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42 and diagnosed with Crohns

Sept 2012 and my husband had a significant health issue that triggered diarrhea in me, 6-12/day. I assumed it was stress related. 5 months later, multiple attempts to cure myself--more fiber, less fiber, diet changes, probiotics, Immodium and Metamucil and I still have diarrhea and have had 2 "accidents". Finally I go see my primary care doctor. He runs lab and stool tests. Says everything is negative, but my CBC is very viral so wants me to try a short coarse of steroids. They work for 3 days then diarrhea returns. I finish my steroids then call the office. Reffered to GI doctor.
Colonoscopy done and first told I have Ulcerative Colitis, started on Asacol HD. Then biopsy back and shows Crohns. After 3 weeks the Asacol HD has firmed up my stool but still having 3-6/day. After being on med for 6 weeks I now have left upper quad abdominal pain that my GI doctor does not return my call so I see my primary doctor who orders another short coarse of steroids that help my pain. But after they are done it returns and I saw my GI doctor at work and talked with her. Upper GI study with small bowel follow through done, shows some dilated small bowel loops. My pain gets bad enough I left work to go to the ER.
Follow up with GI doctor and she thinks maybe I have it in my small bowel so I do a small bowel capsule study and after that is done my med is changed to Pentasa. 2 weeks on Pentasa and my diarrhea, gas and bloating are back. Follow up with GI doctor 4 weeks later and she says I don't have it in my small bowel but do have a lot of enlarged lymph nodes in my terminal ileum, not to worry but lymphoma must be ruled out and it is, thank goodness. Asacol HD is restarted and Pentasa stopped.
1 week later and my diarrhea is MUCH worse. 12-20/day and waking me up 3-5 times a night. Go to my primary care doctor because my GI doctor basically told me last time she didn't know what to do with me, was referring me to a university hospital. Put on another coarse of steroids that helps minimally.
Currently I am still on Asacol HD, done with my 3rd coarse of steroids and my diarrhea is back like a vengeance, 10/day and waking me at night. Sometimes I can eat other times I can't. My belly is bloated and sometimes I can't even leave the house. At work I have to sometimes run out of my patients room to make it to the bathroom. My university appointment isn't until mid September. That will be 1 year from the start of all this and I am still in a flare up.
This am I called my GI doctor with an update because my next appointment is not for 2 weeks and I can't wait until then. But I am still waiting for a phone call back. My gut tells me I will not hear from them and will have to call my primary doctor again.
As a nurse I know some about Crohns but I have also read 3 books and talked with my 2nd cousin who has it and with my pharmacist at work about med options. I know there are other meds to try and other things to do, I just need a doctor to help me out some. Crohns is so individual so I feel alone. I might look ok on the outside but feel like someone is twisting my guts on the inside.
Joined the forum to get information and ideas and maybe to help others not only know they are not alone but maybe something I have gone through or am going through will help them. The upside of all this is that it has made me a more compassionate and less judgemental nurse and they found and got rid of a precancerous polyp before it could cause trouble.
 
Hi, welcome to the forum. My 16 yr old daughter has crohns I'll try to keep this short and maybe you can benefit a little from our experience. Leah could not get off steroids without flaring until she was put on LDN when she was weaned down to 10mg pred. Stress is a factor as well as some foods, a food allergy test helped a lot to know what to stay away from a lot or a little, I mean she is 16 :)
When she's flaring she can only eat mashed potatoes, Mac n cheese homemade no processed food
It took about 6 months on LDN to see her back to normal but within a week her symptoms were better. Periods would throw her into a flare before LDN also.
Along with LDN she takes a probiotic, iron, multivitamin, vitamin D and apriso (only to keep the GI happy)
You've came to the best forum out there for information and support.
Hope you feel better soon.
 
Ask your Dr. to put you on Questran. It works great for many people on here to form stool and no more Diarrhea. It works wonders for me. I couldn't live without it now.
 
Wow, thanks for the support and advice so quickly. Not only did I have emotional stress from my husband's illness, but I also was in physical stress from having my last ovary taken out in July and going into surgical menopause at such an early age. I have asked the doctors if they think the hormonal aspect has anything to do with the inability to control my flare and they all have said no. I am contemplating asking for small dose of Premarin to see if that will help. I do take Estroven and it helps with the menopause symptoms. Also, have thought of Questran but right now when I have formed stool I have the left upper quad pain. I am not sure which is worse the diarrhea or pain.
 
Wow, thanks for the support and advice so quickly. Not only did I have emotional stress from my husband's illness, but I also was in physical stress from having my last ovary taken out in July and going into surgical menopause at such an early age. I have asked the doctors if they think the hormonal aspect has anything to do with the inability to control my flare and they all have said no. I am contemplating asking for small dose of Premarin to see if that will help. I do take Estroven and it helps with the menopause symptoms. Also, have thought of Questran but right now when I have formed stool I have the left upper quad pain. I am not sure which is worse the diarrhea or pain.
I am on low dose hormones and antidepressant. Good thing or I would be a lunatic most of the time. The questran is something you can adjust to your symptoms. Take it as needed. Sometimes I need it for days and then it stops. Then I don't take it till the bad D starts again. :) I get alot of pain too and after I go, it seems to stop.
 
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