Crohn's and Endometriosis

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brit tuck
Regular Member


Date Joined Jun 2007
Total Posts : 143
   Posted 10/8/2008 2:50 AM (GMT -6)   
Hi guys. So I remember reading a while back that there are actually a bunch of other women on here that have Endometriosis as well as Crohn's. So I guess this is more directed at them, because I'm trying to figure out where to go from here. I've pretty much been keeping my treatments separate (in decision making terms), even though both doctor's definitely know about the issues being covered by the other one. But I feel like I'm at a point where I'm not sure what to do, because I feel like one of my medical choices for treating the Endometriosis is definitely going to impact my Crohn's treatment.

So I'm currently on Entocort (9 mg), Bentyl, Imipramine, and a monthly B12 injection for the Crohn's. I tried Pentasa.. did nothing. I tried 6 MP, made me too sick. I attempted my second capsule recently, but it only recorded my stomach. So I'm getting another one set up that will be placed via an endoscope. Once that's done, my GI is going to go from there to figure out what medication I need to be on, since we want to get me off the Entocort. I've been on Entocort for almost 2 years now, and I already know that it's causing some issues with my bone density. This is where the issues with my Endometriosis treatment comes in...

I've had two laparoscopies for my Endometriosis.. and both times they cleared a lot of endometrial growth out. Last time they even took out my appendix because it was covered. But the birth control I've been taking hasn't really changed the pain I feel, and it's now more than just when I have my period. It honestly feels like I'm being stabbed, and it goes up into my abdomen. That's part of the problem, because I'm not sure if it's pain from the endometriosis or from my Crohn's. I recently met with my doctor, and her two suggestions for treatment were: (1) Depo Lupron or (2) another laparoscopy. The problem with Depo Lupron is that it not only tricks your body into early menopause, but it can cause serious problems with bone density (which I already have issues with). Keep in mind that I'm only 24.. not a great time to have early menopause. The issue with the second option (laparoscopy) is that it's a surgery - and that there are always possible complications with surgery. Plus, it seems a little ridiculous to have surgery every two years or so just to keep the pain under control.

So my question is what do you guys think? Should I wait until I'm off the Entocort before I start trying something else that causes bone density loss? Or should I just kind of tough out the pain? I've technically done that for years.. ha. Regardless, I'm meeting with the surgeon I had last time to talk about a possible surgery - and the earliest it would be is over winter break because of school.

Thanks in advance for reading this!

HabsHockeyFan
Veteran Member


Date Joined Jan 2006
Total Posts : 2855
   Posted 10/8/2008 7:31 AM (GMT -6)   
Hey brit...I don't have endometriosis, but my sis with UC was a severe case. She managed to avoid surgery long enough to have twins, then had major surgery.
I do know about the depo lupron injection as I had that. I hated it! It caused extreme weight gain and I was miserabley moody on it. I just felt really crummy and I think it made me more depressed too. I didn't even know about the bone density issues, but I have been very fortunate there.
I can't say I recommend depo. I wish I could offer more for you as I empathize with your tough decision.
Dx'd '90 (emergency rupture), symptoms ignored long before that, '03 fistulas and bad flagyl reactions, B12 weekly, Pentasa [until I surrender to the bigger meds]
I'm riding on the escalator of life....


Den48
New Member


Date Joined Oct 2008
Total Posts : 1
   Posted 10/8/2008 9:59 PM (GMT -6)   
Hello Brittuck
 
I just joined this forum 10/08/08 and wanted to address your posting. I have endometriosis (diagnosed back in 1991 with a laparoscopy) and most recently besides IBS they are thinking I have Crohns as well. I have always had stomach issues but since 2005 they have gotten worse. My primary docs have had me on the standard GERD type drugs and even Levsin for IBS when needed, but the tenderness and pain all on the outside of my intestines has grown worse, also the swelling up, usually near my ovulation time, which I have started charting.
 
