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Post by willow82 on Dec 5, 2012 21:42:43 GMT -5
I'm into week three of a full force attack, I've been bloated everyday, and while I'm hopeful I'll get better soon since the spotting stopped on Monday, it's still going to be awhile. I've found that spotting at times is worse for me that a regular period, since I'm bleeding daily and it feels like the inflammation just starts feeding on itself. I also have found the longer I was bleeding (regardless of heaviness of flow), the longer it takes my inflammation to improve.
Does this sound familiar to anyone?
My colon is just angry and shut down, and we're doing all this stuff to treat the constipation, treat the pain, and treat obviously the hormones. However, I realized today we're doing nothing to treat the inflammation.
I'm assuming most of you take some form of NSAID?
Do NSAIDs help your inflammation?
I cannot take NSAIDs so I'm thinking I need to talk to my docs about trying something else for inflammation, like maybe steroids?
Anyone try steroids for endo, or notice a benefit with endo when taking steroids for something else?
I'm getting this horrible sense that I'm going to have some bumps in the road to getting my disease under control with hormones, so I'm trying to figure out a way to treat the inflammation.
I'm thinking fixing the inflammation when I have these spells is better than living on laxatives, tylenol, and the occasional narcotic.
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Post by omaklackey on Dec 5, 2012 22:12:26 GMT -5
I have had this same thought many times. I also have to stay away from Ibuprofen. I wonder how effective Predinsone would be. That's what people with RA get on for inflamation... hmm..
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Post by willow82 on Dec 5, 2012 22:34:13 GMT -5
It is also what my boyfriend gets for his Crohn's.
If I am still having issues by tomorrow afternoon I'm gonna call my doctors. I might have my GP do it. My gyn is much more confident in surgery than he is with medications. My PCP will probably think this an awesome experiment. If it happens I will post about it.
Steroids are awful medicines, I have needed them for ear infections in the past and UGGGG they make me all kinds of weird, but it's better than this! I'm just so worried about what this is doing to my body more than anything else.
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Post by semicolon on Dec 6, 2012 7:17:06 GMT -5
On another board there was a discussion about taking Benadryl to help with pain and inflammation which i found interesting I haven't take it in a long time since it makes me sleepy, but maybe i would try before bed this round. Prednisone is nothing to take lightly, it can be very effective but can also mess up your body, check out the possible side effects before taking.
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Post by Karen on Dec 6, 2012 11:11:03 GMT -5
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Post by omaklackey on Dec 6, 2012 14:58:53 GMT -5
I did read the article, and I get a little leery of articles that have listed products in them, but I do agree that inflammation is nature fighting. In the case of chronic inflammation and what we think may be an overactive immune system at work in Endometriosis, I wonder if cutting down that inflammation long enough to allow the body to rest wouldn't be beneficial. And yes prednisone is a gnarly drug. I think we have all said we wish there were other ways to treat endo and so that's why I wonder about drugs to treat the inflammation instead. It would certainly be something done with caution. For one thing, steroids, once started, can be very hard to stop. My professor who taught the section on autoimmune diseases actually has Lupus. She was very open with the fact that her doctors want her off the steroids (prednisone) and how bad it was to be on them full time, and etc. but she flat out said she won't go off them because as long as she is one them she is functioning. Doesn't it make you speculate a little about steroids to reduce inflammation? Its rather pointless speculation as we don't really know that endo is autoimmune but I sometimes wonder. I do know that when I sneak an Ibuprofen in, I feel amazing and I find them more addicting then Narcotics because they actually work. I wish I could take them everyday but its just not safe for my stomach. That is one thing that was mentioned in the article which is very true is the damage those drugs have on liver, and stomach. I have seen what that looks like with my endoscopy pictures, which is why I can't take Ibuprofen. I asked about Celebrex actually but its very expensive and I really couldn't afford to take it. It just further brings up the point that more research is needed. Do you suppose when women finally rule the world we will get that research.... Sorry, couldn't resist.
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Post by willow82 on Dec 6, 2012 18:11:44 GMT -5
omaklackey that was precisely my concern, that when we have changes that cause a brief increase in endometriosis activity it seems like it would make sense to take an action to bring the inflammation down. I am still inflamed in my lower abdomen even though my spotting stopped on Monday.
