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"Pneumatosis Coli"--or could this be endo again...having colon problems! "Pneumatosis Coli"--or could this be endo again...having colon problems!

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Unread 08-23-2005, 11:02 PM
"Pneumatosis Coli"--or could this be endo again...having colon problems!

Hi ladies..
I have a quick question if anyone might be able to help or know of a website that would help. I have been researching but it is hard to find out much on this subject.
Last weekend I was in the ER with severe abdominal pain. They took x-rays, and called me later. The doctors seems to think I have a problem in my colon that is rare...called pneumatosis coli. I have been having pain in my right side...which is where all the endo began several years ago.
I am going next Friday to a specialist and will probably be having a colonoscopy done. I cannot help but wonder if the endometriosis is rearing its ugly head again?
I'm trying to find out what I can, so any info that you all might have would be appreciated.
Thanks very much!!
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Unread 08-24-2005, 09:26 AM
"Pneumatosis Coli"--or could this be endo again...having colon problems!

I am with you on this one. I had my Hysterectomy 15 mos ago but it did not help the pain. I am now on pain management. Because of the narcotics I am always constipated for long periods of time. I attempted to have a Colonoscopy twice but was unable to clean out my bowels for the procedure. I struggle constantly with the severe pain and constipation. I think that my Endo is flaring again because my Doc left some Endo in my bowels and on my ureters when I had my Hyst. I feel that it has grown again but unfortunately my husband (US Coast Guard) and I are stationed in Al, where the health care *****. Please let me know how you continue to dow ith this. You are in my thought and prayers.
Unread 08-24-2005, 10:30 AM
"Pneumatosis Coli"--or could this be endo again...having colon problems!

Thank you Kelly. My gyn did not do surgery on my colon or intestines; but the endo had spread within one year to my only remaining ovary; my uterus was being "glued" to the pelvic wall and was infected in the lining because of the endo...I forget what that is called. And the endo had spread up into my appendix, and was "glueing" it together, which is why so much stuff was removed at one time.
I have had this pain off and on ever since the surgery. It seems to be worse when I increase the dose of Estratest that I'm taking. And it was better when I was taking the progesterone pills. But my dr didn't want me to take the pills anymore (progesterone) after all that stuff came out about the risks of combined HRT ( So I just started using the compounded progesterone cream.
But anyway, on purpose I did not go back to the gyn because I was afraid he would want me to go thru all of these tests and maybe talk about surgery again. Wouldn't you know...guess it caught up with me. LOL. I have been taking narcotic pain meds because of complications from having a tooth pulled. That along with a whole bunch of stress just compounded my problem. So I ended up in the ER a few weeks ago.
Thanks for posting....and for your prayers. I am looking through hystersisters website...once again!!!....for some answers. As I have said so many times, thank the Lord for Hystersisters!!
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Unread 08-24-2005, 04:28 PM
"Pneumatosis Coli"--or could this be endo again...having colon problems!

Hi Ladies,
I just wanted to let you both know that endo does return!!! Ask me how I know? Its ME!!! I was suffering from lower right pain, so I saw my doc. had to have another lap. 4wks ago, and now I have been diagnosed with ORS(ovarian remnant syndrome).No fun at all. I know exactly how you feel, especially after going through our hyst. thinking everything was going to be so much better. What ever you decide to do please don't discount your pain...seek help, don't just live with it!! I wish you both the best!!

Unread 08-24-2005, 07:33 PM
"Pneumatosis Coli"--or could this be endo again...having colon problems!

Hi Mel..
Thanks for your encouragement and support. After reading a lot on this website I realize that endo that has not been completely surgically removed can still cause you problems even if both ovaries are gone, especially if you are on HRT. And I found a few articles on the internet that either linked pneumatosis coli to endometriosis, or some of them said that one mimicked the other. If I can help it I do not want any more surgeries....however you are right, Mel, it is not fun to live with the pain either! I have pain a lot in my lower right abdominal area, sometimes in the left, and sometimes needle like pain in the middle, below the belly button. I have a lot of lower back pain off and on, but have never quite figured out what is causing it.
Hopefully I will get some answers soon!
Thanks again....
Unread 08-24-2005, 07:41 PM
"Pneumatosis Coli"--or could this be endo again...having colon problems!

Hey there,
I was wondering if you would send me some of the links you came accross.
Unread 08-25-2005, 05:43 AM
"Pneumatosis Coli"--or could this be endo again...having colon problems!

Hi Kelly-
Here is the link on this website called "The Road Less Travelled--Endo & Adeno": https://www.hystersisters.com/vb2/lin...o=browse&cid=6

This was the most helpful and is filled with all kinds of articles that are found on the web. I wish I had read some of this stuff about 6 years ago!

Unread 09-23-2005, 04:57 AM

Hi Ladies,
Well, here is the update. I had a colonoscopy; everything was fine, NO pneumatosis coli. He found a lot of scar tissue and endometriosis adhesions way up inside the colon. Which explains the pain in my lower belly (right side) that I've had for the last 4 years that has increasingly got worse. And explains the increasing problems with constipation. Here is a tip....he told me to take 1- 2 tsp of Milk of Magnesia every night to help with that. I feel so much better in that regard!

Then I had a CT scan. Everything seemed okay there. Yesterday I had a gallbladder ultrasound. They want me to come back for one more "picture" of my liver, I think, this morning. Oh joy!

I made an appointment and saw my gyn two days ago, he is the one who did the original surgeries. I think he believes that endometriosis is causing all of the abdominal pain, from my rib cage, down my side, into my right lower abdomen. He talked about Lupron shots for two months and going off the HRT's to see if the pain goes away....and that would confirm the endo.

But I am VERY AFRAID of doing that! It has taken me five years to get to this point of feeling good emotionally...I still take meds for depression/panic disorder. I am very much concerned that the Lupron shot, etc would upset the chemical balance again.

I am supposed to go back next week to see the gastroentologist, and then see my gyn in another 2 weeks. This pain feels very familiar and is in weird places. If they do Lupron, and discover the pain goes away, wouldn't they schedule a lap anyway? I think I am going to talk to him about my concerns and ask him if we couldn't just go ahead with a laproscopy, because the pain feels just like it did 5 years ago.

That's the update...I can see by reading on this message board..there are a lot of women who have had endo pop up again! I thought I had gall stones, but maybe the endo has got up there, too? It was on my appendix and they had to take it out when they did the hyst.

Thanks for listening....if anybody could give their viewpoint on the Lupron thing I'd appreciate it.

God bless...
Unread 09-23-2005, 07:35 AM
"Pneumatosis Coli"--or could this be endo again...having colon problems!


I also did 3months of lupron before my hyst. My experience was not a very good one, everyone responds to this shot differently. I had very bad meno signs,night sweats, hot flashes and very very moody. I really couldn't handle it. But I have heard of others who do really well on the shot and became pain free! So who knows? Do what you think is best for you, you know your body more than anyone! I know it is a difficult decision to make, I have been there!

Wishing you the best on your decision. Sending you many
's and 's!!!!

Unread 09-23-2005, 08:34 AM
"Pneumatosis Coli"--or could this be endo again...having colon problems!

Thank you Mel, I really appreciate it. I have always been so sensitive to medication. When I was in my 20's I couldn't even take birth control pills. And after the hysterectomy it took me 2 yrs to find an HRT regimen that worked. So I guess that is why I am very concerned about the Lupron shots. PLUS he told me I would have to stop taking the HRT, too! So I really need wisdom about what to do.
Thanks again..
God bless.

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