endometriosis and crohn's

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way2tired
Regular Member


Date Joined Nov 2007
Total Posts : 68
   Posted 10/17/2009 10:30 PM (GMT -7)   
  
 
     HI, I was just wondering if any one has both endometriosis and crohn's? Just went to gyn and found out always thought all the pain and bloating was from the crohn's. Now I have no clue which bothers me more its all pain....is this common to have both.

ZenaWP
Veteran Member


Date Joined Aug 2007
Total Posts : 884
   Posted 10/18/2009 5:13 AM (GMT -7)   
I have both (well, had endometriosis, but 2 had two surgeries and I don't think it has come back yet).  That made it very difficult to diagnose my Crohn's, as it was hard to distinguish where exactly the pain was coming from and what was causing it.
Crohn's Disease, Acid Reflux/Gastritis, Hashimoto's Thyroiditis, Endometriosis, Arthritis, Depression/Anxiety.  Too many meds to list them all.  =) 


chrisnsteph1022
Veteran Member


Date Joined Apr 2003
Total Posts : 973
   Posted 10/18/2009 11:05 AM (GMT -7)   
I have both as well. I've had surgery for the endo and am currently on birth control to help control the endo.
Stephanie, 29, married for 10 wonderful years and mommy to two awesome toddlers
dx with Crohn's 4/2003, in remission from 11/2003 to 7/2009
omeprazole 40mg, zoloft 100mg, apriso 1500mg, dicyclomine 3/day
dx with bipolar II 8/2009, re-diagnosed with bipolar I 9/09
Apparently allergic to lamictal...waiting on next rx


flowery
Regular Member


Date Joined Jul 2008
Total Posts : 440
   Posted 10/18/2009 1:30 PM (GMT -7)   
I had both but at the time didn't realize I also was suffering with Crohns. I had a hysterectomy and thought now all the pain would be gone..nope! I didn't heal well and after 8 weeks had a blockage and found out I had Crohns. It is difficult to tell the difference between the pain. Both are in similar areas. Good Luck!
Flowery
 "Get busy living or get busy dying"
               
                         


isergodur
Veteran Member


Date Joined Jan 2009
Total Posts : 831
   Posted 10/18/2009 4:36 PM (GMT -7)   
I have both I got the endo first and the pain from that crap is worse then CD for me :S
Now I take a pill called Cerazette and I never have periods so I dont feel the endo anymore.
My last period was in oct 2007 two years ago and it is great :)

I had surgery in march 2007 to burn the endo away and the started the pill so I have been good since.

when they where dx me with CD I was always double checking that it was really not the endo. But my endo is really great now no problems there wish it was as easy to treat the CD

Good luck
25 year old female
Diagnosed with :
Endometriosis march 2007
Anxiety disorder august 2007
CD/UC they dont know witch October 2008
Autoimmune Hepatitis in July 2009
And now they think I have Lupus :S

Medication - Asacol, Pariet, Cipralex and Cerazette.
Past medication Remicade
My wonderful dogs :) ~ www.poodle.is ~


Sunaddict
Regular Member


Date Joined Jun 2009
Total Posts : 354
   Posted 10/18/2009 4:54 PM (GMT -7)   
I am in the same boat. I always end up in the er when I get my periods. I always figured it was flaring my crohn's up especially with the ulcer because it's where it always hurts and feel neusua. I recently did a scope and my crohn's is not visable. SO the doc may believe it's endo. I'm waiting for a gyno apt (3 month wait) I started my period last night, I was in such horrifing pain, I had no choice to take a gravel and morphine.
all month I was able to eat corn,tomato sauce (things I normaly can't eat) and I've been fine, up to 3 days before my period, it's when I start getting DH.
For those who have both: How long are you allowed to stay on the birth control pill for? do you have children, if not do you want children, and what did the doctor say about having them? see i want kids, but not for another few years. I am worried the doc will tell me to have one now, and then go on with treatment.
I also can't take most birth control due to suffering from migraines (anyone else have this problem?)
Tracy from Montreal,Diagnosed with CD at age 18 but went undiagnosed for 10 years. 17 years with CD, Remicade for 1 year 4 months. Caused remi induced RA, crippled for 8 months
on humira, working for RA but CD is getting worse everyday,been on humira only 4 weeks
Pantasa 8 tabs a day
Provacede 1 daily for the ulcer's
Imuran 1 and half tabs (50mg)
Previous meds: Pantoloc, Predizone, tapered down from 10 pills 8 different times.(horrible side effects),Lots more,list is way to long.
Unable to work last 2 years and counting.Scope says I'm clear of CD,waiting for biopsie. May have Endometrioses, again waiting for another apt.


