I've been surfing these forums for almost 2 years now, and thought it's about time to contribute.  In the post my goal is to provide a summary of what i've been through, and in the future I will be posting on many topics with the ultimate goal of providing knowledge to those in need.

I'm 34 years old, diagnosed with Ulcerative Colitis in April of 2011.  The extent of the disease was throughout my entire colon, I believe they call this pan colitis.  My first flare lasted months, Asacol had no effect and I stopped the prednisone due to swelling in the feet (which I later found out wasn't a big deal).  I suffered two bad flareups before I was put on Remicade, which gave me 2.5 years of remission.  One day i started to get sharp chest pains, went into the ER.  My eyes started to swell badly around the same time, and I was diagnosed with Sarcoidosis.  They pulled me off Remicade and I've never had a Sarcoid flare since (one year of Imuran for the Sarcoid).  After that I stayed away from medications for a few months, only to go into another flare up.  I was then placed on Entyvio which gave me one year of remission.  (Side note: during all these years I've had many issues on top of UC including kidney stones, DVT, and GERD).

In 2018 I got accepted to UCR, and moved back to California from Seattle.  This is where things got very bad for me.  It took 2 months for California to approve my request for Medi-Cal.  By the time I got into to see a GI doctor, I was already having flare up symptoms.  I had to fight with the doctors to get an Entyvio script, because they had no access to my Seattle health records.  By the time I got a GI to prescribe it for me, something I never anticipated happened.  My school had provided me with healthcare coverage without informing me, no email or mail.  Since I was living in Seattle I was unable to attend orientation, and this little bit of information slipped by me.  My Medi-Cal was willing to cover Entyvio, but the school's insurance DENIED the doctors request.  At this point I was in the worst flareup I've ever experienced.  Massive amounts of blood loss every 45 minutes with bowel movements.  I went to the ER and received blood transfusions and pain meds, along with hydration.  They put me on steroids, but refused to do ENTYVIO in the hospital.  I stayed in Loma Linda hospital for 2 months before I had the first of 3 surgeries.  (Side Note:  The hospital story is unreal and will require a post in and of itself for everything I went through.  I had to fight with doctors day and night).  I didn't want to have a bag, like everyone else, so I tried everything including cyclosporine, antibiotics, and even entyvio again.  I contracted C DIFF and my weight was down to 113 (about 30 pounds lower than my healthy weight).

After my first surgery I had trouble eating and gaining weight.  I wasn't eating at all until they put me on MEGACE.  At the same time I was having blood and discharge from the rectal stump, along with a pressure like pain daily.  5-6 times a day I had to rush to the toilet just for the rectal stump,  plus 8-10 times for the ostomy bag.  I had my Second surgery at UC Davis Med Center in Sacramento.  After that surgery I suffered an ABSCESS and SMALL BOWEL OBSTRUCTION.  The loop ileostomy caused me nothing but problems. Skin breakdown and itching made my life miserable and I never left the house.  Things were looking great when i finally made it to the takedown surgery.  The first week was amazing and I thought this was the greatest decision I've ever made for my colitis.  Then CUFFITIS.  I started having about 15 painful bowel movements a day with heavy straining, small amounts of blood.  I was expecting incontinence, but this was the opposite.  After a pouchoscopy the doctors said this was the worst case of cuffitis they've ever seen, and that I would need to start medication.  I failed them all starting with MESALAMINE SUPPOSITORIES, BUDESONIDE, PREDNISONE.  Now I'm back on ENTYVIO.  It seems to be helping a little.  I'm down from 15, to 8-10 bowel movements a day, most painful.  I can't gain any weight even though I have a healthy appetite.  Tired and fatigued a lot.  Various pain medications failed me, and now i'm in the process of weaning down off of BELBUCA.  The consensus is that if the ENTYVIO doesn't work out, the only option is surgery to advance the pouch or take it away entirely.  