My GYN wants to try the Lupron shot next on me because she thinks that due to all of the abdominal pain that I have, that I now have endo stage 4 where the lesions are on the outside of my intestines and the culprit of all of my abdominal issues. She doesnt want to do the laparoscopy she wants to give me the Lupron shot for 3 to 6 months to shut things down and see if that changes my abdominal pain and pressure. Then she can use that as a diagnostic tool and then if the pain returns when Lupron stops she knows a hysterectomy is probably next. I told her I'd rather do the scope and if she sees things need to come out, just do it. I dont know, she seems fixated on this Lupron thing first.  My regular/primary doc was very concerned about the recent swelling and ordered a cat scan, which showed a supposed lesion in the rectum area. I just recently had a colonoscopy this week but the lesion they saw on a cat scan, wasn't there when the gastro doctor did the scope, just Grade 1 internal hemmorhoids whatever the heck that really means. So perhaps that looked similiar to a lesion on a cat scan, I don't know. 
 
My reason for writing you - you were concerned about bone loss with the lupron especially since you are only 24. Did your doctor mention he/she can do "add back therapy" along with the lupron to prevent the bone loss at the same time? You might want that. They give you 5mg of a hormone Norethindrone along with the Lupron. You can find out more at endofacts.com or ask you doctor. Well if you read this, feel free to write back. At this point I am confused, is my abdominal pain and swelling due to just the endo or is it IBS or even some crohn's or is it both. Hope to hear from you. Thanks

brit tuck
Regular Member


Date Joined Jun 2007
Total Posts : 143
   Posted 10/8/2008 10:39 PM (GMT -6)   
Thanks Habshockeyfan and Den48 for responding. I do know that in all likelihood, the one thing that will really get rid of the pain is having a hysterectomy. But I am no where near ready to do that... mostly because of my age. Even my gynecologist said she felt guilty asking me during my most recent appointment if I wanted kids, or if I wanted to make the decision to have the surgery now. It just seems too early in my life to have to decide that. It sounds like you're older than me Den48, if you had a laparoscopy in 1991. I feel that maybe one day that will be the path I choose, but it just seems too much right now and a bit unfair to have to decide that.

Habshockeyfan, did you take the Depo for something other than endometriosis? It's good to know about the other stuff that it causes, since I'm really just starting to look info up about it. I've had it mentioned to me for a long time, but I've always put off even thinking about it. But it seems like I really need to look at it as an option since surgery probably isn't the best one to use as treatment. Is your sister doing better now? I've heard that sometimes it's even possible to have some pain after a hysterectomy as well. I hope both of you are doing better though.

Den48, I hope you get a diagnosis sometime soon. My GI doctor thinks I have IBS on top of my Crohn's, so I totally feel where you're coming from. If I can be of any help at all, feel free to ask me any questions and I will do my best to answer them. The people on this forum are great and are an amazing resource of knowledge. I'm sorry if you have Stage 4 of endometriosis, because that's what I have. It's not fun... It seems that your doctor at least is giving you an indication of what she thinks you should do. I feel like mine feels so guilty about my situation that she can't really tell me what she thinks I should do, because all my options are pretty sucky. So it's really up to me to decide what is the lesser of two evils - the laparoscopy or something that puts me into early menopause. Thank you for reminding me about the add back therapy, it just doesn't seem completely fool proof though. If I really damage my bone density, I don't know if there is a way to ever completely fix it.

More about your comment though, where exactly is your swelling? Have you seen your GI doctor about this? I would definitely talk to your GI about it, because the swelling sounds a lot more related to Crohn's than endometriosis. I hope you get it figured out though, and can start on some treatment soon!

I did get a call back from my GI doc today though. I have my capsule/endoscope scheduled now.. so that'll be in a couple of weeks. So at least that's getting figured out. And if I do decide to do the Depo or the laparoscopy, the earliest I would start would be in December because of school. My gyno wants to watch me and make sure I do ok if I start the medication. But my GI doc said he didn't think the Depo would have any negative side effects specifically in regards to my Crohn's treatment. But we'll see.

yogaprof
Veteran Member


Date Joined Apr 2006
Total Posts : 1651
   Posted 10/8/2008 11:34 PM (GMT -6)   
one more thought about the pain, I had PCOD and had several surgeries and finally a hysterectomy. the surgeries caused terrible pain, like you mentioned, due to adhesions. the adhesions seemed to cause the pain far more than crohns. I had two laps for the adhesions, but of course the laps can cause more ahesions...a vicious cycle! take care. yp
49 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. December '06 had adhesions cut through a laparoscopy. Now taking Glycolax, Ultra Fiber Plus, Florastor, and DHEA. Have become gluten-free diet per naturopath's tests.


