Newly Diagnosed

[Deer]

Hi all!

I thought I'd start off introducing myself to the forum with my story.

I'm 22 and was diagnosed with Crohns 6 days ago.

After a good 5 months of doctor appointments, steadily worse symptoms, ineffective buscopan, painkillers, nausea tablets, endless blood tests and samples, it's a relief to know what it is making me feel ill.

I thought I was going mad, or being pathetic and sickly dealing with daily cramps, awful toilet troubles and quite severe pain. It started affecting my work, which was awful especially turning up 5-10 minutes late due to morning troubles and not being able (or wanting to!) explain why.
I tried changing my diet, cutting out alcohol, caffeine, gluten, dairy, hot foods, greasy foods, you name it - I tried it!

Whenever I visited the doctor it would have the unfortunate habit of not being as severe and my blood tests would always show the same level of inflammation - because it didn't change it wasn't seen as urgent!

I was referred (finally!) to GI clinic but unfortunately didn't make it that long as I had a severe (and quite scary) flare up, with a fever and vomiting even liquids, and ended up in hospital for 9 days. I was put on a fluid and steroid drip and given painkillers, which was a wonderful relief - I finally felt no pain and almost alive again!



So I've been out for 6 days and am trying to adjust to the fact I have Crohns.

I'm not sure what the next steps are with this disease? How did you find your "life after diagnosis" continued?

I'm currently on reducing steroid tablets (prednisone?) and am due to visit a GI clinic to start on azathioprine. Anything to watch out for? I've been told there can be nasty side effects...
I have further appointments for colonoscopies and an MRI scan - does anyone have any experience with these? Why do they do them?

I've had some pain the last 2 days, which is worrying, but nothing like what I was having previously. I hope I can continue with being positive about diagnosis - but we'll see how I feel after returning to "normal" life ie. work, commuting, exercise...

Any hellos and shared experiences would be super nice

 

[Clash]

Welcome to the forum. So sorry to hear you find yourself having issues.

The colonoscopy with biopsy is the standard of dxing Crohn's disease but can only see just a bit of the end of the small bowel. An upper endoscopy only sees into the first bit of the small bowel. Since CD can be present from mouth to anus CT scans, MRIs or MREs or pill cams are used to visualize the entirety of the small bowel.

Hope you find remission soon.

 

[ronroush7]

Welcome to the forum. I am sorry that you have Crohns but glad you found this group. I have been on Imuran for years. They check my blood regularly and within the last year had to cut my dosage in half. At one point, I wondered if the Imuran was thinning my hair out but now think it could be because I had an allergy to one of the other medicines. I am 59 and have to have a colonoscopy every two years. Feel free to come on here and share. Best to you.

 

[Deer]

Thanks for the kind messages and the explanations both of you
The colonoscopy and MRI make sense now.

I've had my first clinic to discuss my course of treatment and started on the Imuran today.
Apparently my bloods came back showing I'm slightly below the ideal range for Imuran so my doctors advised to start the dosage low at first and see how it goes.
I get to look forward to weekly blood tests until the next clinic (I suppose getting bloods taken regularly will become normal for me now with Crohns?)

Fingers crossed it agrees with me and there's not too many side nasty effects! Been having a bit of an upset stomach lately so anything that stops that can only be good in my books!

 

[ronroush7]

Sending support.

 

[Tealtulip16]

hello,

after lots of investigation i have been told i have crohns too, only two weeks ago. I am new to this site, and i haven't been able to speak to anyone properly really about my diagnosis so feel a bit left in the dark, but seeking some comfort in reading lots of peoples comments on here especially yours as you are recently diagnosed too! Its really hard to talk to anyone about it as its difficult for others to understand at times as it doesn't appear anything is physically wrong! I'm sure you can sympathise. I have had an endoscopy, a colonoscopy and I have an Mri booked for 15th Feb. During my colonoscopy it was found i had inflammation of the ileum and the doctor performing the procedure said she is sure its crohns and i was given steroids and calcium that day. it was all a lot to take in and i haven't even spoken to my consultant, feel very overwhelmed by it all really! it took me a few days to start the meds as I knew nothing about them and what they would do to me or how they would help. I've had to google everything which isn't always as good as talking to people. i have pain most days some days are ok and some are worse than others. i find the fatigue awful , and the pains usually right side and in right side of my back but I'm getting used to it now i know why. I won't think i have appendicitis every year now and visit the doctors to be turned away regularly making me feel like I'm losing the plot!

hope the steroids are beginning to help

 