Dagger
Veteran Member


Date Joined Apr 2008
Total Posts : 1522
   Posted 10/18/2009 6:59 PM (GMT -7)   
There are some fantastic surgeons that can remove the endo. Many docs can remove some of it but the best docs remove all of it, even from places that are considered impossible.

You can stay on BC pills as long as you need to but the migraines may make that impossible. It gets me angry when they make a woman with severe pain wait three months to see a gyn. While you are waiting, find out as much as you can about endo and your gyn. Hysterectomies do not cure endo, if you doc tells you that, find a better doc. Also, meds like Lupron only help for a while, then the pain comes back. Lupron does not always work and has many, many side effects and some are permanent.

Don't have a "diagnostic" lap unless the doc plans to remove any endo while he/she is in there. It doesn't make sense to have surgery to see what is going on then have another surgery later to fix it.

Google the Endometriosis Research Center (ERC) for more information on treatment and to see if there any good docs in your area. Endo can be on your intestines making it impossible to tell if it's the Crohn's or the endo bothering you. If you have surgery, it's best to have a colon surgeon on standby so you can have a resection right then so you only have one surgery.


Good luck

Sunaddict
Regular Member


Date Joined Jun 2009
Total Posts : 354
   Posted 10/18/2009 7:14 PM (GMT -7)   
thank you thank you so so much for all if this wonderful info, I have no idea what I have been doing without guys and this forum (being sick lol)
I will do as much research as the world wide web allows me.
It is horrible waiting so long!!! :( I still have to have another period before I even see her!!
Tracy from Montreal,Diagnosed with CD at age 18 but went undiagnosed for 10 years. 17 years with CD, Remicade for 1 year 4 months. Caused remi induced RA, crippled for 8 months
on humira, working for RA but CD is getting worse everyday,been on humira only 4 weeks
Pantasa 8 tabs a day
Provacede 1 daily for the ulcer's
Imuran 1 and half tabs (50mg)
Previous meds: Pantoloc, Predizone, tapered down from 10 pills 8 different times.(horrible side effects),Lots more,list is way to long.
Unable to work last 2 years and counting.Scope says I'm clear of CD,waiting for biopsie. May have Endometrioses, again waiting for another apt.


jbollinger2005
New Member


Date Joined Mar 2009
Total Posts : 10
   Posted 10/18/2009 8:00 PM (GMT -7)   
I had both endometriosis and crohns at the same time. I had my first child almost 9 years ago and started having trouble after that, then I gave birth too my second and always felt a lot of back pain and cramping so when I was 21 and had my 3rd child I never thought that things could get worse and then of course they did. I went to the doc for a routine checkup and had to be taken into emergency surgery my uterus prolaspsed and I was bleeding to death internally (my uterine vessels had ruptured, was very scary for a 22 year old and things just continued to go down hill. My Mom didnt find out she had health issues until she was 38 well I just turned 25 and found out that I have several immune disorders one of wich was crohns. I had been to the doctor several times before I was pregnant with my first child and they told me ther was nothing wrong now almost 9 years after the fact they diagnose me with crohns in both the left and right colon, but after messing with meds they put me on an immune supressant and let me tell you i feel rejuvinated and am attending college full time and will be done in July of 2010. But I think we have all been down a long rough road and sure hope it will get better for all of us . GOD BLESS U ALL smhair

brit tuck
Regular Member


Date Joined Jun 2007
Total Posts : 143
   Posted 10/19/2009 1:09 AM (GMT -7)   
I also have both Endometriosis and Crohn's. I've had three surgeries for the Endometriosis, with my most recent one being this past July. I had used Lupron for a short amount of time but based on their findings during this most recent surgery they had me go off of it. I'm now waiting *patiently* for my appointment at the Center for Pelvic Pain in AZ because my Mayo surgeon doesn't think my pain anymore is from the Endo and it's not from my Crohn's since it's currently in remission. I do agree with the comment though that you should definitely make sure that whoever is doing your exploratory laparoscopy is capable of removing any endometriosis they found. They were able to do that the first time, but when the pain returned two years later, my original gyno sent me on to Mayo because the surgeons there would be able to do a lot more.

