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Stricture dilatation

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Posted 3/6/2008 3:33 PM (GMT 0)
Hi, Anyone here did balloon dilation? How was the outcome?

Thanks :-)

Posted 3/6/2008 3:40 PM (GMT 0)
Hi Krica:

I had a dilation. the surgeon was able to open a pinhole stricture to about 1/8 th inch and I was able to delay surgery for two more years. Though I had two hospitalizations for blockages in between. It's a relatively non invasive procedure (slight risk of perforation) so I would always give it a try before going the resection or stricturplasty route.
Posted 3/7/2008 1:24 AM (GMT 0)
Bellenstein:  Where was your stricture?

Posted 3/7/2008 1:35 PM (GMT 0)
Hi guys,

just thought i'd join in here. my GI told me on Weds that he wants to try balloon dilatation on me. i'm just a little nervous of what could go wrong. Maybe you could help me out here Belleenstein, i think from what i've been reading that you know a bit about this and your info and advice is always v helpful. I'm also going to be starting on both Entocort and Imuran for a few months before i get the appt for the dilatation, just to see if it helps at all. it's the first treatment i've ever been put on and i have no idea whether to expect any side affects. do you know whether there are side affects from either of these? any advice would be helpful and much appreciated.

thanks, Lila
Posted 3/7/2008 1:54 PM (GMT 0)
Hi Lila, i am on Imum 200 mg a day, i have on this drug about 3 years, i do not have any side effects. I do not know about entocort. What systoms do you have at moment?

In my case, it seems the narrowing did not get any better with this medication. But i do not have any systoms of disease activity, going to toilet 3 or 2 times a day, the inflamation is mild, but the stricture still there.

Let me know how it goes... On, monday i am doing flexible sigmoid exam, and i will see my doctor on 25th march. But my doctor mention to treat the strictures with endoscopic enema steroids. Maybe, that's  what i am going to do first.

 

Posted 3/7/2008 6:02 PM (GMT 0)
Hi LiLa:

My stricture was in the terminal ileum -- actually at the site of my first resection. It was not particularly successful because scar build up, at that point was pretty severe. Chances are your's is more inflammation than scarring. If you are planning to begin medication, do you know whether the plan is to wean you off entocort after the immuran kicks in? If so, you might want to wait until you are off entocort. Entocort is a steroid and it tends to thin tissue. That might make the dilatation a little more risky. You might want to give the drugs an opportunity to work on whatever inflammation is going on in there first, in any case. There are a couple of reasons for this. First you might find you don't need a dilatation if the narrowing is caused by active disease (inflammation and ulceration). Once the drugs kick in that narrowing might resolve as the inflammation dies down.

If there is scarring associated with the stricture from old episodes of inflammation, then the dilatation will probably work best if it is done when the bowel is not inflamed. There is a very modest risk of perforation during any colonoscopy and especially during a balloon dilatation, but that chance is reduced when the bowel is healthy. Again, these risks are very modest and, if your stricture is putting you at risk of obstruction, then that carries a risk too.
Posted 3/8/2008 1:16 PM (GMT 0)

Hi guys, thanks for the replies.

Krica, my symptoms are severe bloating which never eases, D in the morning (accompanied by pain) and throughout the day (less pain during the day) but it's getting more frequent as the weeks go by. I also have that distended feeling most of the time and my stomach makes very loud & embarrassing gurgling noises. Plus there's the tiredness that accompanies all of the above. I've never heard of endoscopic enema steroids, what are they exactly? I'm really hoping that the medication helps the stricture as i feel so bad taking time off work for all these hospital visits, and the last thing i want to be facing is another surgery. My boss would have a heart attack if i told her i needed a month off. Plus i really love my job and don't wanna risk losing it. Good to hear you have no side effects from the Imuran. Good luck on Monday, & keep us up to date on how you get on with your Doctor.

