had jpouch in 1998 in 2004 had to have intestinal membrane removed as it was choking off my small intestine, in 2010 had to have surgery again to remove obstruction where the temporary ostomy was . Now 2019 having many issues with scar tissue in the same small intestine where the reversal is, Diet has been getting stricter and stricter, no cheese , salads and veggies for years now. Now last 8 months NO breads only lactose free ice creams and grilled fish / eggs, no hard ends though as it blocks me fast. The Surgeon says no more surgeries unless its emergency as the tissue gets worse every time. Taking plenty of vitamins but I need a Dietitian that knows how to deal with this type scar tissue , And no way will high FIBER work, it blocks me quickly. Any one else has these issues after Jpouching for years. fasting in Alabama awaiting for technology to fix me before i shrink to nothing.
I have an old j-pouch from around 1996. I've had several unavoidable surgeries- obstruction that would not resolve followed by ventral hernia (incision site), strictured small intestine that was causing chronic small bowel obstructions (it was the size of a charging cord, I was on a milkshake consistency diet for a while). I have adhesions and am very careful with what I eat, but I do eat bread, not whole wheat.
Can you add a protein, nutrition drink to keep your weight up? Also, I eat very small amounts. I try not to drink with my meal so my stomach has time to digest my food, after 20 minutes I will drink. My surgeon suggested this and it seems to help. My surgeon also believes in keeping everything loose rather than trying to firm it up. I put a small amount of Miralax in juice at night or drink Plumsmart juice. Our pouches work with gravity so things need to come out easily. I don't have this quite figured out yet as sometimes I give myself diarrhea.
I am pursuing physical therapy to help break up adhesions. Surgeons don't really believe in it but mine supported me to try it. I enjoy it and am hopeful. PT makes me feel very relaxed and it does not hurt. Time will tell if I go longer periods without obstructive symptoms.
Thanks Marge, im drinking ensure plus to keep my weight up but lost 20 lbs already and need to be at 190 , at 217 now . Im thinking weight loss will help
This might be a little out there but agree about the PT!!!! particularly castor oil packs. Changed my entire belly (for better). I was having problems with conceiving because of scar tissue. We ended up doing IVF, and got loads of eggs. Prior to inserting embryos I went to an "internal soft tissue physio therapist" to do work on my (bountiful) scar tissue. SHE WORKED WONDERS!!! my abdomen used to be very hard and full of "knots" and also extremely painful areas 9that I had gotten used to and thought was normal). She told me later that the first time she felt my stomach she thought I would never have a baby because I had no room for one, it was all so tight. She did a lot of Castor Oil Packs (soak a cloth in castor oil, lay on abdomen, put plastic over, put a towel over as its messy and will stain, then a hot water bottle or heating pad. Leave on for about 30 mins. then massage your intestines, woking from the outer edges toward your belly button, about 30 times each spot . think of a clock, 12 being your pelvis. Work12, 3, 9 in towards the belly. Then also massage into any scars you find). I saw her about 2x month for 4 months and did the castor packs 3x a week on myself. she completely changed the integrity of my abdomen. It became soft and free of painful areas in a way I did not know was possible (after nearly 15 years post j-pouch and another emergency bowel resection). I got pregnant, had a healthy baby girl. I still do castor packs regularly and swear they are a game changer. Massage those old scars!!!! I am currently dealing with a stricture that I think has been around for many many years, but i started doing the castor packs again and will do them for the rest of my life to help the scar tissue. The scar I have that runs from belly button to pubic used to feel so hard, and especially the spot under my ileostomy scar... now they are so soft! It's amazing.
Jenners-thank you this sounds very hopeful. I am seeing her today and will tell her about the castor oils packs.
Great! FYI, surgeons and doctors might be like "yeah, that does nothing, but it can't hurt!" I would try for a month or two on your own and see if you notice a difference! very easy, nice, and won't cause any problems!