Crohn's Disease Forum » General IBD Discussion » I don't know what to do next :(

11-16-2014, 11:36 PM   #1
I don't know what to do next :(

So I got diagnosed with Crohns Disease of the Terminal Ileum back in May.
I was placed on Budesonide for 3 months and also Azathioprine as a maintenance medication.

The problem is that I have had continued pain and everything that goes along with it. Ongoing inflammation was even recently shown on my MRE.

My specialist is encouraging me to stay on Azathioprine (despite me having side effects from it) and we have also been talking about surgery for the previous few months.

Today when I saw him again, he gave me a referral to a surgeon but said that I'm not dying and don't LOOK ill so it's not urgent and to just see him again in January.
What should I do?
I have constant abdominal pain, have BM that go from 10 x plus a day to being so constipated I can't go at all for days, my menstrual cycle is messed up (it takes over 40 days to get it and lasts lightly for 2 days), am so exhausted and fatigued (go to work, get home and go to bed at 6pm), my libido is non-existent (i'm 21!!!), I get headaches, have lost 7kg since may for no reason, get joint pain, am really snappy now over insignificant things, loss of appetite and when I do eat, I end up in pain.

I understand I have it better than other people but is this really what everyday life for a Crohns patient looks like? I'm getting myself so upset over the fact that my life has basically been turned upside down.

Does anyone have any suggestions or something to even just make me smile - god knows we all probably need some of that..

Hoping you are all well.
11-17-2014, 04:22 AM   #2
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Hi laraj and welcome.

Sorry you're going through this. I know how tough this disease can be. The first year can be very tough. Once the proper combination of meds is found and you get into remission things will start looking up.

Is a second opinion an option for you? I think that would be a good place to start.

Sending you my support.
Crohn's Disease
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Ileostomy at 19

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11-17-2014, 09:36 AM   #3
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Sorry to see you are having such a hard time - I agree on the second opinion - all too many times people have silent disease going on with little or no outward symptoms. That being said, it doesn't sound like your symptoms are silent....

It can and does get better with proper treatment, but hte key is not taking one doctors' word and making sure you are as informed as possible.

Good luck, and please do look around the forum more as there is a ton of information here.

30 plus years and counting with UC/Crohn's!
on remicade since 11/05

While my experiences may not be what everyone has had- I feel it is worthwhile to share any and all experiences that may be beneficial to others.
11-17-2014, 04:55 PM   #4
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Join Date: Apr 2013
Hello!! Sorry you are feeling ick.
The Budesonide made me feel pretty snappy, argumentative and cranky ~
The 10x a day bm is usually caused by the active inflammation some go up to 25 times a day. The pain/ constipation can occasionally be helped by a low fiber diet. If you have a stricture or severe inflammation certain foods are tough to pass. Like fruits with skins, nuts, lettuce, mushrooms, popcorn, know what i mean. Gentle foods can help sometimes, also ask about liquid nutrition so your not skipping meals and loosing too much weight.
As for menstruation, for females when the body is very stressed, sick, and struggling often it can almost disappear. Be careful though since you are young and have not gone through menopause yet you can still get pregnant.
Ask to have your b12 checked, iron and d. If you are anemic it can really make you tired.

Hang tough chick, there will be good days!! You are 21, and that is a big reason to smile
11-18-2014, 08:37 PM   #5
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i was gonna suggest blanding your diet out for a short time chicken,white rice vegetable soup well boiled and blended may help to calm things down until your meds begin to bite the 20 plus times a day is horrible, been there its exhausting and bad for if that doesn,t help read the riot act to your doctor.good luck
11-18-2014, 09:53 PM   #6
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See the surgeon, get his take on things.
11-18-2014, 09:57 PM   #7
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You should definitely talk to your doctor and explain how you feel. How long have you been on Aza? It can take about a month to kick in (unfortunate I know). In the meantime keeping a low residue diet can really help. You might even try the paleo or SCD. Some members have had real success with it.
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11-18-2014, 10:28 PM   #8
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Hello from Queensland, I think you've got a lot more things up your sleeve than surgery, has your doc talked about biologics? I.e remicade? Once you've got the inflammation under control things will start looking up. Hang in there
-Are you looking for a new treatment option for your Crohn's disease? If so, I suggest you look into the ongoing clinical trial by Qu Biologics for their SSI treatment. Click here for more information or to help spread the word.
11-21-2014, 12:27 AM   #9
Liquid Bacon
Join Date: Aug 2014
Laraj, what you're experiencing IS NOT what you should expect for the rest of your life. Sure, it won't always be a picnic, but there are ways to get your disease under control. If the Aza isn't working, it might be time to look at a biologic. There are lots of them out there now, with more in the pipeline.

