Ladies help! Loosing my mind--RVF

U B Tough,

I use to take showers and looooong soaking baths. Every once in a while I would put calmoseptine on it...but even that did not help.

I have been on Remicade for 18 months and mine didn't close at all. Developed stricture, ended up with a colostomy, (could be temp but depends on how my Crohns is) and am now looking at RVF repair. Very concerned about having colorectal surgeon fix it. My friend had hers fixed by colorectal surgeon, they went thru rectum to repair and now she is incontinent. I have a May appointment with colorectal surgeon regarding repair but am hesitant.....

Please let me know how yours goes....

I hope you find some relief...

Clo

Well I think you are both tough! When my RVF returned that was the final straw. I was really sick and there are many other reason I was considering my final surgery but wasn't decided yet, still had hope something was going to work. When it opened I couldn't handle it and called my GI and said I need to see the CR surgeon now, I'm done!

Clo have you also gotten the opinion of a gynecologist about the repair? My GYNs practice does a lot of RVF surgical repairs, she was surprised when I saw her post surgery and my CR surgeon did it. She was also surprised at how well he did.

My CR surgeon did say initially he might have a gyno in my surgery due to the fistula. Then they did not. Not sure if bc 3 surgeons were already in there or why he decided to do it.

I do have to say removing my rectum, anus, getting sewn up and having my RVF surgically closed at that time worked well for me. My 1 year anniversary is tomorrow and still closed and no pain or issues.

Depending on your options clo for reconnection making it permanent might be an idea worth exploring.

UB I hope you get some help at your next appt. I don't know how you handle it. I'm more like you than the others on here. I absolutely couldn't stand my RVF, it broke me.

How many more weeks of the HB do you have?

The PG does present a challenge that most don't face. With that said it can be managed if you ran out of other options. The person I knew with pg and an ostomy had colon cancer so she got to the point of no choice. She has only had one pg outbreak in a few years but that one outbreak did take weekly appts with a wound and ostomy nurse for several months before it resolved. I wonder if you needed an ostomy if you could resume the IVIG?

Also wonder what options you would have for a temporary loop ileostomy to rest your rectum and sort of test run how you do?

TIES does sound like it could be an excellent option for someone in your position. I remember initially 8 patients maybe had it done so far?

I definitely wouldnt let the stigma or fear of intimacy with a bag be a reason not to do it. There are quite a few young ostomates that get their ostomy while single and date, marry, sleep around. I don't know what it is like to date with an ostomy but I will say my ostomy is more of an issue for me than my husband when it comes to intimacy.

Can you use any type of lidocaine cream? I know it's on the inside but that is what I used when I had the perianal fistula at its worst. It didn't usually last too long but it gave me a bit of a break. I'm so sorry you are going through this. You are extremely tough. The pain i had with my fistula was beyond description and at its worst I would feel like i was going to pass out from it so I can understand what a horrific time you must be having with this.

UB,

Hang in there.

I want to assure you that others feel that same way...we have those same thoughts. A temp Ostomy will surprise you. I wanted to hide when I got mine. I had assured everyone that I was fine with it, but inside I still had those thoughts. Frequently at first. Then I went to the grocery store. Such a simple thing. I remember I didn't have to run to their bathroom 3 or 4 times while there......it amazed me. Everytime I went out and did something I reclaimed a small piece of myself and my self esteem. Before I was embarrassed and ashamed because of the accidents or the fistulas having output. The Ostomy has helped me with that and with reclaiming my life. Try to focus on some positives. It helps with the uncertainty.

Clo

I agree with clo. I fought surgery for a long time. I couldn't imagine having an ostomy. Even when I had my resection surgery, first thing I said when I woke up is did they have to give me the bag? Turned out having the temporary ostomy was a blessing. I couldn't believe how good I felt and how easy leaving the house with no pain, no worry of accidents.

In my case having the temp ostomy showed me I could do it and it was worth it. Not everyone reacts this way. But if the surgeon thinks a temp ileostomy would it could be a good opportunity.