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6923
   Posted 10/9/2008 9:16 AM (GMT -6)   
I have been on the depo shot for painful periods for 14 years has been the only thing to ever give me any kind of relief. I did have an ovarian cyst burst a bit back, but the docs felt that was more because my intestines were very swollen.
Forum Co-moderator - Crohn's Disease
We will find a way, or make one.-Hannibal (crossing the Alps in the 15th Century on war elephants) 
Make sure your suffering has meaning...
All suggestions/options/opinions are caveated with please consult with your local health care provider...


ZenaWP
Veteran Member


Date Joined Aug 2007
Total Posts : 884
   Posted 10/9/2008 11:30 AM (GMT -6)   
brit tuck, I have Crohn's and have had two laparoscopies for endometriosis.  I take Depo Provera shots every 3 months and love them.  Granted, I am on the one patient my doctor has seen that didn't gain weight on it, but I love it.  Having the second laparoscopy helped a great deal with the pain and now it seems that the Depo is keeping the endo from coming back.  I do take calcium and vitamin D supplements, in addition to regular multi-vitamins, and my OBGYN tested my bone density a couple years into the Depo treatment to see where I was at (bone density looked good). 
 
It is hard to know what pain is caused by the endo and what is caused by Crohn's, GERD or IBS (I have GERD also).  But, I do know that having the laparoscopy took care of a lot of the lower abdominal pain and the pain with intercourse.  I don't know what the difference between Depo Provera and Depo Lupron is, but I can say that I have not noticed any menopause symptoms being on Depo Provera.  But, I still had to have the laparoscopy to remove the endo before the Depo Provera did anything to help. 
 
Your doctor should be able to monitor your bone density, so I wouldn't worry too much about that...what's the point in having good bone density when you are miserable and can't do anything anyway?  =)    
Crohn's Disease, Acid Reflux/Gastritis, Hashimoto's Thyroiditis, Endometriosis, Arthritis, Depression/Anxiety.  Too many meds to list them all.  =) 


cindywchrones
Veteran Member


Date Joined Mar 2005
Total Posts : 1051
   Posted 10/9/2008 2:10 PM (GMT -6)   

I have been told that is very common with women with CD..I was given large doses of progestrone to clean me out..then it was depo..I have been told now to either have a D&C or a hysterectomy..or just put up with it??  My CD flares when I start my period everytime..

Cindy


brit tuck
Regular Member


Date Joined Jun 2007
Total Posts : 143
   Posted 10/10/2008 11:55 PM (GMT -6)   
Yogaprof, what is PCOD? I have heard that about the surgeries causing adhesions and creating a vicious cycle if you keep going in to remove them. But during my second laparoscopy, which was almost 3 years after the first one, a lot had changed in between - like a ton more endometrial growth and my uterus was even tilted. But I do have to be aware of the whole issue of causing more and more scar tissue though. I hope you're feeling better now though after the hysterectomy. Does the pain go away after having that or are the adhesions causing problems?

There are also two different Depo shots - the Depo Provera and the Depo Lupron. They do different things and have different side effects. If I was to use any medication besides the birth control to try and control the endometriosis, my doctor said she would recommend the Depo Lupron. As far as I can tell, Depo Provera is the progesterone, which is I believe what you used Cindy and Zena. So I'm glad that it's seemed to help you Zena. What is a D&C though Cindy?

I just don't know what I'm going to do. I wish it was simpler. I joked with my family that I'm not asking for much... just two miracle cures (one for the Crohn's and the other for the Endometriosis). :)

Does anyone know why women with Crohn's also have endometriosis? Does it have something to do with Crohn's being an auto-immune disease?

