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I've had enough; going to see a surgeon

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Crohn's Disease
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Posted 9/10/2010 12:26 AM (GMT 0)
Well, that's it for me. I've had enough years and years of suffering since my last resection. I'm now having obstructions pretty much daily, so my GI is sending me to a surgeon. I'm pretty sure a stricture is causing most of my suffering right now.
I hope I will get surgery ASAP.
Posted 9/10/2010 1:07 AM (GMT 0)
When was your last resection Roni?
Posted 9/10/2010 1:24 AM (GMT 0)
I had my first resection 5 years ago. I was having obstructions then too. I suffered non-stop before and non-stop after because the CD recurred immediately.

I've been sick for over 13 years. I'm a young mom and I want to have a chance at remission so I can have a better life with my kids and husband.

My plan is to have the resection and start all over again with fresh treatment, hopefully with a better outcome: go on meds right away this time (pentasa and whatever else the doc says), stay on probiotics, digestive enzymes, eat a healthy diet as natural as possible.

If anyone has any suggestions/tips on how I can stay in remission after surgery, please let me know.
Posted 9/10/2010 2:17 AM (GMT 0)
(((Roni)))

Wishing you speedy relief and a long remission.
Posted 9/10/2010 4:05 AM (GMT 0)
Roni, I stayed on SCD after my surgery last September. I also take Pentasa and LDN. My guts are still in good shape, and I haven't been on a biologic for a year. I've even been able to eat some raw fruits and veggies this summer. I need to get a colonoscopy this fall, so that will show for certain whether I'm in remission. I think I am, the only real symptom I have is fatigue, and that could be due to something else (like my thyroid).

Good luck, I hope you can get scheduled for surgery soon! It's such a relief to not have to deal with obstructions anymore.
Posted 9/10/2010 2:47 PM (GMT 0)
Ah sorry to hear that Roni. I was told after my first resection that I no longer needed meds. BIG MISTAKE!! I ended up having a repeat resection only 3 years later. So do get back on your meds and diet this time, so you can fully enjoy life and your little one. Hugs!
Posted 9/10/2010 4:00 PM (GMT 0)
I'm so sorry - I fear I'll be in the same position in a few years. My first resection was in Feb and my remission lasted 34 days. I was barely eating anything before the disease started manifesting itself so I know it wasn't due to diet.

I think sometimes this disease is a crapshoot. You can take the meds, eat the right things, lower your stress level, etc and still end up struggling on a regular basis.

I hope you can get it scheduled soon and start the healing process.
Posted 9/10/2010 4:03 PM (GMT 0)
After my first resection, I went back on pentasa, but maybe imuran would have been a good idea too. I didn't start probiotics, digestive enyzmes or an easy to digest diet until about 1-2 years after my resection, by then I was full blown obstructed again. I found the probiotics enzymes and diet helped and for some people it might be enough to induce remission, but I think it was probably too late to stop my disease altogether.
Still it was worth a shot to try to avoid surgery again, but I've had enough. I'm gonna start all over and get the natural and conventional treatment going right away after surgery.
Posted 9/10/2010 7:56 PM (GMT 0)
You know, you would think they could do something like stints to force the narrowing open rather than just cut sections out.  Just a wild thought I had.  I wish you luck.
Posted 9/11/2010 3:44 PM (GMT 0)
The radiologists think I have inflammation as well, so I just want them to take this CD out of me. I only have about 3 inches or so of acute CD and stricture. Last time it was 10-12 inches of CD with a stricture. I have been trying for 5 years to get this recurring cd under control and nothing has put me in remission. This time will be different hopefully because I have a better plan in place. We'll see.

Post Edited (Roni) : 9/11/2010 10:03:57 AM (GMT-6)

Posted 9/13/2010 11:45 PM (GMT 0)
spookyhurst, its interesting to see you are mixing LDN with another med...why the combo?

 

Posted 9/13/2010 11:47 PM (GMT 0)
Roni, which meds have you tried in the past years?
Posted 9/14/2010 12:20 AM (GMT 0)
prednisone, entocort, IV steroids, imuran, remicade class drugs (can't take cause of a heart problem now), pentasa, maker's diet (which did help, but not enough because I think part of my problem is a stricture), probiotics, digestive enzymes, other natural remedies, a resection, and I can't remember what else.

I really need to get this stricture taken care of, then I'll start all over with fresh treatment that will hopefully help this time.
Posted 9/14/2010 12:29 AM (GMT 0)
I was undiagnosed for 10 years and the damage was severe. It took another 10 years and 3 resections to undue. I had symptoms within 6 weeks of one of my resections. I think that the surgeons are so concerned with leaving as much bowel as possible that some microscopic disease can be left behind. If you aren't on the right medicine, or combo, immediately following surgery, then it gives that little bugger a chance to take hold.

So far things have been pretty calm once I got the "bad" stuff out and got on the right medication. I hope it works for you and you can get back to living life.
Posted 9/14/2010 4:22 AM (GMT 0)
Roni, I take the Pentasa to pacify my GI, and as a backup to SCD and LDN. She's upset that I quit Humira, but I've been off it for a year with no problem. She doesn't know I'm on LDN. She was against it, so I just didn't tell her. It definitely helps though, because my energy level tanks when I don't take it. My body misses the endorphins!
Posted 9/14/2010 4:54 AM (GMT 0)
Roni, good luck! Looks like you've run the gamut of diet and meds - I'm hoping the surgery will dramatically improve your quality of life!

Spookyhurst - do you have blood tests to check CRP, sed rate, and vitamin D 1, 25? The reason I included the vitamin D 1,25 is because when D 1,25 is above normal, it can point to inflammation.

Posted 9/14/2010 5:11 AM (GMT 0)
Not recently njmom. I'll ask my GI when I see her next month. I had a vitamin D 25 test done recently. It was 50, which I believe was right in the middle of the range.
Posted 9/14/2010 7:14 PM (GMT 0)
THere are two different vitamin D tests. One is vitamin D hydroxy, the storage vit D, and the other is vitamin D 1, 25, the active vit D. Crohn's patients tend to be deficient in the storage D, and too high in the active vit D. So both vitamin D tests need to be done. A result of 50 would be pretty good for the vitamin D 25 hyroxy, and is OK and well within the normal range for vitamin D 1, 25. But you do need to know which was which - my guess is only one form of vit D was checked.  
Posted 9/14/2010 10:43 PM (GMT 0)
Yes, the 50 was for the D 25 hydroxy.

I'll be sure to ask my GI for all of these "inflammation" tests. Sounds like a good way to keep an eye on things. Thanks!
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