Have Crohns. Need advice from other Crohnies

I have had crohns for 24 yrs. I am 38 and for the last couple of years, I have had consistant flare ups around my period. My periods have become irregular. I have been through so many tests, it is ridiculous. I have talked with GI and Gynnie. I am currently on the Humira treatment. Kind of my last resort for my crohns. My last colonoscopy was Sept 17th, 2010. Four feet looks like a meat clever has been beating my large intestine. Anyway, after LOTS of research, I have noticed that other crohnies have the same problems when they approach this age...give or take.

Is there anyone out there that has had a hysterectomy and has crohns? Curious to how this has affected you physically?

Any input would be great!!! Thank you all!!

Hi Susan, Im having a laparoscopic hysterectomy on October 27 so I cant speak about the after effects just yet. I have Crohns and Ulcerative Colitis and had to get preapproval from my GI to have the hysterectomy. Actually, it was my GI that recommended the hysterectomy. He says my fibroids have completely flattened my colon which adds to my consipation and pain during BMs. I was diagnosed with a mild case of Crohns in 2005 and have been on Pentasa and Canasa ever since. My GI had to do the pre-op which involved testing my SED rate and my inflammation levels. My inflammation is currently a half a point higher than it should be but he is not worried. I am not having current symptoms of the Crohns so I should be ok. I am curious to see what happens to my bowels after the pressure has been removed. I will check back with you later.

I don't have Crohns, but I really feel for you both. I know it is difficult dealing with that. Hopefully the hysterectomy will help. Do they think there is a hormonal component aggravating it as well?

Kat, good luck with your surgery. I hope you have a speedy recovery. My surgery is completely voluntarily. I have had flare ups for two years. I really believe it is a hormonal connection. I have done a lot of reading and I don't mean to sound gross, but around your cycle, typically women tend to have more frequent BM"s. Well, mine has caused other physical changes, ie, hemorroids...every month for two years. As soon as I have my crohns settled and the hem. gone, I am right back to my cycle. I have tried birth control...seasonique and the two months I did not have a cycle, I didn't have any problems.
I believe it boils down to progesterone (sp?). SO, long story short the advice I was given from both GYN and GI was to control my hormones "manually" in essence. If I take ovaries, we can play with the different levels of hormones I need to regulate me. Right now my body is on auto pilot. I am a MESS!!!! I am trully hoping this will solve my problems...once everything is out, there is no going back. That is why I have reached out to other people. Thank you both for your comments and I wish you both well. Thanks for listening.

I was diagnosed with Crohn's about 15 years ago, and I'm having my Total Lap November 3rd. My main gyn prob is endo and heavy periods. 2 years ago my gyn tried to put me on yet another pill to try to regulate my period, and I immediately had heavy bleeding - both ways. So I think hormones have a huge impact on Crohns, as I only have a light flare every 5 years or so. I take Asacol and am on a pretty strict diet, but it works for me.

Well, then the Doc put me on prednisone, and all bleeding immediately stopped. But I never really felt right, lots of constant nausea. Started out just having issues around and during period (but now it's constant pain and nausea) and then bowel bleeding started, but only during periods. So I told my gyn I'm ready for the hysterectomy.

He convinced me to give Lupron another try. Within hours of the 1st shot I felt 100% great, and didn't have any bleeding at all for 2 months. No Crohn's issues, no endo issues. Back in my size 2 jeans! Party time! But it didn't last. The 3rd shot didn't take I guess. 1 week into it all the pain was back, big sad tummy (hello again size 6 jeans) and horrible back pain.

So now I'm scheduled for TLH Nov. 3rd. Crohn's makes your entire bowel wall weak. I think that endo emplants cause a lot of bowel pain, and in my case monthly bleeding. Big upset uterus' swell up and put pressure on your insides too, so anything inside that has issues just gets more abused.

I'm looking forward to surgury, it can't possibly get any worse at least! I'm wondering how recovery will go for us. I for 1 can't take any strong meds, and I'm expecting that surgury won't go quite as planned (never does for me!).

