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9 weeks post op, no closer to an answer.

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Crohn's Disease
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Posted 5/6/2011 9:50 PM (GMT 0)
I am 9 weeks post op today and I am right back to where I was 13 weeks ago when this episode started. At this point, my surgeon and GI are both stumped. I had an endoscopy this afternoon to make sure there was nothing going on in the upper end. It showed nothing. I have a lab slip with just about every test possible ordered, including lyme, just to be safe. I am still waiting to hear back from the specialist in Boston to see if they can book me in for an emergency consult appointment. I saw the pain clinic at my hospital on Wednesday and they have nothing to offer because they really only treat back injuries and some incision pain. They did RX a TENS unit, which I will get next week, but I doubt that is going to help since I am pretty sure I am having either temporary blockages or ileus.

Needless to say, I am done with this. I am only able to tolerate liquids, some noodles, mashed potato, eggs and fish. Even those hurt. If I venture toward anything else the pain is incredible. I can no longer take Ensure, so I don't really know what to do to try to get extra nutrients into me. Some days the nausea is back, but most of the time I can keep it at bay. I have been able to stop the weight loss now, but I am starting to lose my appetite again, so it is only a matter of time before the weight starts falling off again. I don't have that much more to give.

Not really a vent, because I know there are ebbs and flows and eventually my doctors will either figure this out or it will pass on its own. Just wanted to post an update.
Posted 5/6/2011 9:58 PM (GMT 0)
Oh boy, Zanne, that is horrible.
I hope the specialist will have the answer and get you better fast.
Hugs!
Posted 5/6/2011 11:41 PM (GMT 0)
My GI is hoping that a fresh set of eyes sees something that he has missed or just has a new point of view. Pretty sure I will end up with a colonoscopy in the near future. When I was having gastritis issues a few years back, I went through a similar thing. I saw several GI's, was in multiple hospitals, both local and in the city, had C-scopes and Endoscopies just about every other week and so many other tests I can't even remember. Over 10 hospital admissions in 6 months and lost 60 pounds. No one could figure out why I was having gastritis episodes. They could verify they were happening and eventually they just basically stopped. I do still have some symptoms but I am pretty good at recognizing when it is starting and if I stop eating for a few days, it clears up.

I hope this isn't similar and that they eventually find an answer. But I have lived with this disease for 45 years and I know that things will get better, its just sometimes hard to live through it when its bad. In the grand scheme of my life its been 3 months, just a blip, but man it feels like an eternity right now! I have things to do, and I have no energy to do them!!! mad
Posted 5/6/2011 11:51 PM (GMT 0)
hey zanne, sorry to hear of these issue's. but what is gastritis? I'm having problems, eating is a chore, never comfortable after I eat, doesn't matter what it is.

AG
Posted 5/7/2011 12:00 AM (GMT 0)
Hi Zanne,
Sorry you are having a rough period. I do hope a fresh set of eyes sees something to help bring some relief. *Hugs*
Posted 5/7/2011 12:02 AM (GMT 0)
AG - Gastritis is inflammation of the stomach.

Zanne - I am so, so sorry you are having to deal with this. When I was initially diagnosed, I had severe gastritis. The pain if I ate was so bad, I too stopped eating. When I had an upper endoscopy, they found many, many areas where my stomach lining was super inflammed and had recently bled. I was lucky that the scope was 2 days after a particularly bad couple days of stomach pain. The biopsies didn't show granulomas and the pathologist wrote given my history, he suspected Crohn's. My GI told me he had seen this several times in patients with CD in the TI. He said it was a type of backwash.

Zanne, I hope fresh eyes and perspective can find some answers to get you back on the road to health. You have really been through hell. Thinking of you....
Posted 5/7/2011 12:22 AM (GMT 0)
Zanne,I wanted to suggest another product that you might tolerate better than Ensure. It's called Boost Breeze, and while it contains 250 calories, it has no milk or fat. It could help tide you over until you can see the next doc.

I'm so sorry you're having such an ordeal. I've had three resections and have been dreading the possibility of another one. My last one was very difficult because adhesions had matted healthy intestines into a mass and it took hours for the surgeon to peel them away. But I did recover after a long while, and that was 16 years ago.

Many good wishes for some good luck--it's about time.
Moodindigo

http://www.walgreens.com/store/c/resource-breeze-fruit-beverage/id=prod4277183-product
Posted 5/7/2011 12:54 AM (GMT 0)
I'm sorry you're in so much strife, Zanne, and don't blame you for feeling tired and fed up.

Has your doctor considered putting you on TPN, just to give your gut a break and to give you a rest from the stress and pain that comes with eating?

Apart from anything else, you don't want to develop malnutrition, because things become even more complicated then :-(.

Hang in there.

Ivy.
Posted 5/7/2011 1:25 AM (GMT 0)
Oh Zanne I'm sending all my positive thoughts and hugs to you! We are lucky to live in a area that has some of the best medical places!

Thinking about you!
Posted 5/7/2011 2:43 AM (GMT 0)
You poor girl!! I really don't have much to add, except I'm thinking of you! ((((hugs))))
Posted 5/7/2011 9:53 AM (GMT 0)
I agree w/Ivy - ask to be put on TPN and give that digestive tract a chance to REST and hopefully HEAL. (((hugs))) This stuff really wears thin in a hurry, doesn't it?? *sigh*
Posted 5/7/2011 11:30 AM (GMT 0)
I will check out the Boost Breeze. I haven't seen it on the shelves, or maybe I hadn't noticed it. There was one drink they gave me in the hospital a while back, but it was called something else. I know the dietitian said it had to be ordered from the food services dept.

TPN has not been discussed. Like a lot of us, I try to keep a "buffer zone" of weight on. Not that I was over weight, but I was at the top of my BMI. So in the doctor's eyes I haven't gone to an extreme low weight. I had a few pounds to give, and still do before I look seriously skinny. I am not happy at this weight because I think at my age you need a little fullness. If I were in my early twenties I would be just fine here.

When I was having the gastritis, they took biopsies and none came back that it was CD, is that what you meant Ides?

Moodingo, I had no trouble recovering from my first 3 resections, and actually my incision is nicely healed, just a twinge now and then. I had a ton of adhesions that the surgeon removed. I am hesitant to post because I don't want to scare others away from much needed surgery. Out of 4, only one has caused problems, and I tend to be the odd case any way. Plus this seems to be not surgery related so much as, they didn't fix the original problem. There was a small narrowing they took out, but I now suspect that the narrowing was not causing the issues.
Posted 5/7/2011 3:18 PM (GMT 0)
Oh dear!! Zanne this is not good. Souds like its not Crohns related, but more something surgically related. I think maybe the TPN might be a good idea to allow your insides to rest and heal. So so sorry you are suffering still. Hugs!
Posted 5/7/2011 5:33 PM (GMT 0)
Im so sorry that you are sufferring so much Zanne, I hope you find some answers and something to ease the pain soon (((hugs)))
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