3mos+..going back in..Rt side pain.. is it Crohn's? Colonoscopy on Monday..Scared!

Ok, it's been over three months now and the lower right side pain is not only still there, but worse. And I am down to about 110 -113 pounds, depending on how long it stays inside before it comes right back up or out in diareah. I've had that for the entire three months and also the right side pain. I am puffy, bloated and my belly gets hard and it is hard to sit or talk for a long time. I am down flat for over half my 24 hour days. Nothing showed up on CT scan, so the Surgeon and my PCP decided enough was enough (seeing one of them about every week) and sent me to a Uro/GI Specialist and this Dr is going to perform a Colonoscopy on Monday. That sure came fast. He will find out then if I will need more surgery (Lap explore for adhesions) or if he finds out what is causing all this during that procedure. The bad things are that 1) I have a cold with \fever right now and have not had the chance to get my flu shot - that was supposed to be next week too, and 2) I am on the potty all the time NOW- not to mention the meds and clear liquid diet that I have to begin on Sunday that says "Make sure you stay near a toliet till surgery time"....Gee FUN ! I am in constant pain from all this since Day ONE of the hyst.
As far as the hyst itself, I feel like the inside is ok, but maybe the cuff is a little sore? like from the OUTSIDE of it not the inside? My bladder does hurt alot and it feels like rubber bands pulling on everything in there.
They are thinking Crohn's Disease. So I looked that up and it does not sound promising and more surgeries are usual for that.
Sisters, I am scared. I did the hyst because I didn't have a choice, and didn't want to do THAT !!! I wanted to keep my uterus and thought that was the worst thing to lose. And now.... If I had to wear a colostomy bag..... Oh Lord. I can't imagine because I USED to be such an active person before this summer. And I always thought that being deaf and the heart and health problems I had before- those were my cross to bear.
I am trying not to put the cart before the horse- they do NOT know what it is yet. Only suggested what it SOUNDS like. I know that. But this is like waiting for the hyst- you want it to get here because you are out of your mind in pain and yet you are so scared of the changes and pain to come and don't know just what they will find.
I am on Zoloft and Buspirone to help with the severe depression that set in about 4 weeks post op, and the Buspirone was sent to help keep me from freaking out this time for surgery. I didn't wnat to take it at first, thinking they were just saying it was in my head, but now I know that they just want me calm till they find out what it is but they DO believe me that somethign IS very wrong.
I know others in our family who have had this procedure done, BUT, they were NOT in pain already and didn't have prior surgery previously that they were still recovering from and nor did they have emotional things going on from that.
I am sort of at the end of my thread here. But DH and our boys are keeping me hanging on with prayer and support. And I know my Sisters out there are too. I read alot of the posts and just close my eyes and pray for those who are having a rough time right now. It's helping me through MY OWN.

Hi Fireman's woman,
I am so sorry for all this you have been going through. I will pray for you. I'm glad the doctor is getting you in quick for the colonoscopy, It has been long enough for you. I've been reading some of your other posts and it sound like your family is really supportive and caring, so glad for this. Just wanted you to know I was thinking of you and praying for you this morning.
Cathy

I have colitis (similar to Crohn's but not quite the same) which docs suspect came from the numerous bad reactions I had to hormonal treatments for endometriosis - anything with estrogen put me praying to the porcelain gods or on the potty or both, and I had rectal bleeding as well, ended up in the hospital with very low BP and dehydrated.

Eventually I had a colonoscopy to confirm colitis, and I have been on prednisone more than off it since. My hyst in March triggered another flare-up and I am still tapering off the pred now. It's a pain, but it is controllable.

Crohn's treatment has improved greatly in the last few years as well. I have known several people with Crohn's throughout my life, and the younger ones are doing so much better and leading very normal and active lives, especially compared to the ones who had it years and years ago. 20+ years ago, my teacher, who was in his 40s and had had Crohn's most of his life ended up dying from it. Less than 20 years ago, I had a schoolfriend who had to wear a feeding tube in her nose in order to get enough nutrition. Another girl I know, a family friend, who is about 10-12 years younger than me (she's just graduated from high school) spent most of her young life living on liquid diets and having surgery on a regular basis, but is now leading a very normal life and doesn't have a colostomy or anything.

The colonoscopy will probably tell the docs what they need to know and they can start treatment right away, which is a very important thing. I'll be thinking of you on Monday... check back in and let us know how it went.