It's good not to be alone on this one. Crohn's isn't exactly dinner convo! Big hug to y'all, we'll get through... like we always do.

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Originally Posted by susannorton I have had crohns for 24 yrs. I am 38 and for the last couple of years, I have had consistant flare ups around my period. I am currently on the Humira treatment.

I fell like there IS a connection, because I've had some colon/digestive issues myself and noticed they flared up every time I cycled and blew up my stomach like a balloon. I was hoping the hysterectomy would solve that problem, but so far, 8 days out from the procedure, it's temporarily aggravated it, and I'm dealing with some loose movements and blood. But no distended stomach anymore! So that is good.

IMO you may or may not have some temporary colon issues after the surgery, but if you do it should get better. I would definitely go on a strong probiotic before and after the surgery. It can't hurt, and can definitely help, especially since studies prove being on a probiotic cuts down the risk of infection after surgery. And the Humira, as you know, leaves you a little vulnerable to infection so I would do everything I can beforehand to protect yourself. And find a good hospital with high survival rates. I don't mean to be funny, but hospitals ARE rated, and some manage to keep infection and illness down better than other hospitals.

BTW my mother has Crohns, had a hysterectomy long before that started up. She's past the Asicol (sp) and onto Humira like you are. The Humira works. She's also taking a whole food supplement product, which has helped a lot.

Thank you all for the input. You know you go to all of these dr's and they all point to the GI. The GI dr points at the GYN. Everyone wants to blame crohns. I know I am not crazy and reading everyone's stories here prove it. GI Dr's should really learn and listen to their patients and try and search for answers.

I am nervous about post op...God knows I do not need anything else to go wrong. I really hope that all goes well with all of you. Hopefully there is light at the end of the tunnel for all of us.

Well! Im just getting back and youre just getting ready for your surgery. Ok, Im 6 weeks in recovery now. I cant say that I have had any specific problems with the Crohns and the hysterectomy. Maybe a little diahrea right after but nothing since. My inflammation is causing a delay in my recovery. Still sore, incisions still irritated, etc. But no major problems with Crohns. It wasnt active prior to the surgery either. Now, I never made a connection with the uterus/hormones and Crohns. I wasnt officially diagnosed with Crohns until 2005 so Im not sure about that one. I had the hysterectomy to have my fibroids removed. I felt better as soon as I woke up from surgery! But the recovery is taking me a little longer. I think you will be ok. Just remember to take it easy after the surgery.

I totally agree with you about having them all point to the gi while he points to them. I have been there, done that and continued with that after my surgery. I know this is going to sound strange but we are not 100% sure what I have. Was diagnosed with Crohn's in 2001 but there is now a question of whether it is crohn's or ulcerative colitis. At least we did determine I had a problem. Am being treated for it and doing pretty well. My surgery went fine and I did well at first. The one thing I would tell anyone to do if they have crohn's or colitis and are having this surgery is DON'T push yourself. I didn't do this and have had problems ever since. I also have IC,GERD, and endometriosis on top of this so it has been difficult for me. I am doing better but I warn people not to be like me. I was going to be superwoman and instead ended up being ill and in pain.
I am doing better and I really don't think that this was because of the Crohn's. I think it was in part due to me pushing myself way beyond what I could reasonably do. So my advice is to just let yourself heal and take the time you need. I am sure you will do fine. Sending lots of wishes for an easy surgery and recovery.

This thread seems to have been revived. I guess I can add my update too. My colon has definitely improved since the hyster, no blood, and stool is better formed. Still on the probiotic and it's helping so I'll stay on it. I think not having my uterus pushing into the colon has helped, but now I'm just wary about the colon pushing into the vagina, because I feel that a little sometimes where I didn't pre-hyster. All the organs are getting resettled so that's probably just temporary. Mostly it's good, and I'd say better than pre-hyster.