Crohn's and endometriosis

[bella_sky]

Symptoms: I had really heavy periods as a teenager. Missed school every month and passed out regularly on my period, but it all improved on birth control pills. And it wasnt until just before the Crohns moved in that the bleeding got heavy again. So my gyno had me stay on the same birth control pill, just skip thru the packs so I would only have my period every 3 months, kinda like seasonique. And it worked so everythings been fine.

Just I guess it really hasnt been fine. For the past three years, the Crohns symptoms are worse during the period, sex has been awkward because the cramping is obscene during and after, I also have more back pain than can be explained by the major back surgery, constant bloating, omygoodness I wish I had not let this go for so many years. I honestly thought it had something to do with crohns, the back surgery, my fiance's size... I didnt think until this past month that it could be anything wrong with my lady parts.

I have several health conditions which we had to rule out, and my journey began last week with the gyno for finding out if its endometriosis. Those conditions include Crohns, Crohns arthritis, bursitis in both hips, Avascular Necrosis in both hips, neuromas in foot and back, and finally a Hemangiopericytoma tumor that was wrapped around my spine (you can try to Bing it but its so rare there isnt much to find, less than 80 reported cases in the world, in history) I still cant believe something is wrong with my lady parts ontop of everything. :eek2:

Seriously what kind of freak has these conditions in one body. :redface: The chronic pain is really taking its toll emotionally and physically. I cant do the hormone treatments I'm reading about, the Lupron. My weight gain is already too much, I'm still small but I feel huge. I've gained 40lbs in the past few years, thank goodness I was underweight at the time due to crohns but its still bad. Sometimes I kind of wish the crohns would go active to lose some of this weight, :ybatty: but that means the medication wont be digested and the pain will get 100times worse which I cant take any more pain, I cant take the pain I currently have anymore. How messed up is that. And mood swings, that comes with the chronic pain territory!!! I def cant take more of those, and my fiance would be sweet about it but its just not something I can put him thru more of, I wont do it.

My fiance has gone thru enough, our relationship has endured so much, I just pray that we can continue thru this one. :yfrown: Have any of you had nightmarish results in your relationship from a positive diagnosis leading to a partial or full hysterectomy? I dont know what to do about this, I mean there really isnt anything I can do, which is by far one of the worst parts about being sick all the time.

Sometimes its just hard to fight and continue to stay strong for everyone, sometimes I just need to be weak and I used to feel like this is one place I wasnt alone when I struggled so badly with Crohns, so I hope that some of you out there respond to this because it would mean a lot to me. :ghug:

 

[mickey]

Take a chance and allow yourself to be weak and rely on him a little. That will tell you whether you will allow yourself to totally be yourself as his wife. That is the ebb and flow of a relationship and will also tell you of his compassion and his commitment to you. You may be surprised and fall more in love with him.

Finding the love of your life is difficult; almost as much as healing your body. However, two are better than one and can help you fight this disease. I would also check on your thyroid; it may be off and causing the mood swings/hormone issues. That can easily be adjusted.

I have recently been informed by my doc that there are studies showing good probiotics can make a difference in your overall health. That can help reduce some bloating and discomfort. You have a wonderful man who wants to be there for you; let him. It is his choice to be with you, so let him. Your health will improve and hopefuly this will be a painfully old memory. Good luck!

 

[Kendra]

Ive had CD UC & IBS for 20 yrs. now my husband of 6 yrs next month is getting tired of me being sick all the time. I`m worried he might leave me. We had an argument last night & he come right out & stated he deserved someone that can go out & do things, road trips, etc, we all know how that is. He said he deserved someone who wasn't sick everyday. He said i`ve had enough I hope we can work it out, but I think he is tired of me, oh & he knew I was sick when we met. Dont know what to do anymore.....tore my heart out to hear him say that

 

[GrumpyGuts]

Hey Bella_Sky,
I'm new here, but have been dealing with Crohn's for 20 years. I also had female trouble and thought as you did that it was just my gut until I had my colon removed and went into remission and the pain every month wasn't a flare. I had a bad relationship when I was diagnosed and we have been divorced for 10 years. He was/is a real jerk about me having surgery and having an ileostomy etc...I am now with the most wonderful man who loves me just the way I am. We have been together for 4 years. I recently had a full Hist (October 2011) because of massive ovarian cysts, pain and chronic bleeding. Spent 14 days in the hospital because my Crohn's was acting up and had adhesions on my small bowel, but now my female parts are great and my sex life is Awesome once again. My Crohn's has flared (in my tummy) but hopefully will get under control soon. The Hist isn't so bad and I too have chosen to forgo the hormones, I use Black Cohash for the "Hot Flashes" and night sweats, it takes a couple of weeks for it to really start working but is a better alternative for me.

