Going crazy

[Cathwilms]

I have not been formally diagnosed with Crohn's, but all my doctors, except my GI are pretty certain I have it. Doctors are my primary, rheumatologist, (I also have lupus) and colorectal doctor. Symptoms started suddenly, 25 months ago. Woke up one day with watery diarrheah and rectal pain and pressure. Had it for 2 weeks straight, every day, 8-12 times a day and no warning or control. Saw my primary doctor and was referred to GI, who did a colonoscopy. Found 4 polyps and removed. One was very large and precancerous. He said no UC and he didn't think I had Crohn's disease. Checked for parasites and intestinal infections and all negative. diarrheah continued on a daily basis. During first year, only had 3 weeks of relief. GI put me on Cholestyramine at a 1/2 scoop a day. Took for one week and did not have a BM of any kind and had terrible stomach pain, and passing a lot of mucous. He told me to stop taking it and take Metamucil and Miralax. After 2 more weeks and no BM, was hospitalized for fecal impaction. Since then, we have tried 1/4 scoop, one day a week and it kills me. Cannot take it. I now, may go 2-5 weeks with no symptoms and then it's back. I never know when it's going to hit and when in this stage, it comes immediately after eating anything also. I can eat a saltine cracker and immediate diarrheah. We have tried food diaries, food elimination diets and nothing helps. I have a lot of pain in my right side, some very mild cramping occasionally and also some bleeding. I have mucosal prolapse, which is awful. I have not seen my GI doc for 6 months because he isn't helping and I have to take immodium just to leave my house. I have lost weight, no appetite, electrolyte imbalances, B12, Vitamen D and iron deficiency. To tired to do anything and it seems no end in sight. I am never hungry and hate the thought of food. Some days the stomach pain is so bad, I rock back and forth for hours or lay in a fetal position. I don't go to ER, because they will give me pain med and tell me to see my GI. No use, hasn't helped. Weird thing is, my lupus hasn't flared up during these 2 years, which is a miracle for me. I was on methotrexate,for my lupus, which caused problems with my liver. Switched to Imuran, which helped for a while and then stopped working. Basically treated with prednisone almost on a daily basis. Could I have had Crohn's and prednisone kept it under control? Idk! Haven't had prednisone in 2 years now. First time in my life of having diarrheah and I am 64 years old. Makes no sense. I have had severe rh side pain for years, which was treated with narcotics through pain clinic and came off that 2 1/2 years ago. They said it was nerve damage. Narcotic didn't always help, as sometimes, so severe, I couldn't move. So here I am, 2 yrs later and getting worse with pain and rectal issues. Any advice would greatly help, as I am losing my mind.

 

[cmack]

Welcome Cath,

I am sorry to hear you are struggling like this, can you get a referral to another GI or IBD specialist? I would try to if it were me, especially since the other doctors seem to suspect crohn's. You are not alone. Come here as often as you like, it's a good place to meet others who can relate and also a great place for support. If you stick around you will probably learn something too.

Kind Regards.

 

[Cathwilms]

Welcome Cath,

I am sorry to hear you are struggling like this, can you get a referral to another GI or IBD specialist? I would try to if it were me, especially since the other doctors seem to suspect crohn's. You are not alone. Come here as often as you like, it's a good place to meet others who can relate and also a great place for support. If you stick around you will probably learn something too.

Kind Regards.

Cmack, thank you. Asked my primary care doctor for a different referral and he wanted me to stay with the one I have, since he has been the one since this started. Also, our house was for sale and has now sold, therefore will have new doctors by August 1st. Hoping for some type of discovery! This forum helps a lot, because even if not Crohn's, it helps to have people relate. Maybe I will learn something that will help me figure this out.

 

[Lynda Lynda]

Hi Cath.
Don't give up.
Having a new doctor should help.
You should not have to suffer like you have been.
I have less experience and knowledge than many folks here, but I still carry the same frustration that comes along with this disease.
I learn a lot here, so when I see a doctor I may already know what he's talking about and I can also become a more active participant in my treatment process.
The folks are nice here.
Keep us updated.
Lynda

 

[Cathwilms]

Hi Cath.
Don't give up.
Having a new doctor should help.
You should not have to suffer like you have been.
I have less experience and knowledge than many folks here, but I still carry the same frustration that comes along with this disease.
I learn a lot here, so when I see a doctor I may already know what he's talking about and I can also become a more active participant in my treatment process.
The folks are nice here.
Keep us updated.
Lynda

Thanks, Lynda! It is a tough battle for sure. I feel like my life is over. Really hoping for a diagnosis and help for whatever it is, when I see new doctors in SC. There has to be an answer. I too, feel that knowledge is key. I know with autoimmune diseases, not everyone has same symptoms, however, I think there are basic symptoms that share a common link. Just learning from this group will be a huge help!