I know that my breakthrough bleeding on my last BCP is likely what caused my adhesions to get so bad, treating the inflammation would likely have prevented them.
The Benedryl thing is interesting, will ask my doctor about that. I see my doc on Tuesday (if my belly is still a mess).
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Post by willow82 on Dec 12, 2012 3:31:59 GMT -5
My PCP thinks steroids could be a very short term option, at this point it looks like my episode might be dying down so we didn't try it today. However, we're going to try me taking my Reglan (which I'm prescribed for migraines) daily. The hope is that the Reglan may be able to get my digestive tract back in sync.
His theory as to why I continue to have problems is that my intestinal tract gets put out of sync from inflammation, which is why I continue to have problems for weeks. Reglan is supposed to be a good drug for putting things back on track.
When he said "it sounds like your digestion is out of sync" it put words to something I have been trying to describe for weeks.
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Post by omaklackey on Dec 12, 2012 12:30:37 GMT -5
Reglan is an Anti-nausea med but it also moves along the digestive tract. It has some interesting side effects though so watch out for any twitching, jumpy erratic muscle spasms. Also why would you be on Reglan for Migraines? Do you mean you take Reglan to treat the nausea that comes with the migraines?
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Post by Karen on Dec 12, 2012 18:18:16 GMT -5
Consider keeping a food diary - it's most often foods (or endo on the bowels) that actually causes inflammation throughout the body, starting in the digestive system. For me, dairy and citrus are instant inflammation-inducing foods and diary affects me for at least a week or two; wheat tends to kick my butt a few days later, though beer gives me instant joint pain. Nuts do it for me, too. Sounds crazy, I know, but foods that our bodies aren't able to handle (and it's specific to each person) are huge sources of inflammation. See if you can pinpoint what triggers it, assuming the reglan doesn't help and you continue to have issues.
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Post by willow82 on Dec 12, 2012 19:39:05 GMT -5
Reglan can actually be used to treat migraines, primarily the intravenous form as a primary medication. The tablet form is not as effective for migraine but works great for the nausea and I find it amplifies the effectiveness of my other migraine medications. I got on Reglan for migraines after being given IV Relgan in the ER when I had a migraine that had a stroke like onset. Link on Reglan and migraines: somebodyhealme.dianalee.net/2008/03/reglan-plus-analgesic-to-treat-migraine.htmlSince I can't take NSAIDs or Triptans Reglan has been a lifesaver, amazingly I have no side effects, in fact I have no clue how many problems people had with side effects until I looked it up after my doctor's appointment last night LOL, I am such a pharmacological paradox. Took the Reglan last night and actually had a normal bowel movement and my normal time this morning. However, everything digestion related is still EXTREMELY painful. Though getting things back on time would be a major achievement. Karen, my inflammation is all endo related, I have endo in my digestive tract. All of this has been completely related to spotting while on birth control. Just like when I have a period it takes a few days to a week for my bowel to recover, with weeks of breakthrough bleeding it unfortunately takes longer.
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Post by Karen on Dec 12, 2012 22:22:04 GMT -5
I'm not at all implying that it's not endo related, but I'm not making up the part about triggers making things worse. If you can connect the dots a bit more, it's amazing how much progress you can make. A lot of people find this forum through Carolyn's main site, which focuses on the aspects of this disease we can control and learning what works best to help heal the body, so that's why that's one of the messages you'll hear in the forums. In my opinion, it's beneficial to understand what makes a bad thing worse, that's all.
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Post by willow82 on Dec 13, 2012 19:49:13 GMT -5
Actually at this point we're moving to Lupron, unless some miracle happens in the next few weeks.
Something has to happen, I'm finally using the bathroom on time again, but I'm also waking up 2-3 times a night with stomach pain, and shivering and barely able to walk for about an hour after a #2. I'm in mild to moderate pain most of the day, with bouts of severe.
My PCP is concerned that if we don't shut my system down now I'm going to quickly reform all my intestinal adhesions, I'm actually concerned that they're already coming back.
I've spent the day realizing I am indeed in the nightmare.
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