Feeling Frustrated

[RedFlamingo27]

Hey guys, I’ve been diagnosed with Crohn’s disease about a month ago now, and I’m just feeling pretty defeated. I’ve been put on prednisone and Imuran and they seem to be working on the crohns side of things, but it’s been making me super dizzy and I’ve been seeing double and having a hard time focusing. As a result of the immunosuppressants I’ve also gotten a virus that affected my inner ear , called vestibular neuritis, and it’s caused vertigo and nausea and a boatload if other things. Just feeling pretty beat down and sad about things, and thought I’d just vent here. Not sure what to do or who to talk to. I’ve also started having blood again in my stool and some abdominal pain again. Just wanting to feel better, having a hard time being optimistic. Thanks for reading

[willow24 Administrator]

Hi hun, so sorry to hear your not well, and it can be so lonely if there is no-one who can fully understand what your going through.

Pred can cause dizziness and fuzzy vision. If you are starting to see blood in your stools again get hold of your consultant ASAP either via the IBD nurse or your consultants secretary - the hospital switchboard can put you through. It sounds as though the pred and imuran are not quite getting on top of things and you are beginning to flare up and ulcerate again.

Your body takes a while to get used to the imuran, so at first you will seem to pick up every thing thats going - it should improve, but you will remain at a higher risk of picking up coughs n bugs. Dont take echinacea, people may recommend this as it boosts the immune system but it reacts with imuran.

Hopefully some of the other guys will offer their support and share their advice. Although IBD has its own set of symptoms it effects us all, especially personally, in different ways. The same with medications and diets, what works for one doesn't always work for another.

I hope we can help xx

[SORRELHIPPO]

I agree with willow24, get hold of consultant, Prednisolone does affect in odd ways, with me over hyped and fits of the munchies, other meds gave me vertigo, nausea, palpitations and dizzy spells. Some I tried for longer as Consultant said worth while. I think many of us have problems after diagnosis. We spend so long trying to find out what is causing the dreadful illnes, and presume that, once we have the name, treatment will follow like magic. The one thing we learn is that we are all different, meds work for some and not others, and some foods are going to cause probs no matter what we do. I can only say, it will be manageable, when the correct med regime is found, and food problems identified. Dealing with the depression with CBT or such, I tried hypnotherapy also was helpful, this is important as stress does make things worse. You will come through it, just takes longer than any of us hope, I think I can say we have all been there and we do eventualy get the answers/treatment that works, just carry on pushing the medics and telling them when the blood reappears. Do come back for the vent, this did not exist when I was first diagnosed, so I just drove my husband insane.

[RedFlamingo27]

Thanks guys, glad to know I’m not alone, I appreciate the kind words of encouragement, advice and will definitely contact my doctor again.

[Jennyhadenough in reply to RedFlamingo27]

I hope that you feel better soon. I haven’t been diagnosed yet. I have been taking prednisone and azathioprine for almost 2 years for autoimmune hepatitis. I take 100 mgs of AZA and I’m down to 5. A ct scan showed mild colitis in my small intestine and my fecal lactoferrin test is positive. I just finished my antibiotics yesterday. Still no change with the bathroom visits but the pain has stopped. I have an apt with my GI for a colonoscopy on the 4th. How were you diagnosed please and what mg/dose of prednisone and azathioprine are you taking?

I really hope that you feel better soon

[RedFlamingo27 in reply to Jennyhadenough]

Thank you! I was diagnosed by a colonoscopy with biopsies that showed granules and inflammation in all layers of my intestine. I did a fecal calprotectin test that was extremely high and my crp and inflammation markers were extremely high as well. I also have. A family history of crohns and bowel disease. I have to do a CT soon to show how much of my intestine is affected but so far it’s my ilium and large intestine. I started on prednisone 2 and a half weeks ago with 40mg a day, and just started tapering and this week I’m on 35mg a day. The Azathioprine I’m on a low tester dose until my TPMT blood work comes back to see if my body can handle and metabolize the full dose needed, but they started me on it anyway because it takes a bit to start working. That’s a long time on those medications! How have they been for you? I’m nervous about taking such strong medications but I know the benefits are outweighing the negative I guess. Just feeling down that I’ve finally gotten a diagnosis after almost 2 years of back and forth with the doctor, only to realize it’s going to be a lifelong battle and it seems like I’m never going to be well again. I’ll feel better and have good days, but I’ll never be 100%. I’m only 21. Am I making any sense? I don’t know lol. Just a lot to process I guess. I really hope you get things sorted out and feel better as well

[Jennyhadenough in reply to RedFlamingo27]

You will get it together and learn what foods are best for you. I’m so sorry that you are feeling bad. It will pass. It doesn’t take long for the test to come back regarding the azathioprine. I thought that Crohns affected the small intestine. I’m still learning and reading as much as I can