BarbieJerseyGirl
New Member


Date Joined Jul 2011
Total Posts : 2
   Posted 7/11/2011 9:26 PM (GMT -6)   
Hi! I'm not sure if this page is still active... but I just wanted to see if any of you were still around.  I just went through my first lapar.  and I'm still in such severe pain.  I have been going through tests for 8 years now, endoscop's, colonoscop's, cat's, and they never found what was causing all of my anemia, bruising, weight fluctuation, ibd, etc.  It got to the point where using the restroom... was a nightmare.  A few months ago I saw a new specialist and she thought it was endometriosis.  I had the lap and it was all over and scar tissue everywhere.  I'm on so many medications for so many other things, she didn't know what to suggest as far as maintaining any pain.  So I told her if I had to, to do a hyster.  She then told me she found the positive cells for cervical cancer (hpv). That she had no idea how long they had been in the "growth" stage, and that she couldn't state positively if all of my pain was just from that or if it could be the production of Cervical Cancer.  Now that my surgery is complete for the laser removal (other than the remaining on my intestines and bowel; plus scar tissue), the pain is still tremendous.  My legs are still going numb, my back pain is breath taking, going to the bathroom is worse than going to the dentist, and speaking of, all of a sudden, my gums are swollen.  I don't know what to do.  I feel lost.  I thought I was tested for Chron's but does any of this sound similiar!?!?

RMom2
New Member


Date Joined Jul 2011
Total Posts : 9
   Posted 7/13/2011 1:24 PM (GMT -6)   
I was just reading this posting and I thought wow this is crazy it sounds kinda like me too.  I was diagnosed with endometriosis back when I was 21.  The DR did a lap to find it, he said you need to either start having children now or never.  So, after that I went on fratility pills to get pregnant w/our first daughter.  about a year later I had problems again, went on Depo Lupron shots for 3 mths, fratility pills again and had our second daughter.  When my youngest was one, I had a hysterectomy,  ( I was 25) they took my uterus, both overies, apendix.  I have had over 5 additional surgeries for adhesions that caused a mess.  I was then diagnosed with crohn's when I was 32.  I had my gallbladder taken out only two years ago too.  I have been to many GI dr's since and having trouble with them thinking it's crohn's or not.  I have had 2 serology tests done over the seven years that showed I was 98% and 97% possitive for crohn's.  They see inflammation on a CT scan and see erosion on a capule endoscopy.  but the new dr says since he can't biopsy it he is not sure.  I get sick every 6mths and it takes me about 2 mths to start feeling good again, never great.  I had him put me back on asacol recently since in the past I felt good on it.  But I feel lost, upset and mad.  I also hate when the Dr says are you depressed, how would they feel if they had this problem for 7 years and you are getting the run around.  My husband has thought about me going to the Mayo clinic in Arizona to see if they can help.  But I not sure if my insurance will cover it and just the cost of going down there.
 
Do you have any suggestions or has anyone been to a Mayo Clinic?

BarbieJerseyGirl
New Member


Date Joined Jul 2011
Total Posts : 2
   Posted 8/4/2011 7:31 PM (GMT -6)   
I'm so thankful you wrote....
I wish I had the opportunity to have children... So desperately...
I was married and divorced within two months.. he couldn't put up with my constant pain and told me that I just wanted attention. Funny thing is, I never complained and always had a smile, worked full time and took care of everything.  Once he realized that I was always on medications and constantly at doctors, it was too real.  Now I'm almost 29 and alone.  But yes, I'm thinking about taking a trip to the mayo clinic.  I can't live like this.  I just had the lap over a month ago and the pain has NOT subsided, I went to the doctor yesterday and told her.  All she said was that is normal.  Let's just do the hysterectomy and see if that stops the growth.  In the mean time, I have the scar tissue all the way up to the liver and I can't breath half the time.  I still can't go to the bathroom more than once a week (sorry to be so blunt) and I feel like she is just set in this.  Granted I have had a million tests.  What is left. I just don't know.
Do you think the mayo is my last step?  what else can there be?  I know I have the endo and severe anemia.  But she also found I have the high cells of HPV.  Thank you to me for being celebate for the last 2 years and always using protection, it doesn't matter if you use a condom or not.  I fear for the youth now.  I was the one who waited until I was engaged, never (still have never) seen or used a drug, didn't drink till I was 21... and yet... I feel like i'm being punished...
 
LOL, are you depressed? - exactly!....
Hope to hear back soon...
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