so and we understand where you are coming from, best wishes.

Welcome! I had this disease since I was 8 (the GI is guessing by symptoms and surgerys) and I was JUST DX a few months ago. (I'm now almost 30). I have a son who is almost 3 and felt very scared too. Some days still scare me when i Feel soo HORRIABLE .

Hang in there