GI Appointment - Crohns and "Tons" of Diverticulosis

*Sigh* Just got the grand update from the new GI doc. I finally had the c-scope two weeks ago and the follow-up appointment today. Turns out that all the GI pain and other "bathroom" issues are being caused by "tons of diverticulosis" (her words) and most probably Chrohns. She did several biopsies and it is almost certain. I'm not sure how this kind of thing can be "almost" . . . but she said the each will aggravate the other and make confusing pain. She wants to start me on Endocort and/or Asocol (sp??). I needed a few hours to take all this in and am just now starting to look up some info for both issues. *sigh* But . . . I have still been able to be more active than a while back . . . so still feel blessed. I'm hoping that with this new dx comes less frequent GI attacks and all that comes with it. Sorry I haven't been around much . . . I'm really trying to do less thinking about all this medical stuff . . . but . . . now a new rabbit trail to chase down. I made myself a nice pot of tea and will be checking out the info on the Chron's forum here. On a good note . . . we've had some spring-like weather and the daffodils are blooming . . . YEAH!! Blessings!

Rosie I used Entocort for quite some time and it worked very well. I tried asacol and it was a no go . Colozal is the drug of choice but to be honest I cant get off steriods and I think that is my lucky charm as far as GI goes.

xoxoxox I really! wish you the best. It sucks to have GI disease whatever it is

(((((Rosie))))) I'm sorry to hear about the new health problems. It just seems like once people get one AI disease, things can slowly snowball with other health stuff. As if lupus wasn't enough to deal with. I hope the GI problems can be controlled well and that you continue to have more energy. Keep us updated on how things are going. Lots of hugs and prayers.

Oh Rosie,

 

I'm so sorry my friend.... You don't need this to add to everything else.  You're so positive about it all.  An inspiration to the rest of us when we get down and out!!!!

 

Dance in the daffodils Rosie! We just got some lovely crocuses popping up! 

 

I'll be praying for you,

 

Ginny

(((( Rosie )))) if I could I would eat a donut for you too!!!!! Bless your heart, you are in my thoughts and prayers.

Stacie . . . send you a cyber-donut . . mmmmmmm . . . no guilt. Navy . . . I'm actually having very little symptoms right now. The big pain and associated issues come sporadically. After your caution about the donut . . . I hope I don't send myself into a flare. I've been trying to eat healthy and eliminate sugar etc. . . . but the comfort food was calling my name yesterday as I wrestled with these new dx's. I find it very helpful to do the "best case" "worst case" scenarios and then move on to do best self-care and enjoy each good day. Your encouragement is appreciated and I'm sure I'll be pestering you and the other crohnies before long. My tea at full enjoyment as I hold the warm cup. Lots of times, the tea remains in the cup and reheated several times just for the pure pleasure of holding the warm mug. My favorite is Lemmon Zinger, but I usually blend a couple different types. And it serves well here at the Lupus forum . . . LOL!! Tea for all!! Blessings!

AKKKKK!! When my gut is raging . . . I haven't found any food that doesn't cause trouble . . . but are you saying that the raw veggies will 'cause' trouble? or add to an already aggravated gut???

Thanks Barb . . . I'm a really healthy woman compared to you and some of the others here. I'm just always glad its me and not one of my kids or hubby. I keep telling him that this is all harder on him than it is on me. I know I'm ok but he is so protective and worries about me. In that respect, I'm hugely blessed!! I hope you've been doing better these days. You've been through SO much the last couple years. Hot tea for all of us!! Blessings!

Thanks Navy . . . Gosh! I haven't read enough yet to realize some this whole new regimen. I'm still a little shell-shocked as I hadn't expected such a dx. But . . . my good days way outnumber my bad . . . so maybe with a little more education, I can keep things running smoothly. Thanks for your tutoring!! Blessings!

(((( Rosie )))) I can't eat a lot of raw veggies or fruit either I ate an orange last night and woke up with severe cramps this morning. If I am going to be traveling I stay away from salads, fruits, etc and I could live off fruits and veggies. When I am flaring the only fruit I can have is canned pears, it may sound gross to some, I get it in the light syrup... at least it's fruit.