[ronroush7]

hello,

after lots of investigation i have been told i have crohns too, only two weeks ago. I am new to this site, and i haven't been able to speak to anyone properly really about my diagnosis so feel a bit left in the dark, but seeking some comfort in reading lots of peoples comments on here especially yours as you are recently diagnosed too! Its really hard to talk to anyone about it as its difficult for others to understand at times as it doesn't appear anything is physically wrong! I'm sure you can sympathise. I have had an endoscopy, a colonoscopy and I have an Mri booked for 15th Feb. During my colonoscopy it was found i had inflammation of the ileum and the doctor performing the procedure said she is sure its crohns and i was given steroids and calcium that day. it was all a lot to take in and i haven't even spoken to my consultant, feel very overwhelmed by it all really! it took me a few days to start the meds as I knew nothing about them and what they would do to me or how they would help. I've had to google everything which isn't always as good as talking to people. i have pain most days some days are ok and some are worse than others. i find the fatigue awful , and the pains usually right side and in right side of my back but I'm getting used to it now i know why. I won't think i have appendicitis every year now and visit the doctors to be turned away regularly making me feel like I'm losing the plot!

hope the steroids are beginning to help

Glad you found your way here. Do you have a definite diagnosis yet? The reason I ask is because I would think he/she would have you on some other medicine.

 

[ronroush7]

I take that back about the medicine.

 

[Tealtulip16]

i was given entocort i think its called? not sure if thats the right spelling without going to check

 

[ronroush7]

i was given entocort i think its called? not sure if thats the right spelling without going to check

It is right.

 

[Deer]

Hey!
Seems we were diagnosed around the same time then!
I feel the same way, most of my family have already started saying I’m looking better etc but I don’t really feel like I am “better” (apart from how I felt in hospital!).

My consultant said from my hospital colonoscopy biopsy they found granulomas (?) which led them to diagnose Crohns. Although they won’t say its 100% Crohns, they’re saying thats what they’ve diagnosed and what they will treat me for with Imuran. I’m finding it a bit odd they can’t say for absolutely certain yet but they are going ahead with treatment.
I have another colonoscopy on the 27th Feb to find out (I think) the extent of the disease.

Are you booked in for a clinic with your consultant at all? I found it cleared up a lot of little questions and worries I had, mainly about treatment going forward.

I’m finding it overwhelming as well when I think about it too much - the thought of regular blood tests really got to me today, kind of bringing home that this isn’t a disease that can be cured (yet) but has to be managed

I found getting a diagnosis such a relief - I thought I was going mad also with my stomach always acting up! I'm still getting pain and toilet trouble but I'm hoping Imuran sorts that out...

I hope your own medication starts to work out for you

 

[fuzzy butterfly]

Hi and welcome Tealtulip and Deer.
So sorry you need to be here,but very glad you found us. It is very overwhelming at the start for sure. So much to take in and understand snd find out about. This is why this forum is so great. Unfortunately in some ways..but so many people to help and advise you here. Those who truly understand how you really feel,are here for you..
We share bad good happy sad times together here, so feel free to share. No question to big or to small or to daft as some say their questions are..
Wishing you both the very best and hope your treatments work well for you. Keep us updated please. :hug:

 

[FightforLauren]

My sister has been struggling with Crohn's for almost 20 years. I wish she would have been on sites like this to help her get through what she has gone. Welcome and I wish you the best. <3

 

[JaimeM]

Welcome to the forum I was around your age deer when i was diagnosed in 2008. I have led a very normal life. I have become very in tune with my body and know when I need to rest. I really didn't have any complications from my crohns until I had my son and went off my remicade for a short time. I'm not on cimzia getting things back in order. Good luck to you

 

[Tealtulip16]

Thankyou all for you kind words, you have made me very welcome.

I haven't met with the consultant yet , or even had a letter. I haven't had results from biopsies , just diagnosed visually from colonoscopy. I'm assuming I will know more after mri.

My husband says I look better from the medication but I think he's trying to make me feel better. I'm worried about the side effects really. But I guess anything is better than feeling like I was. Just rather have some reassurance about taking them etc. it doesn't seem to have helped with the pain just yet. And I'm not sleeping well at all which is rather annoying but might be a mixture of anxiety and the medication? Who knows

The colonoscopy wasn't as bad as I thought the prep was worse!!, have you had an Mri . I'm not sure what to expect

Many thanks

 

[ronroush7]

Thankyou all for you kind words, you have made me very welcome.

I haven't met with the consultant yet , or even had a letter. I haven't had results from biopsies , just diagnosed visually from colonoscopy. I'm assuming I will know more after mri.

My husband says I look better from the medication but I think he's trying to make me feel better. I'm worried about the side effects really. But I guess anything is better than feeling like I was. Just rather have some reassurance about taking them etc. it doesn't seem to have helped with the pain just yet. And I'm not sleeping well at all which is rather annoying but might be a mixture of anxiety and the medication? Who knows

The colonoscopy wasn't as bad as I thought the prep was worse!!, have you had an Mri . I'm not sure what to expect

Many thanks

As far as not sleeping well, did they say you were anemic?

