Community Forum

I have had Crohn's for a long time now, years ago even had a resection. Have been in remission for the past 14 years and now it's back and bad! They are telling me I need a colostomy bag which makes fear run down my spine. I love my husband very much and am afraid this will end my intimate life totally. I can't even imagine him having to see me like that. I have drainage tubes now and I cry when someone has to help me with them. Please someone tell me how the bag has affected you. Good and Bad!

 Reply posted for WONDERWOMAN.

I have had an ileostomy for 3 years, yes my life changed but if you have a supportive loving husband he will accept it. If he accepts your drainage tubes, he will accept a pouch. Mine is a high output one since it's in the small bowel and not large. You might not have to empty or irrigate as often.  Your intimite life will change but you will FEEL better too so that should improve things also. As always with CD, it's not a cure but if it puts you in remission then that;s a huge plus!

I know it's been a while since your original post but I hope things are going okay and you feel better - Michelle

 Reply posted for WONDERWOMAN.

I suffered from UC for 3 1/2 and then started researching online. My husband was my donor and it has now been almost 4 months of being back to normal, having normal bowel movements - no gas, no cramps, no urgency, no blood, etc.  I am back to eating anything I want after 6 months on the Specific Carbohydrate Diet. I hav even been eating some things that are considered illegal on SCD, but with no problems.

If you would like to read my story and see links to other articles, email me.

Just don't give up thinking it is hopeless - there is another way. I am not on any drugs and completely symptom free.

These digestive issues are caused by a imbalance in the bacteria in your gut, most likely from antibiotic use or sometimes food poisoning.

Just google Fecal Transplant and you will find how it is being used to heal digestive issues - I had UC and it healed me.

Email me for a link to my blog - kwi_sky@yahoo.com

Teri

 Reply posted for BeezArtistries.

I know that everyone is like get a second opinion.  Agreed.  But my Crohns hit so fast and so hard that there was nothing left of my large intestine.  So try to save it, but i can tell you, i would rather have a high quality of life than spend the next 30 years being dissected bit by bit.  I Have never had another surgery since. 

 Reply posted for WONDERWOMAN.

It will be the best thing you will ever do.  And in time you will wonder why you didnt have it done sooner.  Someone told me that in the hospital, I looked at them in disbelief.  Seven years later, I could not agree more. There will be an adjustment time, finding out what appliances work better, (I hate to call it a bag).  THat can be a little  irritating. But as far as physical intimacy, it will change it some.  Is it over?  NO WAY!  I am more active now than ever.  AND I just got remarried to a gorgeous husband, that finds me sexy.  I do things for myself to make me feel pretty, that is VERY important.  Also lately i have found these things that go around the waste, that help minimize the inconvenience.  And also with a colostomy that have a cap you can put on it if you irrigate, so it as you dont have much there.  So lately i have taken up to using those wraps around my waist and put a pretty thing over top.   And no you are not alone at all.  Believe me, i was 21 and had  one.  I have just learn to adjust.  But it was better than having accidents, having blood, getting sick,  and everything else.

 Reply posted for WONDERWOMAN.

I agree with the person who suggested your getting other professional opinions and wonder if you have done so already (it's more than 2 1/2 months since you posted). I have no idea how old you are or what your life is like but I can tell you that my daughter (who was single at the time) had a pouch for more than 4 months between her surgeries.  While she prays never to need one in the future she did quite well with it.  At age 25 she even dated successfully.  I think most men are alot more comfortable with bowel issues than women are.  

 Reply posted for WONDERWOMAN.

WW, I, too, am very sorry and urge you to get 2nd and 3rd opinions.  I have Crohn's as did my older brother, who had a bag put on and told me to never ever allow anyone do that to me!!  He was adamant about it.  His was an emergency surgery and he had no choice in the matter.  So, please be careful.
Take care!

 Reply posted for WONDERWOMAN.

WW, I am so sorry.  I don't have any experience with this, but I will tell you this:  anything that requires that drastic of a measure requires a second opinion.
If your body can stay in remission for 14 years, then it can do it again.  Please try speaking to another professional and getting guidance that will work for you.
Good Luck!!