Thanks SO much to both of you for replying. I was not going to tell anyone because, frankly, the hyst itself was so embarrasing to me- you know- a very personal thing. I had to tell people around me in order to get more info and support that I needed, but at the same time felt like everyone knew what was "wrong" with me and it made me very self-conscious and it's been emotionally wringing. The women in our church came up to me that first Sunday (I did make it to church only 2 days out of hospital and it was because DH and sons did EVERYTHING and even helped me get showered and dressed and they set up a big easy chair with pillows in the sanctuary for me to just sit and be comfy. I actually fell asleep at one point, but it was Father's Day and I didn't want DH to miss "his" day at church.) anyway, those women came up to me and were a HUGE source of comfort. And instead of thinking I was now a "half woman", I was told I had just joined a "CLUB" ! I had no idea how many of them had suffered through this same surgery, feelings, etc. and it was just SO supportive for me and I think it helped THEM too- to be able to talk about their own experiences and hurt. It sure did open up the men- a couple of them came to pray over me and they are the MOST GENTLE men who adore their wives and understood what I was going through. It helped DH and our sons to know how to help me out this year through all of this.
But this next thing is more embarrassing still. I gave up my precious uterus and don't want to give up any more private parts.
DH said (and I did think this myself too) that the hyst was a no-choice thing and it all happened so suddenly and got very bad so fast, that perhaps it was NOT the main thing the Lord wanted to be found as the problem.
See...
They are thinking that THIS problem was brought on by the surgery from the hyst. So what if there is a bigger problem than just the tumors and would-be cancer? What if God really wanted the underlying thing to be found and I had to go through something else in order to prepare me for this.
I'm not fishing for more trouble here, but it DID cross my mind and DH voiced it as well. But the good news is that one way or the other- we will find out THIS WEEK.
I just hope I can hold myself together and not take off like I did before the hyst. My mind just took over and away I went. I KNOW I am not in driving shape but my mind has done some very strange things this year from all of this. It is scary. I've been able to ward off the VERY bad bad feelings and thoughts the past few weeks- till now. My dreams are very vivid, silly, and stoopid, but scary too.
You know- it's like every single surgery I have had has to do with my PRIVATE areas !!!! And there is just so much a person can handle before you begin to lose all your dignity. So it's why I have not emailed my closest friends about this yet and just hope they latch on here and read this. They all keep asking about me and I know the depression still has me in a bit of a grip yet. It would help alot if I could get well physically. I know that. So I am just hanging on-
by a thread.

I have IBD as well. Inflammatory Bowel Disease for those not familiar with the abbreviation.

Let me reassure you a bit, if I may, about the colonoscopy. I have one a year and have for 5 years now.

The prep for the procedure is the part that will be the hardest. The procedure itself will not cause you pain.

They take you back, start and IV. They wheel you into the room the procedure will be done in, speaking to you all the time. They then have you lay on your left side, put some versid and I believe most times Valium in your IV...you snooze through the procedure and do not remember anything about it. You wake up in a recovery room, and your husband or whomever took you will be there. The doc will come in and talk to you about what was seen, or not seen.

I rarely remember anything until I am either in the car or in the bed at home, so having someone who can really listen and relate back to you what you heard is very important [in my case it is at least].

IF they find IBD of any sort [Crohns, Colitis] they will then start talking to you about a course of treatment.

I look at my disease this way...I can let it define me, I can let it be who I am...or I can be me. I'd prefer to be me! I try never to let it keep me from doing what I want, sometimes it wins...but more often than not, I win! I hope you find that more often than not...you win, if you have to face IBD.

I am going to pray for you, right now when I finish this message, that God will guide the docs to where and what they need to see. That you will have peace of mind. Remember...what time I am afraid, I will trust in thee. Psalms 56:3

Thinking of you, and praying for you,

Karen

Hi there!

I just wanted to send you some hugs. I personally have not had a colonoscopy - but can certainly relate to the multiple procedures - one right after the other. It does start to wear you down. It's wonderful to hear that you have such a supportive family and Church family. That makes a huge difference.

I'm concerned that you were embarrassed or ashamed that you had to have your hyst - and are having other problems. Please don't beat yourself up over this. It is so completely out of your control. It's not something that you did to yourself - and is nothing to be embarrassed by. The fact is that you were ill, and you needed to be healed. And the same with this Colonoscopy. As far as the Crohns Dz - I've known some people that live a normal life with Crohns. So if that is what it ends up being - there are many treatment options available. Please try to keep your head up. You will get through this!

Take care of yourself!
Sending lots of gentle s
Cortney

Don't borrow trouble before you have to. While I haven't had the colonoscopy I have been sitting in the waiting room while my best friend had one (I still haven't figured out how I was there and her husband wasn't). She was very groggy when the whole thing was over and doesn't even remember it. You have a very strong faith; lean on it and your family -- DH, DSs and church to help you through this. I agree with kselibrary -- you can let your health problems define you or you can define yourself. You're a strong woman (otherwise you would just have given up and not be here right now) -- let that be how you see yourself. Good luck with the specialist.