This is just me personally, but I would rather live a life with moderate pain and no energy than have an ostomy bag again.  I'm one of those people where I just can't handle it.  Cheers to those who can.  This is the first of many of stories and experiences I have to share with my fellow IBD/JPouchers, and I'm excited to get involved in this community which has helped me tremendously.  

If it wasn't for this forum, the doctors would have just sent me home with antibiotics without doing any further investigation.  I never would have caught the pelvic bone inflammation that might be an infection on MRI, and never would have received proper treatment if it wasn't for the knowledge from this forum and other websites that have been linked.  Thank you all so much.

David

Original Post

david, im literally brought to tears from your story as I do know what you’re going through and have a similar story myself. 

do you think you’re allergic to any of the medications you’re on? how are your bms after each entyvio infusion? 

what is your diet like? are you on a good probiotic? staying away from bubbley drinks, caffeine, sugar, fried foods? I too was at the verge of death with my colostomy bag and found that diet is really key for us. 

 

I hope you find relief soon! my thoughts are with you,

bri

barefootbri posted:

david, im literally brought to tears from your story as I do know what you’re going through and have a similar story myself. 

do you think you’re allergic to any of the medications you’re on? how are your bms after each entyvio infusion? 

what is your diet like? are you on a good probiotic? staying away from bubbley drinks, caffeine, sugar, fried foods? I too was at the verge of death with my colostomy bag and found that diet is really key for us. 

 

I hope you find relief soon! my thoughts are with you,

bri

Hi bri!  Thanks for reading my story.  I feel like the Entyvio is helping definitely.  It kept me in remission when I had my colon.  As far as diet, I don't drink alcohol (it's super rare for me to even have a glass) since i got diagnosed, I stay completely away from fried foods (only a handful of greasy foods in the 8 years I've had UC), I rarely drink soda but I do treat myself to a sprite occasionally (once every two weeks), and sugar I swing back and forth.  I love smoothies they seem to work for me pretty well, but the sugar content can be high if I don't make my own (like when I go to Jamba or nektar).  Where are you at right now in this process? J pouch? Permanent bag? In between surgeries?

Ashley Dolvin posted:

Wow!!! Your a true warrior and I always say there are people out there that have it worse. I feel your pain ....your a fighter and a hero in my eyes.  Bless you and I’m glad I got to read your story ❤️🙏🏻💪🏼

It's funny you say that "have it worse".  I worked as a patient transporter for radiology in a hospital.  I got to see a lot of patient charts and talk with various people.  There's always someone who has it worse that would kill to have your situation. I imagine someone dying from cancer would gladly take 10-15 painful bowel movements a day, or someone who is blind might even trade up just to be able to see again.  It helps us keep things in perspective.  At the end of the day, if your are suffering at any level below healthy, it's a huge challenge.

I'll tell you one thing I think we are truly blessed to have, and that's the internet and this community.  Being sick can keep you isolated from others, and this is a great outlet so that you don't feel alone.  I image if we all lived within driving distance of each other, we'd probably all find ways to get together even when we aren't feeling well.  Thanks for reading and keep on keepin on!

David, i do feel for you. I think diet is the best way to approach any changes. I've recently been put on this: https://www.umassmed.edu/globa...dated-aug-1.2019.pdf.

 

I had a wild ride. I was told I couldn't get pregnant, dad died, got pregnant, started seeing a little drop of blood in my stool (under major stress but didn't realize it). Had an emergency c-section... pooping like 6 times a day. Went in to see the OBGYN and she TOUCHED my stomach and told me I had an infection, was on three days of IV antibiotics that I was actually allergic to and then the real ride began. Two years, 21 blood transfusions, remicade, entyivo, 4 hospitals, an accident in an ambulance ride, split open head, ostomy bag, 4 surgeries, over 6 months in the hospital and i'm finally bag free and somewhat on the mend. Mashed potatoes, and things that bulk up my stool, imodium, lomotil do the trick for me. A serious probiotic GARDEN OF LIFE 50 and wiser works for me - three times a day and NOTHING else. 

 

The drugs are insane and have so many bad side effects. It's wild! I really wish you the best of luck! i feel for you! 

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