GI Appointment - Crohns and "Tons" of Diverticulosis

OK Stacie . . . thanks for the scoop . . . The quote you chose for your sig is perfect!!!! WAY! Blessings!

Hi Rosie,
My mom is on that. We both have diverticulosis all through the colon but we also have an odd gi problem that is not crohns but is a type of inflammation currently under research, there is no name for it. It is treated with entocort, but I have yet to get that. I haven't had problems for a while, cross my fingers. Flagyl seems to help the problem we have but neither my mom or I can keep it down and sometimes even that doesn't work. My mom was taken off it after four weeks and had to be put back on. I'm also afraid it might make you prone to gi bleeds, like other steroids, I don't know. I do know that we both started with irritable bowel, and I have kept mine under control with bentyl (dicyclomine) and antispasmodic, though the damage has been done. Had my gi doc listened to me and prescribed it two years ago, I wouldn't have but one diverticuli. Now it's all over. I feel for you because it's a constant pain in the neck. One thing to keep track of is that if you get diarrhea with undigested food, it is usually a small intestine problem, vs diarrhea with digested food. I got a gi bleed in the small intestine and couldn't digest food properly for a long time. Staying of steroids finally fixed it. I feel for you Rosie and know you don't need another problem, especially not a "glamourous" (NOT!) one like this. I know it gets really bad and painful. You might ask about the bentyl, it does bing you up some, if you can take it and keeps the spasms down (so does donnatol). Take care and hope you feel better and can go off it at some point. My mom and I went into remission for like ten years, but now that her immune system is breaking down, I don't know if she will get rid of it.

Hey Babs . . . YUP! The bridge painting is extremely helpful just now!! I really think I've got my mind wrapped around this and then I get a really sad feeling and realize it is bugging me I haven't told a lot of people yet, because I just feel like everyone will just start to "glass over" when I add another medical issue. I emailed my four kids and d-i-l so the boys wouldn't have to "talk" about "the colon". They were really sweet . . . but none of the boys used ANY terms that would pertain to the issues. So I think the email was appreciated. That way they could look up anything they want and talk to me about anything they want. Of course, I was on the phone with my daughter the day after the dx. She is very good at "reading me" and had tells me when I'm looking fragile. And . . . I've had to hang up on her many times with gripping pain . . . so she's been waiting for some Dr. input. Thanks so much for your encouragement it is so appreciated. (I'm trying NOT to know that I've got to narrow down my food list some more!!! and I am SO sad for all of you/us who have to limit food choices! Marji . . . Oh dear!! I'm just always shocked at how much some of you members endure. I was looking at your signature (and the others too) and I guess I had just stopped doing that for a long time. It seems like if you've got more than one or two ills, it explodes exponentially. I sure appreciate all the info about the meds and foods and how it affects things. It makes some things easier to deal with when you understand them first. It must be hard not having a name for your GI issues, but I'm glad you have a doctor who is working with you to find a way to quiet things. What is your mom's screen name?? Thanks sis for all your help! Red . . . OH Good! You've helped me a lot. This rx part was really bugging me. I was afraid of the meds doing more damage than good. She actually mentioned Asocal as well . . . *phewww* it's so good to get the little pieces settled in my mind. I so appreciate your help. To all my Healing Well friends: One again this forum has been such a God-send. It is so great to be able to come here and talk to others who understand. I am way blessed in that my family is so supportive . . . but its just not the same as talking to others who are in the same boat. The sadness I woke up with today is greatly lifted with all the encouragement and info from so many members here. I do appreciate each of you!! Blessings!

Thanks Carol . . . well, one thing's for sure . . . this "stuff" has been here for a LONG time and I just finally went to the doc for it. I've been hiding the gut pain for a long time and finally go scared enough to seek help. BUT . . . to my shock it took literally MONTHS to see a GI doc. The eye issues have been getting worse over time . . . but for now, the OTC drops are really helping. And the the most recent gut flare is simmered down. YEAH! Diverticulosis is the pockets that form in the gut. Diverticulitis is when they become infected. Funny thing is, I've been the fiber queen for quite some time! Crohn's is the immune system attacking healthy tissue anywhere between the mouth and the exit, most commonly where the small intestine meets the large intestine. Mine is right there, at the end of the large and beginning of the small. Although they have only inspected up to that point so I don't think there is further up, but hopefully the meds will get it if there is. I hope you've been better lately. Thanks for the hugs and encouragement!! I really appreciate it. Blessings!

Thanks Harmony . . . hug gratefully accepted!

It's all a conundrum Navy. I have been dx'd and then undx'd with Lupus. (although my medical records still indicate SLE even though the rheumy was adamant that it is no Lupus) I am currently going under the dx of UCTD (undifferentiated connective tissue disease). I have the malar rash of Lupus and the super sun sensitivity (for me sun causes rashes on the backs of my hands and chest similar to poison ivy . . . it also causes disease flare). I had a high antibody level for hashi which was gone last time they checked. The eye doc is assuming it is sjogrens . . . lots more tid-bits like this . . . but now the crohn's dx makes me wonder about everything else . . . I see my rheumy at the very end of May . . . so we'll see. Lots of questions for both docs. Meanwhile I feel a mixed blessing of having been dx'd . . . but having to deal with the "new" disease. I sure appreciate all the help. Blessings!

(((((((( Barb )))))))) How very sweet of you Barb! I really am in a bit of confusion. I'm trying to decide whether or not to take Entocort (Dr. recommended 9 mg/day) or to "wait and see" what happens. I don't want to ignore this, but I don't want to start more meds unless I really need to because this is a steroid and although it supposed to be safer than some, it still has some potential side effects. I really, for the most part, am doing quite well. I do have periods of flare with the gut issues . . . which I have ignored (chosen NOT to get medical help) up until recently . . . but I don't want to be stupid either. I have read about potential issues with scar tissue, blockage, fistula etc . . . and don't want to risk that either. I'll be making a decision in the next few days/weeks . . . and am waiting for a bit more input from the GI doc. Thanks again for your kind encouragement. I think about SO often and pray your days are not too miserable. I hope you are well enough to enjoy a little "recliner sport" like knitting . . . such a great diversion if you are well enough to concentrate a bit. Very therapeutic and lots of great on-line instruction and free patterns. I often listen to a book-on-tape while I'm knitting or chrocheting. The time FLYs and I've got a little treasure to give as a gift. Thanks Barb. Blessings!

Hi Victoria . . . Arghhh! sorry to find yet another lupus/chronie . . . scary! Would triggers be like with Lupus: sun, overdoing, stress???? or food? I haven't been able to pinpoint any foods yet. When there is distress, even drinking water causes trouble . . . so I just don't know how to figure it out. I guess I need to do a bit of symptom journaling and work backward when it hits next time. Thanks for your encouragement! Blessings!

I am thinking of you, Rosie, and hoping you find your 'special pattern' soon -- it's got to be hard not to know when this kind of thing will flare. I know you are strong and that you will figure this out...it's just so crazy that so many of us get hit with multiple issues.

Hi Rosie,

   Tks for the update. I'm glad to hear you are doing pretty good otherwise. Hopefully, you will get the results in a couple of days. I'm sure this new dx is overwhelming to say the least....((Hugs)). Rest and relax with a nice pot of tea today sis!

    Keep us udpated and take care. You are in my thoughts and prayers.

                                                                 Babs