Belleenstein, they think the stricture is near the point of anastomosis from my first resection so it's either in part of what's left of the TI or else at the beginning of the large bowel. I was a little confused after seeing my GI because he was saying that it could very well be caused by scar tissue, and at the same time he was saying that it's very likely that it's inflammation (even though my bloods showed everything to be perfect and no sign of inflammation). But anyhow, yes i'm just taking the Entocort for 8 weeks then i will taper off it completely whilst i will keep taking the Imuran. Thanks for the tip about the tissue thinning, maybe i will ask my GI to wait a while before attempting the dilatation. It would be so amazing though if the medication worked and i didn't need the dilatation. I read one of your previous posts about how you were in denial about your condition. I think i am quite similar in that way. I can't even bring myself to tell my boss why i'm going to the hospital all the time, she just knows i have some sort of problem that's stomach related, and she just doesn't ask questions. But i find that no matter how much pain i might be in or whether i'm about to keel over from exhaustion, i will not give in to it and i keep going like nothing is wrong. I know this is not good for me but i can't imagine dealing with it any other way. I even avoid getting into relationships as firstly i am paranoid about my scar from the 1st resection and secondly i can never bring myself to tell guys about my condition, so ironically enough i end up being the one who breaks hearts. Only because i don't want to be the one to suffer rejection. Jeez i hate this disease so much. Sorry if i sound like a moaner, it just feels like life is passing me by sometimes and i'm letting it happen because of fear. Anyhow, i start my new meds today so i'll be crossing everything and praying that they help in some way. Thanks for the good advice........Lila

Posted 3/9/2008 6:51 PM (GMT 0)
LiLa: i spent a lot of years convinced that if i could fool everyone, then that was proof that my crohn's wasn't that bad. The joke was on me. I spent a lot of time and energy resisting being ill. I still have to remain consciously aware of my relationship with this disease because it is so easy to slip back into denial. Acceptance doesn't mean giving up. It means getting real. Maybe that accounts, in some measure, for the distance you are keeping from people who want to love you. I understand the motivation. I really really can empathize, but maybe you are at the point in your relationship with this disease that you could let someone else in. After all, you're here aren't you?

Hugs from the heart
Posted 3/10/2008 2:51 PM (GMT 0)
Hi Belleenstein,

Yes i understand what you are saying completely. Giving in to denial doesn't mean giving up. It's already a great feeling to have found this forum (which i believe i would be lost without) so i guess if i think about it - to share all of this with somebody who loves or cares about me could also make a huge difference. I'm 28 yrs old now so i should be able to come to terms with things at this stage in my life. Although i find it difficult to attempt going into detail about such an unpleasant illness i think i will come up with a simple way of explaining it until it's necessary to go into more detail. That might make the process slightly less daunting. Anyhow, thanks for your kind words. You're a fountain of knowledge!!

......Lila
Posted 3/21/2008 8:21 PM (GMT 0)
Lila,
My name is Christine and this my first post. I have had Crohn's Disease for the past 10 years, and I am now 28 years old. I was diagnosed in college and struggled with coming to terms with my illness. I only weighed 100 pounds when I was dianosed. I was concerned that others would think I was anorexic. I kept my condition to myself, and was in denial about it for years. I understand your struggle, but don't be afraid to let others in.

I have found that there are a lot of people that know about this disease. Most people I talk to have someone in their family, or a friend that has something similar. It would usually come up in conversation after a few dates. I didn't reallly drink alcohol, so I was always asked why. I would simply say I have a digestive condition and I need to watch what I eat.

I am now facing surgery. I have a stricture in my rectum and a bunch of procedures have been suggested. Many of them have been listed on these posts, balloon dialation, stricturplasty, or resection. I have two surgeons and my primary GI collaborating on what to do.

I am a little freaked out. I'll be honest. I have never had surgery, so I don't know what to expect. The posts have been helpful.

I am also concerned about my body image after surgery. I'll have a scar and I'm not sure how I feel about that.

I'm hoping for a decision soon because I have been in limbo for over a month.

Thanks for listening!

