anyone had a partial hysterectomy with a j pouch

[tracyq1969]

hi, i am 40 years old and i had a j pouch for ulcerative colitis 15 years ago and have just been told i need a parcial hysterectomy as i have a large endometrioma {cyst} attatch itself to my pouch and also have very bad endometriosis,i was just wondering if anyone out there has had a partial hysterectomy with a j pouch and if they got lots of side effects after the surgery such as the weight gain etc any help or info would be greatly appreciated as i do not know anyone with a pouch or uc or anyone who can help me at all.thanks.

[springyes]

They also think suspect endometriosis which I have never had trouble conceiving 2 children or bad periods.  The gastro thinks it is adhesions from bowel surgery that shrink over time and kink off the bowel.  Nothing they can do for adhesions because more surgery means more adhesions.

[springyes]

Hey Tracy, I too am in the same boat with doctors and not knowing alot about what's going on.  I had a 5 cm hemorrhagic cyst on my left ovary 7 months ago that finally broke at the 1st of August.  I have had so much trouble with my stomach since that they don't know what they are talking about.  I too have ulcerative colitis and lost a large part of my bowel in 2002 never had trouble until now.  I bounce from gyno to gastro dr and no one seems to know much.  Us girls have to stick together.  Feel free to ask me any questions and I'm sure we could learn alot from one another.

[Patty5000]

I too am facing a hysterectomy 12 years after my 3 colon removal surgeries.  Have you had yours yet?  They are planning mine for September 15,10.  My gastro surgeon and ob surgeon and a bladder surgeon will be there also.  I am glad my ob wants to have all of these people there as I think it will make it go alot better.  I am still nervous and would like to speak to someone who has had this completed.

[tracyq1969]

hi stephy sorry to hear about your trouble concieving i know how you feel,i had my eldest whos now 20 when i was 20 and the doctors think thats what started my u c off ,i had him at 25 weeks and i was ill with my bowel all that time,i then met my current partner 10 years ago and i had a lot of trouble trying to get pregnant then i was told that i would need i v f as my tubes were no good as i got peritonitis when i had my bowel removed 6 years before and it caused the infection to spread all over my pelvis and tubes and i would never be able to have any more kids,but after 18months i suddenly became pregnant with my son who is now 7 and then my daughter who is now 3 but i have to admit it was the worst 8 and a half months both times i was in constant pain with my stomach and pouch and at 36 weeks needed them both delivering as i started to lose water and the pain was unbearable,i also had to have c sections because of the strain it puts on your spinchter muscles when you have to push people have had normal births but its not advisable when your muscles will weaken and you could become incontinent,but all the pain i went through was worth it for my kids and even though at 40 im too old to do it again i wouldnt change anything,i think you may be having problems getting pregnant for various reasons the 1st is the right days which is important and also stess that you cant get pregnant will make it harder my advice is see your g p if you have been trying over a year and ask to be refered to a gynacologist who will do some test to make sure nothing else is going on in there and mention to your surgeon who you see for your bowel they can also run tests but more importantly stop worrying thats when these things happen ,if you need to know anything else just ask.

[Stephy25]

Hi Tracy,
I have a couple questions for you, I am 25 and trying to concieve. I had a J-Pouche done 18-17 years ago when I was a yound girl, and I have been unsuccessful at concieving, my parents were told at the time that I may not be able to, but I see in your post you have two youngsters, did you have trouble concieving? Did you have to have a C-Section? I'm really nervous that I may be infertile. Any Suggestions?

[TrudieC]

Too bad immodium doesn't work for you.  It has been a godsend for me.  Your diet can help.  When it is too active reduce your intake of any gas producing foods like raw vegetables and fruits, bran, whole grains,eliminate sugar and reduce caffiene.  Increase your intake of oats, rice, smooth apple sauce and marshmallows.  These will all bulk your stool and slow things down.  Some people get relief by eliminating dairy and/or gluten as well.

Once you are under control slowly increase the fiber in your diet - beans, raw veggies/fruits, bran, etc. but do it very slowly.  Once your body is used to it it can really help to reduce your stool frequency.

To help with your pain until surgery you might want to work on your breathing techniques (it does help), use heat (bath or heating pad) and I found drinking Earl Grey tea really relaxed me and reduced pain (the bergamot is the key - it helps my migraines too).  Good luck with everything.

[tracyq1969]

hope your right about the weight gain but i think getting rid of this pain is gonna be better im taking targinact {oxycodone} at moment as i cant take anti inflammitarries or seizure medication as my pouch seems to dictate to me what i can and cant have and i really wish i could take it easy but ive 2 young children as well,do you know of any other pain killers that work well that the pouch doesnt seem to have a problem with ,my doctors just say theres nothing else you have to see the pain doctor which is not an answer,you have to wait for appointments,i dont know about your doctors but here they seem to know nothing about pouches or even colitis,i dont take anything for slowing it down as it just gives me bad cramps like the codiene and imodium and lomotil is there anything else that might work that you know of.thanks.

[TrudieC]

With only one ovary being taken out the other one will kick in within a few months and you will avoid the traditional weight gain with menopause.  Good luck and remember to really take it easy afterwards.  You need to put yourself first and take the time to heal.

[tracyq1969]

thanks for answering my question i have the same grapefruit sized cyst hence the parcial hysterectomy they are just taking one of my overies ad im not ready for the change just yet been only 40 my doctors think my organs are stuck together as well due to all my surgeries and im in so much pain they arent sure if its the cyst resting on my pouch and bladder or endometriosis that they say i have also got im having a cancer surgeon do the op cos they said hes the best qualified for surgeries as invasive as this,arent we lucky,anyway thanks again for the advice.

[TrudieC]

I have had issues with weight gain (due to inactive thyroid plus all the prednisone before my J-Pouch 16 years ago) for the last 13 years.  I had a grapefruit sized mass on my ovary 2 years ago and they were nervous about operating because of the pouch.  My gyn took in a general surgeon in case my pouch was involved or compromised during the surgery.  Due to the risk with this surgery I asked them to do a complete hysterectomy so they wouldn't have to go in again should I get another cyst and I also had a fibroid which was causing me to lose too much blood.  It ended up that they only took the ovary, tube and cyst.  All my organs were glued together from the adhesions from my previous surgeries and they were worried about hurting things.  I was very disappointed but did feel so much better after the surgery.  

I would insist on having a general surgeon involved as well.  Are they taking your ovaries?  If so talk to your doctor about hormone replacement if that is something you think you will need.  The hysterectomy forum here should be able to help you in this area.  Good luck.