Hang in there sis, love ya!

Babs . . . you are so sweet! Thanks for the concern. Stacie . . . AKKKK that's awful . . . I don't want to think that I can't eat the raw veggies and fruit. But I'm sure watching to see what is the culprit. I can't believe that so many people live like this and can't get out of the vicious cycle. My gut issues has lasted about a month at a time max. Sometimes just a few days. But I've been heading them off with meds. Your comment about salads rang some bells too. When I was working, I had to come home early from work because of instant stomach problems after eating at a salad bar . . . I thought it was the preservatives . . . never thought about it being the salad. I had to quit eating salad out. I actually didn't even make it to the bathroom sometimes and had to come home and take a bath . . . ewwwwww. Never dreamed it was Crohn's! Just thought it was a stomach bug or sensitivity. Thanks for the tip on pears. I'll have to stock some in my pantry. Do you do ok with bananas. They always seem like a safe food for me. Hi Sherry . . . thanks so much for the offer of info. I'm sure I'll need it. I was actually prepared to learn that I had UC . . . . but I wasn't prepared for the CD . . . I just figured if it was Crohn's it would have showed up in previous c-scope. But that old scope DID show diverticulosis and inflammatory bowel and that darned doc told me to eat more fiber and come back in a few years for another scope. So . . . all along I've been ignoring all this pain, bleeding other issues. The new GI was really mad when I told her what the previous doc said. She thought I misunderstood him until she looked at my insides. She said the worst inflammation is in the ileum and in the large intestine right where the large and small intestine connect . . . which is the most common hang-out for crohn's. I'm waiting on IBD7 test results and she gave a script for Entocort which she is pretty sure she'll have me fill after she sees the IBD7 results. I do have a question about the Entocort . . . if you might know about it. I was feeling pretty safe with it when she said it concentrates in the gut and doesn't give the problems associated with other steroids . . . but what I'm reading online sounds like it really can still cause bone loss, weight gain, high blood pressure and diabetes. My prescript ions is for 9mg/day x 3 months with 4 refills. I hope that doesn't mean this will be a maintenance drug. I wouldn't mind taking it for a couple months and then tapering . . . but I'm scared of taking it for a long time. As luck would have it . . . I'm starting another flare with the pain and frequency . . . she told me to take the medrol dose pack that I have on hand . . . so I'm hoping this flare will disappear. I've made myself some potato soup as Navy suggested and had that for dinner last night and b'fst and lunch today. Mornings seem to be the worst. Thanks again for your kind offer . . . its so nice to know where to get help. Blessings!

Lynnwood . . I wondered the same thing. In fact, I was sure it was simply autoimmune issue just like my connective tissue issues. But then, I have never tested + ANA and my docs don't agree on whether I have Lupus or UCTD. Not sure exactly what they look for in the gut biopsies . . . but from the looks of things on the crohn's board, many there are waiting for a dx . . . just like here. Always more questions than answers. But the solution would be the same . . . anti-inflamms for the gut. Now the diverticular disease, I believe, is a separate issue and quite common in the general population. The GI doc says that the crohn's will activate the diverticular disease and visa-versa. Explains a lot. I did mention the disagreement between docs about the connective tissue disease and she said that this "may" be the cause. LOL . . . wouldn't it be funny if I've been in the wrong forum all this time???? How can you tell where your pain is located??? I haven't been able to really zero in on that . . . but, I've had right sided, left sided and center pain, as well as pain higher up on the right . . . very confusing. Interesting info about the valve . . . I know so little about all of that. I'm not sure I'm ready to take on all that . . . but I guess I really should. *sigh* I hope you get yours figured out too Lynn! Blessings!

Sherry . . . "baby" ??? Meaning mild??? As in this is a good 'first' med??? This doc is Cleveland Clinic and as little as I know about all of this, I feel like I just need to trust her . . . I just don't want to go into any treatment with blinders on. But "baby" sounds like its a good thing. Thanks SO much for your help. Sorry to all the lupans for highjacking the lupus forum for my crohn's junk. Blessings!