Christine
Posted 3/22/2008 11:49 PM (GMT 0)
Hi Christine, and welcome to the forum :-)

You will find info here on anything you need to know by reading through the posts (or by posting a question). It has been a godsend to me and i am more educated now about this disease than i ever have been in the last 10 yrs. And the fact that everybody on this forum is so friendly, helpful and understanding really helps too!

Thanks for your good advice about letting people in. I know it's me that's making it difficult to open up and it's something i need to sort out. I developed the disease at quite a young age - i believe i was about 11 yrs old when symptoms began and from the age of 11 - 19 it went undiagnosed by my doctor. So i know how you felt trying to study whilst being so ill. So my school yrs were extremely difficult - i couldn't take time off because according to my doctor there was nothing wrong with me apart from a touch of IBS. When in fact i was doubled over with pain every single day and was convinced i was dying from stomach cancer (i knew nothing about crohn's back then). It was only whilst having my appendix out at the age of 18 that they noticed the inflammation. Anyhow i had my first resection in 99' as none of the meds i tried were helping and things were getting out of control. My weight also stayed around 100lbs during the years before surgery. I'm at a healthy 123lbs now.

I am so sorry to hear you are facing surgery - i could be too if they find out that the problem is caused by scar tissue and not inflammation. I went into my first surgery without giving it much thought. Mostly because my symptoms were so bad that all i wanted was to feel somewhat normal again. I didn't really consider the complications or how i might feel about the scar. I was very lucky in that the surgery was quite successful and i had relief from the pain & D afterwards. I am not a vain person but i do feel that the scar has knocked my confidence a little. But maybe that's just because i don't tell people about my illness and if somebody sees my scar they are going ask questions.

I am just curious as to how you deal with the whole dating scene etc or are you in a relationship/married. You don't have to answer these questions if they are too personal. I have been in a couple of serious relationships but they have both been destructive because i'd chosen the completely wrong type of guys. But i've also known some really great guys who were interested in getting into a relationship and every time i ran a million miles just because i didn't want to face telling them about this disease. I know if a guy told me about it i would be fine, it''s just when it comes to me, i imagine they will be grossed out and run a mile. I can see how ridiculous it is but at the same time i have great difficulty coming to terms with telling people. I am a little envious as most people in this forum seem to be happily married or in relationships and have the suppport of great partners behind them. Whilst i feel like i will still be alone and living with lots of cats at the age of 80!!

Anyway i'm waffling a little, i think you should start a new post with your question about surgery of the rectum, what it involves, the risks, the after affects etc. My crohn's is in the Terminal Ileum so i can't really answer your question. I hope i haven't scared you with this long reply but i wish you success in making a decision about surgery and i hope you can find some answers on this forum.

..............LiLa

Posted 3/23/2008 11:25 AM (GMT 0)
I've had 2 balloon dilatations.

I stayed on all my meds throughout the procedures. I was on Entocort and azathioprine (imuran).

The first dilatation held for 7+ years. I just had the second one 1 month ago - the stricture was down to a pin hole. I'd obstructed a few times because of it. Rice will kill me.

Gabrielle
Posted 3/23/2008 5:39 PM (GMT 0)

Hi Gabrielle,

That's amazing that the balloon dilatation held for such a long time. That's as long or longer than surgery might hold! Were you having really bad bloating before you had it done. It seems that everything i eat at the moment is causing severe bloating. Even on the Entocort and Imuran. And if you did suffer bloating did it ease off after the dilatation?

Posted 3/23/2008 6:42 PM (GMT 0)
Will a dilitation be effective for scar tissue, or only inflammation?
Posted 3/24/2008 12:02 AM (GMT 0)
LiLa, I was obstructing all the time. I lost a lot of weight because all food equated to pain for me. Food = pain. I avoided it. I looked 12 months preggers my last obstruction.

K, a balloon dilatation IS for scar tissue. A stricture is scar tissue that has built up so much the 'hole' of your bowel is too narrow for food to pass through. Even with a dilatation, the scar tissue will continue to thicken up/stricture.

My gastro reckons that, on average, a stricture can be dilated about 3 times. I am thinking a strictureplasty would be the next thing to do = not cut it out.

Gabrielle
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