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Crohns and Hysterectomy

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Posted 8/26/2011 12:47 AM (GMT 0)

I am 46 years old and was diagnosed with Crohn's in my mid twenties.  In 2005 I have to have a small bowel resection.  Since that time I have been blessed to be symptom free.  NOW of all things I have a uterious full of fibroids - to the extent that my uterious measures 14 1/2 cm.  I have had a biopsy and it came back non cancerous.  I have horrible cramps during period, but have now got the bleeding under control with a new type of birth control pill so that I am only bleeding 10-14 days a month.  Often very large amounts and clots.

Here is my question - has anyone found themselves in my position and decided to have the hysterectomy? If so - does anyone have any POSITIVE results.  All my research so far has not been positive.  I could really use some feedback.

Thanks

Posted 8/26/2011 1:00 AM (GMT 0)
Oh - I am also researching endometrial ablation. Has anyone with Crohns and non symptomatic had endometrial ablation and if so, can you tell about your experience. Thank you all so much for all the help and support through this. I am so glad that I have found this web site.
Posted 8/26/2011 2:35 AM (GMT 0)
Sassy - just curios, besides the heavy menstrual cycles, what are your other symptoms? I am sorry you are down to 10-14 days and that is good?! You poor thing :( I missed my last cycle but this is also common when I am on immune suppressants. I thought I had a UTI and so far, no bacteria was found (going to check again tomorrow) but, I have horrible low pelvic pain and pain in my back, nausea, headache and fever. I have no idea what my lemon of a body is up to now :(
Posted 8/26/2011 7:05 AM (GMT 0)
If you are considering endometrial ablation, google long term complications. Some of the complications are: postablation tubal sterilization syndrome, retrograde menstruation, and potential delay in the diagnosis of endometrial cancer.

There are some treatments for fibroids that don't involve a hysterectomy, the fibroids can be surgically removed in various ways, or they can be treated with a laser or a procedure where they inject them with small particles to destroy the blood supply. You can see if they are options for you.

I always try to check the long term complications for any treatment or procedure I am considering. Many people are happy shortly after a procedure but some then have problems later.
Posted 8/26/2011 9:02 AM (GMT 0)
I had a hysterectomy in 2000 when I was 40 and it was the best thing I EVER did (surgery wise anyway).

No impact either way on my crohns and it solved all my uterus issues.

hope you are as lucky :)
Posted 8/26/2011 12:10 PM (GMT 0)
Hi Sassy

I´m 46 and 09 i had an hysterectomi. I feel totally fine with it. No menstruations never have to think about what time of the month it is! In my case i´ve been operated tree times för gynecologic matters and now I have got aderensis so much that they can´t operate me other than if my life depends on it. But that´s someting quit rare so most of the people having this surgery doesn´t get that complication.

I have got crohn and had to make a pause in my medication ( Humira) but as i wasn´t totally helped by it, it made no diference at that time.

So I can only speak positive about it.

Good luck!

"abroad"
Posted 8/26/2011 3:13 PM (GMT 0)
I had a complete hysterectomy at 36 yrs old and I am now 53. Like Kiwi it was the best thing I ever did!! I was miserable 3 weeks out of every month due to my fibroids. After some research I also found that if I left the ovaries in I would still suffer with the PMS symptoms, so I opted to have everything removed instead. So happy with my decision. No longer have that monthly misery anymore. Just take my little estrogen pill each day and I feel good. Hugs!
Posted 8/26/2011 5:00 PM (GMT 0)
I'm 34 and recently had a hysterectomy and resection at the same time. So far, so good, hysterectomy-wise. I can't tell you how good it is not to have horrible heavy heavy periods every again! I considered endometrial ablation too, but it turned out my uterus was very inflamed anyway, so who knows how ablation would have worked.
I know another lady who had ablation and loves the results—she doesn't have CD.
IUD is another option to consider. (Mirena).
Good luck!
Posted 8/26/2011 7:41 PM (GMT 0)

Thank you all for all the feedback.  I little more info was requested so I will fill in:

My symptoms have been mainly outrageous heavy and long flow for about a year and a half.  The cramping was not so much of an issue.  We played around with several solutions.  I had the - oh my, the name is escaping me, but it was a T or Y shape insert into the uterus for BC.  Well. . . my body spit it back out within a few days.  We now think that the uterus was just to big to hold it.

 

I tried several different BC pills and we have now found one that works the best.  I am like clockwork on when I will start . . but the length varies.  Anywhere from 10-15 day usually.  With approximately nine of those days being horribly heavy and with huge clots.  The past three months I have had to miss one or two days from work - either due to the heavy flow - or the horrible cramps.  These began about four months ago.  I actually think there is only about a two day period when they are at their worst.  But then again I think I still maintain a fairly high tolerance for pain (as we all do) from the 13 1/2 years I was active with symptoms.

 

Due to this last round of missing work I became concerned after feeling "achy" most every day in the lower abdomen and returned to the OB.  She took a biopsy (non cancer) and measured.  My uterus is at 14 1/2 cm.  UGH.  I consulted a surgeon - the surgeon says that the uterus is to large to remove in any other fashion than to have an open surgery with an incision from the belly button down.  (would matched the other scar that runs from my belly button to almost sternum).

 

I returned to the OB for consultation and asked that she consult my Gastroenterologist.  The OB called me the day I posted the first time.  She stated that the Gastroenterologist stated that the best time would be when I was not "in a flare" and to have "minimal manipulation" of the intestine, but that I had a high likelihood (as did anyone) of becoming symptomatic again after surgery.

 

So I immediately began my efforts to research on line and see what others out there in my shoes had been doing and what their experiences have been.  I have to admit that I am terrified.  I have been six years symptom free and what I fear more than anything is for it to become active again.