 

[ronroush7]

Thankyou all for you kind words, you have made me very welcome.

I haven't met with the consultant yet , or even had a letter. I haven't had results from biopsies , just diagnosed visually from colonoscopy. I'm assuming I will know more after mri.

My husband says I look better from the medication but I think he's trying to make me feel better. I'm worried about the side effects really. But I guess anything is better than feeling like I was. Just rather have some reassurance about taking them etc. it doesn't seem to have helped with the pain just yet. And I'm not sleeping well at all which is rather annoying but might be a mixture of anxiety and the medication? Who knows

The colonoscopy wasn't as bad as I thought the prep was worse!!, have you had an Mri . I'm not sure what to expect

Many thanks

As far as the medication, the prednisone can make you hungry and give you a moon face. I am on Imuran and they have to check my blood every do often.

 

[fuzzy butterfly]

Hi, I have had an MRI and CT scan they are not to bad really. I just had to lie on a bed that is attached to the machine. Lie very still while the machine takes the pictures. You may have a contrast injected into your arm at some point. You may also be asked to breathe in and hold your breath now and then. Some feel a bit closed in but I found it okay. Hope you get better soon. Best wishes

 

[rahrah2]

Hi,
I am also newly diagnosed in Oct 2015 after severe pain led me to admission to the hospital and then again in Nov. I have been on prednisone since and have recently weaned completely off. Be aware that you most likely (if on it long enough) will get a "moon face" and gain some weight. You will feel energized and hungry all the time. I'm now on 6-mp and humira as a combination therapy treatment and it has worked well for me. Both of these drugs don't start working for a good 3 months after starting them. But I know they are working b/c I have had no pain since being off the steroids. Trust me, I've had my worries and depression around this diagnosis but the good news is there are treatments! Make sure you regularly see your GI doc to get on the best treatment for you. You also may have to make some diet changes. Wish you luck!

 

[fuzzy butterfly]

Hi glad to hear you are doing well. Long may it last. Best wishes

 

[Tealtulip16]

I am not anaemic so far, my symptoms are a little different to some other people's , would be interesting to see if anyone has similar to me. Now I know what's wrong it's made me feel better about the pain I have. It's unbearable some days. I do feel like I have more energy since starting the medication. I'm worried that I haven't spoken anyone properly about my diagnosis , I can appreciate that my consultant will have many patients and a lot of them very poorly , but it would be nice to know some More info from the horses mouth so to speak. I think my ŵorries are keeping me awake , especially if the effects from the medication won't be showing yet. Can't wait to see someone really thanks again for all your words

 

[fuzzy butterfly]

Its a very worrying disease im afraid.. you will feel better with more info n knowledge in tow. Its just a case of one day at a time most of the time . To be fair tho the medics know less than we do who have this. Just bcoz they dont have it n cant know just how it feels to be us. Medicaly yes they know but physicaly no i dont think so. On saying this i would always recommend seeing a doc if you dont feel right. I do if im not happy with me n things dont seem right. Hang in there n find out as much as you can. Beware the scare stories as it is not always like that either. Best wishes :hug:

 

[IrishCrohnee]

Hi all, (34, fit sports guy here)
Sitting here in my hospital bed, still not eaten anything for 8 days now. Tonight got my first IV shot of steroid and another tablet beginning with per i think after being officially diagnosed with Crohns Disease.
3 weeks ago : bad stomach pain, nasty flatulence ..as days went by the pain got worse then the flatulence stopped and the diarrhea started. Cramps, trapped wind , diarrhea , nausea ...went to gp , put on imodium and buxopan... Did nothing. Diarrhea up 15 times a day at that stage , pain becoming unbearable (7/10)... Back to gp... This continued then refered to hospital in excruciating pain 9/10 ... Diarrhea 20 times a day.. Eating cease days previously.
Finally got s few hours relief with iv paracetomol and oxynorm.. Every 6 hours so still alot of distress...still diarrhea 15+ times..still no food.
Blood tests approx 3 per day , stool tests x 4, many scans then CT scan yesterday convinced the 6 medics (1surgical and consultant, 3 GI and 1others) but they needed colonoscopy to confirm which i got done today. Confirmed there and then. Left side colon.

There ugo so. Im gonna be happy when my pain subsides and diarrhea stops and hopefully tomorrow have something to eat when the come round.
Thanks for reading

 

[ronroush7]

Welcome. I am sorry for what you are going through. Hopefully, they will get you on the right mixture of medicines soon. Keep us updated.