As you start getting the inflammation under control, the first thing you'll probably notice is a decrease in bowel movements. Next, you'll probably notice the pain is reduced or gone altogether. Finally - and this takes the longest - once your digestion gets back to normal, you'll notice your energy levels coming back up.
11-22-2014, 03:09 AM   #10
Thank you all so much for your replies! (Sorry for confusion with accounts, I forgot my pw for this account and was stressing so made that temporary account).

It's seriously really nice to have the support from you all. So thank you.

Currently I've been on Aza since May (so almost 6 months). I have also been sticking to a very basic diet of chicken breast, avocado, tomatoes, eggs, all natural plain Greek yoghurt, iceberg lettuce etc. I haven't really even been craving bad food for once, which is strange for me (I used to be a chocolate fanatic).

My specialist has mentioned starting on Humira after I have this potential surgery. I do have to be careful though as my job entails a higher risk of catching infections than others. I suppose I've survived on Aza so far so hopefully it shouldn't be too much of a problem.

My emotions have calmed down a bit since the other day so I will see what the surgeon has to say and then potentially get another opinion.

In regards to surgery, have any of you that have had resections felt it benefitted you? Or do you wish that you'd tried more options before surgery (if you hadn't already).

Once again, thank you for all your support
11-22-2014, 04:50 AM   #11
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Have you had faecal calprotection done? Have they tested your aza levels?
Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
11-22-2014, 05:48 AM   #12
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My surgeries started because all options failed. Biologics and immunosuppressive drugs were not around. I did feel better for a while. My ileostomy surgery gave me my life again. At my GI appointment a couple weeks ago we were discussing how much surgery I probably could of avoided if remicade was available.

I still look at surgery as a last resort but I think wisdom is important. Weigh all your options and go from there.
11-22-2014, 06:00 AM   #13
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By the time I needed surgery, it was a godsend.
11-26-2014, 10:18 AM   #14
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Hi Lara, sorry to hear you're going through so much pain!! Take a second to look down at my signature and you'll see what my personal timeline to remission was like. As of around December 2011 I've been in full remission with no symptoms. I had 2 years of constant & debilitating pain from when I was diagnosed in 2009. Towards the end of 2011 I told the docs, "hey I don't have the answers but I want to you to know what you're doing right now isn't working and nothing has worked for the last 2 years". That basically convinced them to up my Remicade dose from 5mg/kg to 7.5mg/kg which resulted in my remission. Don't let your doctor tell you what level of pain is acceptable!

Take one day at a time and try not to dwell too much on questioning "Is this the rest of my life?". I asked myself that time after time, "Am I on prednisone the rest of my life?", "Am I on Imuran the rest of my life?" etc. There are so many drugs out there the chances are pretty good you'll find something that works for you eventually. Try to be patient but also try to keep on top of those docs until they find something that gets you to a place where you feel you can live your life.
Diagnosed with Crohn's September 2009

50mg Imuran - Jun 2010
increased to 150mg Imuran - Jan 2011
5mg/kg Remicade every 8 weeks - Mar 2011
stopped Imuran - Aug 2011
7.5mg/kg Remicade every 8 weeks - Nov 2011
Remicade is still working - Nov 2014
Colonoscopy shows no Crohn's! - Dec 2014

Current meds - 7.5mg/kg Remicade
11-26-2014, 02:11 PM   #15
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Join Date: Feb 2013
Location: cocoa beach, Florida
Hey Lara
My advice is to listen to your body with foods. Everyones system is different so trying to find what works as too meds is trial and error just like the diet. No worries on the bad cravings though this will eventually pass and you will not even want to go in the route. Easiest cope for that I found is trying the best to go gluten and dairy free (which I am no master at yet because that means so many items are excluded from the diet) but working in that direction and research of organic foods will really help. Remember those food will trigger your upset and IT IS NOT WORTH IT. Remind yourself. Maybe juicing will help you but I would give your system a break and try liquid for a few days then slowly ease into the good stuff. Also what helps and isnt the greatest but puts me on the right track is prednisone but the doctor has to be in on it also. Try to stay as relaxed as possible because stress will only make matters worse. Look at foods like ginger which help inflammation thats the goal once you get that down you will start to feeling better. Sorry about the female issues dont know about all that lol. Hope you feel better and try that let me know how it goes. Exercising a little helps with strss and in return inflammation as well.

Stick it out and stay positive. Happiness is key.

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