And if you don't need any other surgery just a diversion ostomy to let things heal it should be a much easier surgery to recover from. Before my colon perforated they were going to just do a loop ostomy for bowel rest, no cutting. So it would have been just the small incision where the ostomy is and a couple tiny laparoscopic incisions. They weren't going
Yo cut me open at all. Which makes for a much better recovery.

UB,

Please let us know how it goes.

I agree with the measuring. Have her mark a hole of the largest stoma she has seen then go home and put on your clothes and see where the stoma would be in relation to waistbands, buttons and zippers....standing , sitting, kneeling, bending over and laying down.

Clo

UB,

I read your post and giggled. (Sorry-the flopping visual was so.......one of my concerns. I thought I was the only one who thought of that....)

First off....if your bms are ok...they may not feel a stoma is for you....unless your RVF is getting worse and they want it to heal.

Next scars....I have them on my upper chest, my back and my neck. People are curious. If they ask I tell them about Crohns. Most people think Crohns is cramping or going to the bathroom several times a day. They have no idea. My objective is to make them realize how very serious Crohns is. Also if they know and someone is having our symptoms it might help that person. Now when I first started out I didn't want to tell anyone anything. If they asked I would say knife fight or gun fight and watch them run away. It wasn't until a friend pointed out how I might have the opportunity to help someone else by giving someone knowledge (and wouldn't I have liked to have had that information at the beginning?) that made me bury my embarrassment and reach out. That also freed me from worrying about who saw my scars...

The bag....my bag tucks right into my jeans. You can not see it. I wear different bags for different things. You do not have to wear one of those great big bags that hangs way down. They make different kinds and sizes. They make two piece pouches that allows you to change the type of bag you have on. The wafer stays on and different bags fit on it.They are amazing. They hold in smells...(m9 drops get rid of smell completely for me), they don't make alot of noise and you can't tell they are there. They make little tiny ones that are so flat it is amazing. You have to empty those little ones more so some people like to wear those great big ones. They also make these little tiny round circles that don't hold anything. I have a colostomy so I can use them, my friend has an ileo which is on a schedule so she can use them also-I have another ileo friend that uses the little baby size instead. If I want to go swimming, take a bath, or get frisky....I would use one of those little ones or the cap. For sleeping...I will use a larger one. Regardless....they are pretty flat....and if you wear a support garment with them you can't see them at all. Ballerina outfits can have support panels added so that you can't see them.

Signed on the dotted line.....unfortunately for some that really doesn't matter. Their spouse is a selfish shallow person that can not deal with the others issues. If you are dating and you have an emotional Connection only they can decide what they can or can't deal with. Better to know upfront rather than later. If they stay, know that at first there may be some awkward moments, and it will be as big of a deal as you make it. You will control the tone. You can develop work arounds if it bothers you to have someone see the small bag...use your imagination.

My husband tells me that when he sees the bag he sees something that saved the life of someone he loves. He is grateful we are still here and together. If a new person is with you they will see something that enabled you to be there with them.

I am older..in my 50s..so my views will be different than a person who is 20, 30 or even 40. Don't let this disease steal your self confidence. (Easier said I know) Don't base everything on your looks...you are more than that.

Funny story...young girlfriend (20s) married guy. She is very pretty. Works out, wears the right clothes and make up.... She knew he would never leave her she looked that good. He left her for a little, short, heavy set, average looking woman who he said "had a beautiful smile, open warm heart, who listened to him and made him laugh and feel special." The way people view you is largely impacted by the way you make them feel.

My bag is slightly higher then my belly button and comes down about 6 inches. It is flat. It is a smaller one. My ileo friend? In her 20s. Wears skinny jeans and these lacy support panties just in case... You can't see the outline of the bag (those legging look painted on too!) and when her shirt comes up you can only see that naughty lace and her raised eyebrow and grin. The guys flock to her.

Hang in there!

Clo

Thank you both for the detailed response.

I just got discharged from hospital with 2 setons. Couldn't stand the pain anymore. He left RVF alone. I feel so depressed with all this drainage.