My Story..new to Crohns Forum

[MichelleE]

I was diagnosed with Crohn's disease 13 years ago. It came on first with a vengeance right after my son was born. I struggled for a couple of years to get it under control. After 2 peri-anal fistulas, several kidney stones later, it more or less settled for a year or two. It then returned again. My gastro put me on Imuran the 2nd time around and it seemed to do the trick. I was medication free and sympton free for the past 4 years. I was hoping I was maybe done! Anyways, starting in January I struggled with some cramping, however no bowel symptoms made me think it wasn't crohn's related that it had to do with a gynecological reason. After several searches in that area, and some antibiotics, it was discovered that my crohn's was back and wasn't happy! I was in hospital on nothing but IV for 3 days then just liquid for a few more days... then was sent home on a soft diet.
Since my first gastro had retired, I was sent to a new doc and he put me on the Imuran and prednisone right away. Had a colonoscopy to rule out scarring and to see where things were at. He told me I could start eating more regular and see how it goes. I have been doing that and it isn't going well. I have been on the Imuran now for 7 weeks. I am still experiencing fairly bad cramping. It is worse the more solid food I eat. I am getting frustrated as I figure by now things should be starting to get to the point that I should be able to eat some solids. I still have zero bowel symptoms (except pain), and I seem to just be tired, and lacking ambition. The doc told me that the Imuran takes 2-3 months to start working... I was just hoping that it would be closer to the 2 month mark rather than the 3.:ybatty:

 

[Honey]

Hi there, and welcome,
It does take time to get the meds right to settle things. I was on different meds, each causing me unwanted side-effects, until Remicade infusions worked. At least, so far so good! I do understand how frustrating and upsetting too it is when you do not see much difference. I do hope Imuran makes you feel better soon. Crohns is such a fickle and difficult disease to live with! Let me know how you are. Best wishes.
:bigwave:

 

[MichelleE]

Thanks for your reply. I wish I would have stumbled upon this website many years ago as I had soooo many questions when I was first diagnosed. This time around things are so completely different in that the first 7 years of my disease it was diarrhea, cramping, bloating, gas, etc... this time it is just a double me over pain. It radiates to my back and sometimes down my leg. Anyways, I have decided to try restricting myself to a liquide only diet for a few more weeks and see if in that time the imuran can start working. I struggle with the liquid diet thing as it is BORING...and very unsatisfying. Wish me luck!

 

[Honey]

Hi there,
I understand. I was diagnosed with C.D. IN 2011 when pain became too much. You do go through all kinds of emotions with it as the goalposts keep moving, and treatment does not work! You can share with others who are suffering the same, and therefore understand you. I found this site by chance and it is very helpful. It is such a personal problem which you do not want to talk about, but this site gives you that opportunity.
I do hope you feel better soon . Make sure you get enough nutrition. I am on Folic acid and Vitamin D, prescribed by my Consultant. As you are a nurse, you will know more than me!:
:rosette1::sun::rosette1:

 

[jimcon24]

Thanks for your reply. I wish I would have stumbled upon this website many years ago as I had soooo many questions when I was first diagnosed. This time around things are so completely different in that the first 7 years of my disease it was diarrhea, cramping, bloating, gas, etc... this time it is just a double me over pain. It radiates to my back and sometimes down my leg. Anyways, I have decided to try restricting myself to a liquide only diet for a few more weeks and see if in that time the imuran can start working. I struggle with the liquid diet thing as it is BORING...and very unsatisfying. Wish me luck!

Hi Michelle, I am having my second flare up of crohns and like you I have found the symptoms different second time around. Diarrhea for 5 months first time round this time no diarrhea. This time back and side pain whereas last time I had none. It is a strange disease for sure. I feel very lucky when I read other crohn's sufferers stories and I'm sure most would swap places with me and may have considered me to have got off, "lightly". Having said that, I've noticed the miracle steroids did not work their magic this time round so we can only hope our bodies react well with the medication we are given, from what I see here it isn't always the case. Hope the Imuran and liquid diet produce results and relief for you.