I believe that if your man has stood by you through all of the other things then he should stand by you through this. You can also try couples counseling and CD UC support groups. Keep your chin up things are always darkest before the dawn!

 

[bella_sky]

Thank you Mickey for giving me the push I needed to push the convo with my guy. It was incredible to hear that he would rather have no kids with me than kids with someone else. And you're right that I do need to lean on him more, and not be afraid of it. He has been there for me thru a LOT, but also hasnt. He avoids any and all conversation about my illnesses, he likes to treat it like I'm completely healthy and we're going to grow old together. Which is basically impossible, miracles do happen tho. My tumor will be back, most dont survive the 1st one much less the 2nd, and the stats are against me for the next couple of years. It would be better to know now if he can handle it than on my deathbed and alone. Anyway, thx for the push, it was a huge weight off my shoulders and an awakening I needed Props to you my friend.

Kendra - I am so sorry to hear about your fight. Before this guy came along, I was with a total dbag who couldnt handle me being sick at all but he could hardly handle when I gained 5lbs or didnt have my hair right. When my fiance came along a month after my major back surgery, when I could still hardly move/ walk/ get to the bathroom, I thought I hit the jackpot b/c he was so thoughtful and caring. But in his head, I was supposed to be better in a few months and everything would be like normal. But it wasnt, I kept getting diagnosed with crap over and over again, and still going. Idk what it feels like to be on their end, it has to suck, but it feels like they have no idea how often we are strong and keep from them how much pain it really is, etc.... so when they express their frustrations in such a hurtful way it hurts like hell. And they always know what to say to break ur heart in a million little pieces. I wish they could just say how they feel in a nice way, maybe actually cry together in our hurt then build each other up with words of encouragement but guys just suck so bad when it comes to feelings!! The words he used were the worst and he needs to know they cant be used again. I really hope that if you are in a bad realtionship that you find someone who will treat you better, but if he just sux at communicating, then I hope you work it out soon and have some fun making up . Will you please message me or write on this post with how things turned out with you?

Hey Grumpyguts, thanks for sharing your story. I'm so happy to hear that you found a wonderful man and that your sex life went back to being awesome. Mine is getting more and more painful UGH! Most of the time I can hide it from him but its getting more difficult. And now, due to insurance issues, the lap had to be pushed back to the end of next month , but I've been putting this off for years I guess another month isnt going to hurt too much. Its really nice to hear a happy story, thank you Though I am sorry to hear you are active, idk if you have thought about trying a biologic agent/ TNF inhibitor but if you have any questions about going that direction to avoid anymore surgeries, please feel free to message me. Remicade put me in remission, kept me out for awhile but I developed drug-induced lupus, so now on Humira and just a colonoscopy a few weeks ago and had only mild inflammation.

Thanks again guys, it helps so much to hear from others going thru it. I really cant thank you enough

 

[mickey]

Don't forget that miracles DO happen! I remember when my nephew was born 18 years ago...he was in the hospital with internal hemorraging and it was two months and many blood transfusions before they figure out why. Once they did (Protein C deficiency being the most prominent problem), they told my sister he would never talk, walk and probably have brain damage. While it took him a little time to catch up on weight, etc., I am thrilled to see him graduate this May...right on time! He was talking a few months later than other children as a toddler, walking a few months later, but otherwise on target. Focus on ONLY healthy goods/drinks/other product going in you and you will find it hard to breed disease....healthy in, healthy out. While we may have a predisposition to a certain disease, I truly believe we have the ability to help out bodies heal. It may be hard for your fiance to talk about the disease, because it is an intangible that is hard to understand, unless you go through it. We are used to getting the measles, the flu, getting over it and it is sometimes hards for others to realize you may battle (to some degree or another) this your lifetime. Keep researching, focusing on a healthy lifestyle and expect a better outcome. Miracles do happen...have faith!