Newly Diagnosed with Crohn's

By Jeno106

1 min read

I’ve had a colonoscopy and been told I have Crohn's with proctitis and it all started June 2021. I’m a slim build and lost a bit weight due loss of appetite and fatigue. Started treatment 7 weeks ago on steroids for 3 months and started azathioprine 8 days ago. Thankfully no side effects yet, but I’ve felt very low in myself since being diagnosed with Crohn's, and even more so since starting azathioprine. Is this normal or is it the medication?

I’ve been a van driver for years and I don’t know how but I’ve managed to stay at work full time with a few bad days but I’ve reduced my hours and altered my job last week. My job was stressful and it’s been better since I changed it. Still drive a few hours which is better than giving it up completely.

Having Crohn’s disease is soul destroying and just hope the treatment I’m on works and I can feel like me again.

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Eshani Agrawal Moderator & Contributor
Hi <inline-mention username="Jeno106" user-id="4529174"/>, I'm so sorry that you are going through this period of feeling low. I know that is never a good feeling. I think there are a few avenues to explore with this. First off, it could very well be a side effect of the medication. Have you discussed this with your doctor? It's always good to check in with them about new symptoms. They may be able to help you pinpoint the cause of this feeling and maybe adjust dosages, etc, if they determine it is in fact the meds. On the other hand, I have felt low at different times because of the mental toll that this disease has taken on me. So much so, that I did go to therapy to work out my feelings, especially around self worth. Do you feel that your diagnosis may have caused you to feel any sense of depression? If so, perhaps a therapist could be a next step as well. Please keep us updated on how you're feeing! I am thinking of you. -Eshani (IBD Team Member)
thedancingcrohnie Moderator & Contributor
I'm sorry you are not feeling like yourself. This happened with me as well. In my personal journey it was a combination of dealing with the diagnosis and the meds I was on. I would definitely let your doctor know what you are feeling so they are aware. Also, have you made any diet changes? -Elizabeth (team member)
Jeno106 Member
Yes I’ve spoke to my gp and they have prescribed me with medication. I’ve tried the one of the tablet medications for the crohns but it made me really poorly so I’m recovering from them and been told I got to start biology infusions after some tests. Has anyone been on this and how have they been? there are infusions or self injections and not sure what’s best. 
1. thedancingcrohnie Moderator & Contributor
 Yes, I have been on many biologics. Some are infusions where you have to go to an infusion center, while others are self injections. I think first, it's best to see what your doctor recommends as they all work a little differently from each other. Then from there research your options. -Elizabeth (team member)
2. Eshani Agrawal Moderator & Contributor
 <inline-mention username="Jeno106" user-id="4529174"/> I also wanted to add that I have been on both the self injections and the infusions, so I wanted to share my experience. I don't think there is any way of predicting which one will work the best for you, as all our bodies are different! That being said, the self injections are definitely convenient in that you can do them at home. My infusions (what I'm on now) take 3-4 hours. I did have some more difficulty getting the self injections cleared with insurance and also with making sure they made it to my house each month, so I sort of prefer having my infusion center handle all that. In the end, I think talking to your doctor about your options and thinking about what fits your lifestyle best is important! -Eshani (IBD Team Member)
Lynne.Smith Moderator
<inline-mention username="Jeno106" user-id="4529174"/> just checking in to see how you are doing physically and mentally? Were your physicians able to figure out if the medication was a side effect of how you were feeling? Just know you have a great community here and lots of resources. Sending healing thoughts your way~Lynne S.(IBD.net team member)
1. Eshani Agrawal Moderator & Contributor
 Hi <inline-mention username="Jeno106" user-id="4529174"/>, I totally hear you. I'm so glad you've had your mother and partner there for you, but long distance support can be hard. Thinking of you and sending love! -Eshani (IBD Team Member) 
2. Lynne.Smith Moderator
 <inline-mention username="Jeno106" user-id="4529174"/> thank you for checking in and letting us know how you are doing. I know this is not an easy journey to be on, but very happy to hear you have your mom and your partner's support. I think you will find on here many community members have said that it takes some trial and error to find the right medication that may work for you. Once you get connected with a specialist they should be able to help guide you as well. Be the best advocate for yourself as much as you can, ask many questions and if something is not working don't be afraid to speak up. If you haven't already, take a look at the forum and stories on our site and reach out with any questions. Many on here have traveled this medical journey you are on. Obviously, we aren't medical doctors but we will do our best to help lead you in the right direction to getting the help/information you may need. Wishing you the best~ Lynne S. (IBD.net team member)
Jeno106 Member
Hey thanks for all the replies… much appreciated at this difficult time but I’m feeling a little more positive about going for the infusions as I’ll be looked after while I’m there. Bit of a pain going hospital for a few days and having time off from work but I’m worried about having heart palpitations as I did with azathioprine. Got to wait on test results and if I’m ready to start infusions. I’m a bit nervous but positive this should help me as my brother in law has crohns and been on infusions for a few months now and is much better. Fingers crossed it’s not a long wait to start this treatment 😀 
1. Eshani Agrawal Moderator & Contributor
 Hi <inline-mention username="Jeno106" user-id="4529174"/>, thank you so much for updating us! I worried about side effects of the infusion too, but I was monitored really carefully, especially the first time I had it done. I was also told that most side effects or reactions would happen during the infusion, which is why I was monitored so carefully. I hope you don't experience any side effects, but I feel it's likely that the nurses will keep an eye on you regarding that! And they will definitely stop the treatment if you are feeling unwell. Really hope your test results come back soon! -Eshani (IBD Team Member)
Sahara Fleetwood-Beresford Moderator & Contributor
<inline-mention username="Jeno106" user-id="4529174"/> loss of identity is not uncommon in people with IBD. It might be that you never feel like your old self again. It might change you, and you might have a new normal. This is not always a bad thing. I know many people, myself included, that have grown a lot as a person due to IBD. Strength and resilience are amongst the many qualities that IBD can lead to in people. As for whether feeling down is normal, I'd say yes. You've been dealing with a lot. Steroids can also definitely alter mood. It's definitely a process, often including grief, but you'll get there. Give it time 💜 - Sahara (team member)