Stenosis and how it evolves

[PsychoJane]

Hi all!
For those of you who have dealt with stenosis, I would have a question regarding this as my mother is possibly enjoying this as a manifestation of her crohn. I have not experimented them yet (and hope I won't have to, fistula are enough) so I don't exactly know what to suggest her.

First of, is dilatation somewhat worth a try for those of you who went under that procedure.

Secondly, I know stenosis don't go away on their own, but do they get worse and better through time (I guess as a result of the general inflammation that can be present or absent?)?

How long after you found out that you had stenosis did you have to get surgery or intervention other than medication? Can you handle the situation for a while by being extremely careful of what you eat (let say almost liquid diet I would assume??)

Thank you!

 

[ashlygt]

I had stenosis (stricture in rectum). The only thing that helped was regular dilations (every 3 months for me - some people can go further apart). I also took miralax (2 doses) every night so that everything would be loose enough to pass through. I could not pass formed stool even with getting dilations. I eventually had to have permanent ostomy and rectum removal surgery - aka abdominal perineal resection. Getting dilations every three months was a lot to deal with. After every procedure i would run a fever for about three days. It was painful every time I went to the bathroom and for hours afterwards, and I had lots of blood from the active disease in the rectum. Also at times I still would not be able to use the bathroom even with loose stool.

 

[PsychoJane]

Thanks for your answer Ashlygt.
It must have been a lot to deal with... Do you consider that your surgery has allowed you to get your quality of life back and would you have done it earlier if you could have?

My mother still hasn't received a clear description of what she is dealing with, so far I'm "guessing" what she is facing from her frequent blockage and the fact she said they saw narrowing during her ultrasound... she was unsure of where it was located but probably in her SI...

I know dilatation can be attempted, but I would assume they can't proceed with dilatation at that level too often as it seems less accessible (well... my assumption at the least).

 

[kiny]

If stenosis because of fibrosis is reversible is a topic of hot debate because it relates to many diseases. Lungs, kidneys, etc.

Fibrosis is caused by abnormal wound healing, some argue it is partly reversible in the early stages, because you get cell turnover, new cells replace the excessive collagen.

But because wound healing is so complex there is no good way currently to reverse it, some people suggest substances that block transforming growth factor, it would slow down the healing, but that's dangerous, because people with not enough healing and capacity to create collagen, will get excessive bleeding, meaning the wound will take much longer to close.

 

[Rocking on]

I struggle hard with this. I usually undergo dilation procedures 4-5 times a year. I generally do not have a bad experience with the procedure. They put me out and I generally have no recollection of it. I dont have any pain afterwards.

It does appear to get better or worse without rhyme or reason. When I feel things getting too tight I usually up the prednisone and increase fluids - a lot. Grape juice seems to work well. Sometimes it gets better and i can avoid the dilation and sometimes it doesnt and i feel i just need to go in for the procedure. I judge it on how much pain I am having.

I also have a dilator...but let's just admit it's a dildo, lol. I do use it on occasion, but honestly it is extremely hard to bring myself to do it. I think if i used it regularly it might save me a trip to the doctor, but really, doing this to myself makes me very angry, and it is not fun.

 

[If*]

Hello, stenosis suggest a stricture or a narrowing. Is it of scar tissue or inflammation? Nothing can reverse scar tissue so the option would be to have it removed. If it is within the size and within range it could be stretched.
A narrowing can swell to the point that liquids can not pass and when that happens the bowel contents will most likely come back up.
Waves of pain like a squeezing are a good indicator and there is no comfortable position. The body is made to continue to work and the bowels will try to pass contents even with swelling and scar tissue. A blockage can usually be heard since silence in the abdominal area is highly suggestive. Do not let this go on without medical attention if it should occur. Another sign is increased watery bowel movements since often only small amounts pass at a time but the frequency increases or can stop all together.
Foods that tend to cause pain are nuts, popcorn, mushrooms, fruits and veg with skins left on, fiber cereals and crackers, etc. Some gentle foods (depending on how advanced the area is) applesauce, homemade soups with carrots, potatoes, and other soft well cooked veggies., mashed potatoes. Food should be well masticated.
There are several good liquid nutrition drinks. Boost, ensure and even Carnation instant breakfast can be tasty and mixed with non dairy liquids. Coconut water can be helpful for dehydration and doesn't have the horrid salt taste.
See a nutritionist, no matter if your weight is up or down since malnutrition can occur. A healthy body is a fighting body. Also ask about b12 being checked.
It can be a fine line from a partial blockage of a stricture to a full blockage. Your GI and surgeon is the best to listen to. Ask the surgeon if he/she operates on a bowel preserving option, meaning taking only the worst of the worst and the severely damaged. Often microscopic activity is left behind which is highly recommended since for now there is no cure and the least lost is the best in the long run.
We are each so individual.

Much peace. I pray for a cure for ALL of us.

 

[ashlygt]

Yes, my surgery did give me back my quality of life. It was very difficult at first though because I was dealing with having a permanent ostomy, which was body altering. I regretted having the surgery at first, but now I don't know how I would manage a normal everyday M-F job without my ostomy. You get used to the ostomy/learn to live with it. Your body will get on a schedule with it (especially since my ostomy is a colostomy not ileostomy, which has more frequent output). I have also had narrowing in my small intestine and have had surgery on that as well. The surgery on my small intestine was just a resection and was a walk in the park compared to getting my rectum removed and having a permanent ostomy.