Hello. So much information here, rather overwhelming at first. Not sure where to start. Troubled by IBS most of my life. Started bleeding about 1.5 years ago. Colonoscopy showed proctitis. Tried a few different meds, nothing helped. Finally asked for referral to GI. Another colonoscopy (woke screaming mid way) and he finally prescribed Canasa supp then Apriso. Weaned off the Canasa successfully, Apriso worked.
Feb 2015. Extreme fatigue beyond anything I have ever experienced. Had some D on 7th. Immodium stopped it. The following weekend explosive liquid D started and never stopped. Thought I had a bug from work. After day 4, I called GI. They suspected C.Diff. Culture came back negative. Told to continue immodium. I could not function, eat, sleep or anything. On day 10 after calling the GI's office and stopping to see my PCP, I checked myself into ER. After 3 hr wait, they told me they would give me IV, then release me. Took some blood work and reevaluated. I had kidney damage from dehydration. 9 hours later I was admitted. Spent 5 days on IV. Retested for C. Diff. No change. Finally got Dilaudid for pain. Some relief.
Finally another colonoscopy (with full anesthesia). Result, full blown Crohn's, entire colon and small intestine. Started me on 60mg prednisone. Appetite came back. I had eaten 3 crackers in 4 days until then. Ate Friday, asked to be released. Went home 20 lbs heavier (fluid!) They have been tweaking all my BP meds and such. Put me back on one that is also diuretic, that helped the weight slide off a bit. Waited a week to be called back to Dr. He suggested Remacade, but we decided to go with Humira. I got prior approval from Insurance co today and am just awaiting call to go in and get meds and training. I want this D to stop. Day 24 today...had enough. I am nervous about the meds as I have other auto immune disorders and not sure how I will react. I have had allergic reactions to other meds in the past, so keeping fingers crossed. So far I have not followed any other textbook typical symptoms, criteria or patterns for these diseases. I am not in my 20-30's, I did start with IBS - told it would not progress to IBD, which it did. Then I was told the proctitis would not escalate, which it did I guess. Not really sure on that if it a totally separate disease that I still have right now or not.
Whew, not much compared to some other stories here. So many different experiences, processes and thoughts. Gives me pause....obviously some things work for some and not for others. Still remains to be seen which category I will fall into I suppose. Fingers crossed that it's a successful one! Thanks for listening. So sorry for the insidious reason that we all connected, but it is nice to not feel so alone.
Feb 2015. Extreme fatigue beyond anything I have ever experienced. Had some D on 7th. Immodium stopped it. The following weekend explosive liquid D started and never stopped. Thought I had a bug from work. After day 4, I called GI. They suspected C.Diff. Culture came back negative. Told to continue immodium. I could not function, eat, sleep or anything. On day 10 after calling the GI's office and stopping to see my PCP, I checked myself into ER. After 3 hr wait, they told me they would give me IV, then release me. Took some blood work and reevaluated. I had kidney damage from dehydration. 9 hours later I was admitted. Spent 5 days on IV. Retested for C. Diff. No change. Finally got Dilaudid for pain. Some relief.
Finally another colonoscopy (with full anesthesia). Result, full blown Crohn's, entire colon and small intestine. Started me on 60mg prednisone. Appetite came back. I had eaten 3 crackers in 4 days until then. Ate Friday, asked to be released. Went home 20 lbs heavier (fluid!) They have been tweaking all my BP meds and such. Put me back on one that is also diuretic, that helped the weight slide off a bit. Waited a week to be called back to Dr. He suggested Remacade, but we decided to go with Humira. I got prior approval from Insurance co today and am just awaiting call to go in and get meds and training. I want this D to stop. Day 24 today...had enough. I am nervous about the meds as I have other auto immune disorders and not sure how I will react. I have had allergic reactions to other meds in the past, so keeping fingers crossed. So far I have not followed any other textbook typical symptoms, criteria or patterns for these diseases. I am not in my 20-30's, I did start with IBS - told it would not progress to IBD, which it did. Then I was told the proctitis would not escalate, which it did I guess. Not really sure on that if it a totally separate disease that I still have right now or not.
Whew, not much compared to some other stories here. So many different experiences, processes and thoughts. Gives me pause....obviously some things work for some and not for others. Still remains to be seen which category I will fall into I suppose. Fingers crossed that it's a successful one! Thanks for listening. So sorry for the insidious reason that we all connected, but it is nice to not feel so alone.
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