It feels like quitting time

[Keralin]

I was diagnosed with Crohn's in August after being ill for almost three years, but when Asacol and Entocort failed to remedy my symptoms, there was serious doubt it was actually Crohn's we were dealing with. Now my primary GI doc is back to saying maybe it's mild Crohn's, but there has to be something else going on. The other one still says no, and a third one who was brought in to do a balloon enteroscopy thinks it is Crohn's and that I may possibly need surgery to remove a section of my colon that keeps getting inflamed. All I know is I'm trying my hardest to put some weight back on, despite the ridiculous amount of pain and nausea I'm having, and I'm still being accused of having an eating disorder. My husband almost punched the doctor today, but didn't. He couldn't, however, keep himself from yelling at him. "IT'S NOT AN EATING DISORDER".

Today was supposed to be the day that everyone came to an agreement on Crohn's or no Crohn's and put me on the appropriate medication so I can finally get some relief. Instead, they want me to stay off everything for a few months so they can do another deep small bowel endoscopy in the hopes of finding what originally lead to diagnosis in the first place, by way of pillcam, but this time with biopsy evidence.

Even though my nutrient intake is far greater than it was a couple of months ago, my lab results are continuing to go down the tubes. There are things that I find to be alarming, that are being shrugged off as 'eh, whatever, crazy woman'. Shouldn't a person be concerned when they have bloody bm's and pain that keeps them awake at night? I sort of think it should be a pre-requisite that all GI doctors also have some sort of serious digestive problem so they can show a little more empathy. I swear, they're the most sadistic bunch of pr*cks I've encountered in medicine.

I'm so tired. I'm tired of people telling me how I should feel based on some random number from some random lab test. I'm tired of being accused of somehow being the cause of my illness. I'm tired of defending myself at every appointment I have. I'm tired of not getting answers. I'm tired of putting my life on hold so they can run their tests. I'm tired of being tired. I just want to give up.

 

[afidz]

I am so sorry to hear that you are being treated so poorly. If I were in your shoes, I would consider finding a whole new doctor completely.
Asacol, although it can help with Cronhn's, is not meant for Crohn's. It is meant for ulcerative colitis.
The difference between UC and Crohn's is that while UC only affects the top layer of the intestinal wall, Crohn's affects all of the layers. Asacol only treats the top layer of the intestinal wall. A lot of doctors do prescribe Asacol to Crohn's patients, but they prescribe it in-conjunction with other meds.
I don't know very much about Entocort, I have never been on it. But from what I do understand (and someone correct me if I am wrong) is that it is a milder steroid. SO if you have a lot of inflammation in your intestines, it may not be helping as much as a stronger steroid (like prednisone) would.
I don't agree with your doctors advice on taking you off of everything. To me, its saying "I am going to take you off all meds so that you can get bad enough for a clear diagnosis, despite the damage that may be done"
What tests have been done so far? I know you mentioned bad blood tests, do you know what numbers are bad?

 

[Jennifer]

Hi Keralin, I'm sorry you're going through this. :hug:

Entocort is absorbed in the terminal ileum and ascending colon so if the inflammation you have is in another portion of your colon then it wont do anything at all. As mentioned above, Asacol is topical and not the best for treating Crohn's disease.

I hate it when doctors want to take people off all medication just to see what happens. My GI doctors never did that and I honestly don't think they ever would. If possible, please look around in your area (even if its hours away) and see if you can see a better GI. My first GI was 4 hours away and my current one is in another county (only a 30-40 min drive so not too bad). Another colonoscopy WITH biopsies (dunno why none were taken before, what was the point in doing such an invasive procedure and not get any biopsies?) is usually a must for a Crohn's diagnosis but I don't see the point in waiting 3 months or more. Hopefully you can find a new GI who is willing to listen to you and give you the proper care you need and do a scope sooner (with biopsies) rather than later because you clearly need treatment soon.

If you start passing a lot of blood, have extreme pain and/or if you can't even hold down liquids (or if your vomit is a dark green or bright yellow) then please go to the ER. http://www.crohnsforum.com/showthread.php?t=55447 Hope you feel better soon, keep us posted.

Edit: Since you're still having pain along with blood loss what you could do is go on a liquid diet (bowel/gut rest) to help reduce the inflammation and symptoms. Adding supplement drinks like Ensure Clear and making your own soups and only drinking the broth will help give you nutrients you need along with lots of water and other liquids to help keep you hydrated. Always inform your doctor that you're doing this as they can help (for now you can let your current GI know but I still hope that you find a better one soon).