 

You have given me several things to think about and look into.  Please continue to share as ideas and suggestions pop in your head. 

 

I am going to go in and visit with the Gastroenterologist and get their input first hand.  I am going to go back to the OB and give her some of the feedback received here.  What it seems that no one can tell me is if by waiting am I just prolonging the inevitable and if I wait am I making the risk higher?

 

Currently all I am on is 150 mg of Imuran, Slo Fe and a Rx strength fiber. 

 

Posted 8/27/2011 3:36 PM (GMT 0)
Hi Sassy,
I am in a similar situation. about a year and a half ago they discovered a large fibroid (7cm at that time) and several small fibroids in my uterus. That fibroid has now grown to 12 cms and I have multiple other fibroids. about a year ago I had the mirena inserted (IUD) and it has completely stopped the extremely heavy flow and cramps - that has been a blessing! I am now no longer anemic for the first time in my life and don't get typical menstrual cramps anymore.
The down side now is that my fibroids keep growing and I feel like I'm getting backed into a corner for a hysterectomy. I don't have heavy bleeding since the mirena, but I do have almost daily spotting and a frequent pain coming from my groin and going down my left leg ever since it was inserted a year ago (my gynecologist said the leg pain "couldn't be explained and just shrugged his shoulders). Starting about 2 months ago I started having daily "dribbles" (incontinence) and I am thinking my uterus has gotten so heavy it is sitting on my bladder.
They gyno only offered me 3 choices 1) a medication to put me into menopause temporarily to shrink the fibroid (but he said I could only go on it for 3 months and then the fibroid could just grow back anyway 2) ablation - cutting off the blood supply, but he didn't recommend it because he has had a lot of women who have had chronic severe on going pain afterwards or 3) hysterectomy (he said due to the location and size of my fibroid they couldn't just take out the fibroid they would have to remove the whole uterus. None of the options are appealing, and sometimes I wonder if being on remicade has somehow made my fibroids go out of control, but who knows - no research on that. I am young for a hysterectomy (36 years old) and I know having one increases your risk of heart disease (because of the loss of estrogen) and I have severe heart disease in my family, so the thought scares me.
So, I have gone back to my GP about the incontinence and wanted to rule out any other causes for it (i.e. some kind of bladder problem). she has referred me to a different gynecologist to investigate.
In the meantime, I made an appt with a Naturopathic doctor to explore if there are any treatments I can do to shrink the fibroid naturally (there is some research that losing weight and reducing the estrogen in your body can help). I'll keep you posted.
I also fear how it will or won't affect crohns.
Sigh, I'm sorry to hear you are going through something similar. I feel stuck between a rock and a hard place (fibroid?) ha, ha. But really, I am feeling a bit at a loss. It would be helpful to keep each other aware of our information and journeys!
Take care!
Posted 8/27/2011 3:59 PM (GMT 0)
I had albation done instead in 09'. I don't heal well and was on large doses of steroids at the time with the disease active. I think it is a good alternative. I am 40, and I get a period every once in awhile. I am also considered early menopausal as well which is not uncommon with autoimmune disease suffers. The last ultrasound and biopsy I had done they said my uterus lining did not grow back right but was noncancerous. I may still have to have a hysterectomy eventually. My sister in law had a partial and did well with the procedure.

Cindy
Posted 8/27/2011 4:17 PM (GMT 0)
Hi Blueberrydecaf

Have to ask you: Are they planning to take your ovaries to? It´s them, not your uterus that produces the estrogen.
And if they are then you can get estrogensupplement either in form of tabletts or in plasters.

Sassy01 and Blueberrydecaf:
I´m sure that in time you will find the proper thing to do, and then feel confident about it.
Wish you good luck and strength in your decision-making.

"Abroad"
Posted 8/27/2011 9:56 PM (GMT 0)

Thank you all so much for sharing your lives with me.  It is nice to know I am not in this alone.  I will keep you posted as I attempt to get more answers from the doctors.  Please continue to share anything you think will be helpful.

Sandy

Posted 8/27/2011 10:24 PM (GMT 0)
My doctor was apprehensive about me having any major surgery and disturbing my bowels..I had my gall bladder taken out the old fashion way, and I did not heal well and went into a major flare. Albation you can have it done on a Friday and be back to work the following week. A hysterectomy is usually at least five weeks of down time..Chronies are known for fibroids and endometriosis..I was having severe bleeding, cramps, and flares during my cycle..
Posted 8/31/2011 8:08 AM (GMT 0)
Sassy so glad you asked!
I am 36 and had my hysterectomy in February! Every month I woukd flare from my cycles and the pain was just pure evil! Best thing I ever did!
Posted 8/31/2011 1:11 PM (GMT 0)
Sassy -

I had an ablation probably 10 years ago for fibroids. It worked like a charm for me. I started menopause at age 50 and it has been a normal progression (except for Horrible hot flashes).

My OB/GYN at the time was scared to death to do any surgery (I had 2 exploratories with a bowel resection, a fistulaectomy, a C-section and surgery to get of adhesions prior to the ablation). It was the best thing I ever did - outpatient, very easy, and took care of my problem for about 4 years, then I went on Seasonal (3 month BC which I took year-round without a break to stop the sporadic bleeding). When I went off Seasonal at age 50 to see where I was, I went immediately into menopause.

Sudsmom
Posted 8/31/2011 6:43 PM (GMT 0)

My doctor was the same way just not willing to do any unnecessary surgeries and disturb my intestines along with being on steroids..The intestinal & gall bladder surgery in 2004 was horrible! With the albation, I do know I was injected with steroids before I was put under. I was on antibiotics before and after. I just had ingrown toe nail surgery done that took twice as long to heal up..

Cindy

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