Introducing myself

[CharlotteLucas]

Hi, I am waiting for a bunch of tests to be completed to see if I have Crohn's. I have a diagnosis of IBS and Interstitial Cystitis so when my hysterectomy did not make the pain go away, I started focusing on what foods cause pain. After a year an a half and a weight loss of almost 100 pounds the answer seems to be - all foods cause pain, and no food still means pain. I have constipation followed by painful diarrhea, sometimes cloudy, but no blood that I can see. Pencil stools. It used to get worse with my period so I always though it was gyno. But since I had all that removed obviously it was not the source of my ongoing and worsening pain. I have also had recurrent illness including weird diseases that adults usually don't get like Fifth Disease and Hand Foot Mouth and constant colds until I stopped working. No one else in the house including the kids got either of those "childhood" illnesses, just me in the year before my hysterectomy. So I wonder if I am immune deficient from Crohn's too. I have had a flex sigmoidoscopy 16 years ago that showed nothing but did not examine the ileum which happens to be the area where I have worst pain now we think. And now I have given them samples and they took blood and did a cat scan, now that I have lost all this weight they take it seriously, and I have endoscopy and colonoscopy coming up in the next week and a half. I have not met the doctor yet. My primary doctor thinks it sounds like Crohn's and that is why he sent me to specialist. I am 46 but have had chronic pelvic pain for 20+ years, but the weight loss and loss of appetite are new symptoms as of the past year or so. I quit working because of pain and fatigue just over a year ago.

This is all really hard for me and I am just looking for any kind of support really. Thanks.

 

[ronroush7]

Welcome. I am sorry for all you are going through. There is lots of support here.

 

[teeny5]

Sorry to hear you are having such a hard time. Sending you HUGS.

 

[CharlotteLucas]

Hey thanks. I had the endoscopy and finally met the doctor and they were responsive to my anxiety and needs to feel safe during that procedure, so that makes me hopeful that they will do the same when I have the colonoscopy next week. I guess all of you are over the feelings about that invasive procedure by now but all that stuff is very hard for me.

I talked to the nurse about the CT scan which did not show Crohn's but she said it might not have shown up anyway because we did not do a prep for it. But she said I have fatty liver disease, and prescribed weight loss, which to a former bulimic who just lost 95 pounds and had to be coaxed into making the appt. because she doesn't want to go on steroids and gain the weight back, that was the wrong thing to say. I also said I don't know what to eat, the low residue diet that I put myself on in the past couple of weeks does seem to be helping some, but I am nervous about deviating so far from the IBS type super fiber diet I had been on. I am afraid of gaining the weight back if I eat those simple carbs and you can't eat JUST fish. Just fish and vegetables and fruit maybe. But now if you take my vegs and fruit away! And then tell me to lose weight! And I am afraid the low-residue diet will just make the constipation really bad over several days, that seems to be the pattern. She also told me the secret was all things in moderation and not to gorge myself. And I wanted to scream. Gorge myself? Really? She told me to eat a little corn but not the whole can. Dude I am not eating corn. I figured out how that hurts. But I would love to eat raw carrots and celery and apples. That is, you know, part of my plan for weight loss! Oh also she told me to eat a low fat diet which pissed me off too. Eating fats has been a good thing for me this year and I have gleefully enjoyed avocados and nuts without guilt. Well, maybe the nuts were a bad idea after all if I do have Crohn's. But so much better way to eat some fats and manage my energy than white crackers that make my blood sugar bounce around.

All in all, the takeaway so far basically feels like "this is your fault and there is nothing wrong with you." I hope the colonoscopy is conclusive one way or another. It is so stressful not knowing what to do and what to eat. I feel like I am doing it wrong no matter what I do.

Thanks, I just need to vent.

I feel like eating a freaking raw apple right now so that it will hurt and I can say, "SEE! there IS a problem! and it is not one that me eating more healthy is going to fix!"

 

[ronroush7]

Sending support.