 

[Keralin]

It was just last week that I joked with my primary doctor that I think they enjoy torturing me, because it has been one thing after another for almost a year now.

To start, they thought I had celiac disease, but that all came back negative. Then I had a colonoscopy, which was also negative for anything significant...just a little colitis. All of my labs came back fine, even though I felt like complete doo-doo from the very beginning. When I had the pillcam, that's when a dozen or more ulcers were found in the ileum. He ran the promemthius ibd serology test, which came back positive for IBD but was more consistent with UC than Crohn's. He tried me on Asacol first, and no apparent improvement. Then he put me on Entocort and sent me for a CT enterography with no significant findings. Labs came back normal once again. Entocort (yes, it is a very mild steroid) relieved some of the pain, but I actually lost more weight and started refunding most of what I was eating.

I was referred to a tertiary center because I left the main dude scratching his head. I had another colonoscopy and endoscopy, both of which were fine. Weird little bits of information rolled in as my doctors were having random blood tests done. Vitamin D was high, I don't supplement. Vitamin B12 was very high, which I also don't supplement, and I'm also vegetarian so it makes no sense. Both of those contradict Crohn's. My dietitian seemed to think that they indicated decreased liver clearance, or my renal functioning was compromised. When I told my primary doc about that, she got angry and said "she's not a doctor and she shouldn't be telling people stuff like that, it'll just turn them into anxious basketcases!". And then she proceeded to go off on the whole schpeal of how even though a certain lab tests fall out of reference range, they look at the big picture to decide whether or not it's something worth looking into

I was told to discontinue entocort to see if they couldn't find something with a balloon enteroscopy. They were unable to find any signs of disease 3 feet into the ileum, but the area that had colitis in my first scope flared up 10 times worse than it was initially. Ulcers, bleeding, the whole bit. Then I had an MRI which also came back unremarkable, save for kidney cysts and a little clinically insignificant inflammation at the very end of the TI.

I went to see my primary doctor because I had a scary episode of ascites/edema that seemed to come out of nowhere. She had some labs drawn, and those showed that I'm anemic, have elevated liver enzymes, low TSH (she's thinking hyperthyroidism?), and low blood glucose (I was pretty sure I was having bouts of hypoglycemia before that was confirmed). I've been telling all of them from the beginning that I think we're dealing with two entirely different beasts, not just one unifying diagnosis. Maybe I DO have mild Crohn's, and some other weird issue that's funking up my recovery. Either way, I'm the patient so being the under-educated cretin that I am, they don't take me seriously.

I had 5 cases of peptamen 1.5 sitting in my kitchen. I made it through one case before I started dreading drinking any more of it. I was drinking it in addition to solids, so I may try a liquid diet for a week or so to see how it goes...if I have the willpower. If I could make it into ice cream somehow, I'm sure I'd have no problem with it:ylol:

 

[DJW]

Sending you my support and best wishes. You are in a terrible place right now. Hang in there. It took a long time for me to get better (12 years) and wanted to give up many times. But I did get my life back. I pray the same for you.

 

[Andy357]

I cannot believe you have been treated this way by that doctor. Your husband is certainly a much bigger man than I am, I would have sent my chair flying at him lol. When in a flare up, the very thought of eating would make me physically sick, so your position is completely understandable.

Please hold on, all my hopes and prayers are with you in your time of need

 

[Keralin]

So, I had planned to call my doctor Friday morning to apologize for the heated and long conversation we had Thursday at my appointment, but decided I was still too angry with him and couldn't bring myself to dial the number. He actually called me later that afternoon to apologize, ha! I was on the phone with him for about a half hour, after spending nearly and hour and a half at his office the day before. Yikes. At least he cares, right?

He took the time to go over notes from my gp, other gi doc, and all of the tests I've had done. He wasn't frustrated with me, he's frustrated that this case is an extremely difficult one and he wants to see me get better 6 months ago. He realizes how miserable I am, and feels helpless to do anything about it. He offered ultram for pain, but the pharmacist advised against it given the circumstances, so I guess it was a nice thought at least. He also said if I can hold out for another few weeks, he's sure we're right on the cusp of figuring out exactly what is going on with me. He's still pretty sure I have Crohn's, but until we're sure something else isn't going on, he doesn't want to put me back on steroids to miss a possible secondary diagnosis.

Until that time comes, I just have to keep putting one foot in front of the other. I appreciate all of the kind words from everyone, and am so grateful for all of the support, especially from people who know what it's like! :ghug: