New here

Hi everyone. I don't know if this is the right forum for me, but it seemed like the closest thing I could find. I have suffered with bowel problems for a very long time. The only thing they have diagnosed me with is severe diverticular disease, although they've also mentioned the possibility of colitis and/or crohns. I have changed my diet, gone gluten free, trying to keep healthy, but still having symptoms and pretty much ignoring them. I don't go a day when I don't have some kind of pain in my stomach.

In January 2012 I ended up in ICU with a severe bleed and required 4 blood transfusions. I had already been hospitalized a few times with infections as well. They recommended removal of my entire colon.

I never went back to that doctor and have continued to just watch my diet carefully.

I have stomach pain a lot, like I said, but it seems pretty mild and I just live with it. For the past couple of months, though, it has felt like a burning in my left side and I've had bouts of nausea and just feeling very run down. A friend, who worked as a nurse for 30 years, said I didn't look good and suggested I see a doctor. I went to a new doctor, they did a CT Scan and said it looked like diveriticulitis again. Put me on Azithromycin antibiotics (I'm allergic to the ones they normally use). Finished those up this past Monday.

Yesterday I developed a different kind of pain in my left side. It's like a deep ache that hurts whenever I move. It got progressively worse throughout the night last night and today. I called the doctor and she gave me a refill of the antibiotics and I have an appointment with her tomorrow. She advised going to the ER if the pain got too bad, but it actually seems a bit better tonight.

I've never had much problem with diarrhea but always with constipation. I've managed to keep regular with my dietary changes and fiber supplements. I've noticed I've been going a lot more the past few days.

How's that for an intro? I never thought I'd see the day when I was discussing my bowel issues with, well, anyone! It's just not something I've ever been comfortable discussing and embarrassment has kept me from getting the help and treatment I need.

Any insight anyone can give me would be appreciated so very much. Anyone have diverticular disease and/or have their colon removed? I'm really hoping this new doctor will come up with a better option. Thank you.

Kay

Hi. Thank you for your response. They assumed that it was a diverticular bleed, but they were never able to figure it out for sure because I had a "fixed loop" in my colon that prevented them from getting very far with the colonoscopy. They figure the loop was there due to prior diverticulitis episodes and/or scar tissue from prior abdomenal surgeries (c-sections, hysterectomy). Thankfully the bleeding stopped on its own. They strongly recommended the surgery to remove my entire colon, but I elected not to have it at that time.

What I was told was that prior colonoscopies revealed multiple diverticula throughout my entire colon, and I have had multiple infections and one major bleed resulting in hypotensive shock. Therefore, since I have diverticula throughout the entire colon and have had recurrent problems associated with them, in more than one location, they think it is best to just remove all of it to eliminate any risk.

I have transferred to a different medical group based on its reputation and also referrals from friends. They also have referred me to a surgeon for a consult, and I'm hoping he will have a more conservative approach. I see him on September 4th.

I know doctors have mentioned the possibility of crohn's and colitis, and this particular doctor said that sometimes colitis forms around the diverticular pouches and that's possibly whats going on with me. I'm pretty sure I tested negative for crohn's though, but I'm not sure. They gave me a prescription for Lialda, but I haven't taken it yet. I don't like taking medications and this one kind of scares me with the possible side effects mentioned.

Thanks for the feedback. I'm supposed to take the Lialda with breakfast, so I'm going to do that tomorrow and see how it goes.

I didn't realize colitis could cause a bleed like that. That is very interesting. I do feel like there is more going on than just the diverticulosis because I have some kind of cramping, discomfort or pain almost constantly. The only reason I went to the doctor for my symptoms was because a friend, who was a nurse for 30 years, told me I should see a doctor because I didn't "look good". I only knew I had been feeling a little worse than usual for a couple of months, but never really felt sick even when I did go to the doctor.

The doctor said the CT Scan showed "beginning diverticulitis" and that it was good that we caught it early. But I had been feeling, like I said, worse than usual for a couple of months, so if it was just early stages of diverticulitis, what has been causing me to feel poorly all this time? I'm looking forward to getting some answers from this new doctor. And maybe the Lialda will help in the meantime as well. Thanks again.