If you have any other questions please let me know. I've been through the ringer on all this, and I'm only 25.

Sunaddict
Regular Member


Date Joined Jun 2009
Total Posts : 354
   Posted 10/19/2009 10:25 AM (GMT -7)   
brit tuck
I happy to hear you did have some sort of time with relief. How is the surgery helping now? I also just turned 25 in July (probably around your surgery time, when I also was in the hospital from a start of my period)
What has the doc say about children? Some people say to except the doc to tell me have a child now, and start treatment, does this sound right? (I'm getting married in 5 months, children right now is not what I want)
Most of all I just need the pain, tiredness to go away!!!
it's funny, I've always had periods like this, I thought it was normal, and going to the hospital thought it was the crohn's flaring, but everytime they took blood test, it came back my crohn's wasn't flared. I would even tell the doc it started with my period. I get "that's odd, I'll send you home and make sure you make an apt for your GI" why has not 1 doc say 'maybe it's endo'
****sigh****
Tracy from Montreal,Diagnosed with CD at age 18 but went undiagnosed for 10 years. 17 years with CD, Remicade for 1 year 4 months. Caused remi induced RA, crippled for 8 months
on humira, working for RA but CD is getting worse everyday,been on humira only 4 weeks
Pantasa 8 tabs a day
Provacede 1 daily for the ulcer's
Imuran 1 and half tabs (50mg)
Previous meds: Pantoloc, Predizone, tapered down from 10 pills 8 different times.(horrible side effects),Lots more,list is way to long.
Unable to work last 2 years and counting.Scope says I'm clear of CD,waiting for biopsie. May have Endometrioses, again waiting for another apt.


brit tuck
Regular Member


Date Joined Jun 2007
Total Posts : 143
   Posted 10/19/2009 10:11 PM (GMT -7)   
Tracy, based on your earlier comment it appears you haven't had any laparoscopies done to confirm the endometriosis. Is that correct? The pregnancy thing depends on a lot of factors. Endometriosis does tend to make it harder to get pregnant. I've also heard that it tends to be a time period when you're virtually pain free because you of course don't have your period. But it's not like it's a reset button necessarily.

The surgery this time didn't help at all because they didn't find any more endometriosis this time. Just some cysts and scar tissue, amongst other things. This is the first time though that I've found out that my left ovary is apparently no longer working. I'm not surprised though. That's the reason I have my new appointment scheduled for February with the Pelvic Pain Center. They want to determine if something else is going on.

I think that you will have a lot of questions to go through with your gyno when you meet with them. Part of the problem is endometriosis is similar to Crohn's in the diagnosis problem i.e. you end up usually figuring out what things it's not before you get a clear diagnosis. And a lot of the Crohn's symptoms tend to overlap with the pain caused by endometriosis. So if a doctor in the ER knows you have Crohn's they probably wouldn't even think to assume you might have endometriosis as well.

Some potential treatment options for you are: birth control, different medications like depo lupron, and a laparoscopy. I've been on birth control since I was 15. I don't believe there's any huge risk out there for being on it for this long, but of course, I am not a doctor so you should check on this. Going on something like lupron would really only happen if the birth control has not helped at all. And a laparoscopy is a real surgery with real required recovery time, especially depending on what they find. But they never had a real diagnosis until I was 19 and they did my first laparoscopy.

Again, let me know if there's anything else I can answer. Sorry if this was a bit rambling.

way2tired
Regular Member


Date Joined Nov 2007
Total Posts : 68
   Posted 10/20/2009 7:10 AM (GMT -7)   
 
 
    I just want to thank everyone for answering me this has been helpful, I'm trying to figure out what all this is and what comes next....I have my gyn appt tomorrow to see what we are going to do also have my colonoscopy too....lol one in the morning and one in the afternoon...not a fun day....thanks again
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