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8 replies

Advice from other people with J Pouch

TheaTheaMember
Hi my name is Thea,I'm 40 and the mother of 2 boys 17 and 11 and I have UC or I did really bad back in 2006. In January 2008 I had a complete colectomy with an ileostomy bag. My surgeon also wanted me to lose a ton of weight including the extra 50 Lbs I aquired from the year and a half on prednisone, in December 2008 I had a Sleeve Gastrectomy done to my stomach which allowed me to lose 75 Lbs and thats all, just completly stopped losing after the 1st year. Long story short I did everything possible to continue to lose weight to make my surgeon happy but it was never enough for him. He screwed with my mind and my life for 4 years. I found another surgeon who was more than happy to do my reversal and reconnect. I just had this done this summer July and August I was in the hospital, I had my J Pouch created and went home in a week then was back the next day because my stoma was reverting back inside,this was a complete and total nightmare, I lived like that for 3 weeks and had an early reconnect. Since I have been home, its been a little over 3 months and I am suffering tremendously. My nutrition is a complete joke, no dairy no fruit, vegetables whole wheats etc basicaly anything good for you is bad for me. I have a double wammie because of the sleeve, they took most of my stomach away including the part that creates the acids to help break down the foods, I feel like a recycling machine (just my little humor, gotta have it or I will go insane. My bum is so sore everyday sitting, standing, walking Im always burning, itching, and irritated, every cream and ointment that exists I have, the only one that doesn't hurt is A & D ointment, I'm still wearing depends to bed and waking up most nights in discomfort going to the bathroom constantly or waking up fully loaded. Has this happened to anyone else? Is this a normal part of the healing process? I also have to stretch my butt hole everyday with a tool my ostemy nurse gave me, which I gotta say is miserable. I leak I can't find a happy medium, If I get one day a week with out discomfort its a miracle. This is putting a big damper on my life, I'm almost thinking I made a mistake and should have kept the miserable bag. Help here in MASS, any advice or just someone to understand what I'm going through is appreciated... Sorry if I rambled.
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J JeffDCMember
Thea, that is a double whammy-you're right. Tht will make nutrition a lot more of a challenge.

With your take down being three months ago, your body is still getting used to what was done to it. This takes time.

The tool you were given is, methinks, a dilator, used to help prevent a stricture. This is a narrowing of the jpouch that will drive you crazy-lots of repeat back-to-back toilet trips with little output. Very frustrating on top of everything else we go through.

Keep doing that dilation, although it hurts like the dickens once you hit the stricture. But the results of not having the stricture will be worth it, although it can come and go whenever it wants.

I like your knowing how to keep a sense of humor-we all need one.

Things will get better, but slowly.

I wish I could be more helpful on the nutrition side, but the best advice I can give on that is to listen to your body, and act accordingly. Maybe keeping a food diary would help, listing the results of what you ate, the good, bad and the yucky.
R RLCMember
Thea -
What you are experiencing believe it or not is the process of healing. This process just takes time and everyone is different. I am 7 months from takedown and every day is different. I certainly am much better than I was at 3 weeks out. You have to be very patient and certainly keep the humor. Like Jeff said things will get better but it is a slow process.

Roberta
TheaTheaMember
I'm having daily irritation, burning and discomfort in the anal area but inside on the very end, if that makes any sense? I'm always uncomfortable, can't sit long or stand long or walk around that long because I'm always in pain. I have every ointment out there and they all burn my skin and make it worse,I sit on a blow up square from the hospital, thank goodness for that. I guess I just didn't realize it was going to be such a long healing process. I leak and still wear a depends to bed everynight because I do still have accidents at night if I'm in a deep enough sleep or I wake to a burning un comfortable feeling which is also sign for I need to go to the bathroom.
TE MarieTE MarieMember
I'm sorry you are going through all of this. I had 65 lbs of prednisone weight plus was overweight before I gained that and my surgeon said nothing about loosing it before the surgeries. I lost the weight after the surgeries as was having a rough time too. So you might loose more than you want.

I worried about the nutrition too so sought advice from a nutritionist. I use PlantFusion protein drink powder which provides 43% of the daily protein requirement. It is ok for everyone with food allergies, lactose, soy, nut, gluten etc free. 125 calories a serving. I make fruit smoothies with frozen strawberries and/or blueberries and a banana with ice and sometimes coconut water or juice in a super blender.

I think you could try it first, or something like it, and then add some fruit. I also eat Greek Yogurt which has 28% of the daily protein requirement. If you can just eat a small amount at a time you can store these in the refrigrator. The strawberry seeds and sometimes the blueberry skin if not pulverized enough do go straight through me but the rest doesn't and it doesn't hurt me. If you want to try the PlantFusion you can go to their website and enter your zip code and it will tell you where to purchase it locally. It is also available at Amazon.

Do they have you taking fiber like Metamucil and Imodium to slow your system down?

I don't have to use that tool so feel for you there. I had no idea when they said it would take a year to recover that this is what they meant either. It can take longer than a year to but it gradually gets better. If you look back and compare how you are doing to the last month it is better as sometimes it feels like we are going a step forward and 2 backwards.

Also, if you don't have a bidet, I suggest you get a bidet sprayer like I use. I never really got rid of my butt burn until I got that. For $50 I got a kit from Diabetes and More. My husband installed it in 10 minutes, think kitchen sprayer. It attaches into the water as it comes into the toilet and I use it to spray clean my rear every time I go. I didn't believe it but Charmin ultra soft or ultra strong are the only TP I use. I take it with me to visit my family or stay anywhere but home. I pat dry after the spray cleaning.

Take care and I hope some of our suggestions help.
Last edited by TE Marie
NewPouchMikeNewPouchMikeMember
Thea, it was 6 months after takedown for me before I finally started to feel pretty confident it was going to be ok............
I had horrible burn...and lack of control etc....

A couple thoughts for you...

1)Try doing most of your eating early in the day. Eat big breakfast. Potatoes and pancakes were great for me (and still are). Thank god for potatoes. I did (and do) well with either baked, mashed, hashbrowns, homefries...even french fries...... They bulked up stool and they didn't seem to burn. Pancakes and waffles good too. I did and do well with eggs and bacon for protein. If you can have most of your eating done by mid afternoon it will make your nights better.

2)Also, give this a try "maybe" it will help you as much as me for soothing the awful burn and pain. Put a big tub of Noxema Deep Cleansing Cream in shower and use it liberally when you are in pain. That cooling of the cleansing cream is super soothing for me. It got me through those awful months and I still use it every day.

good luck.... feel free to ask questions... I have ZERO medical training but happy to share what I have picked up from school of hard knocks the last couple years.....
Last edited by NewPouchMike
skn69skn69Member
Thea,
With the sleeve surgery you may have problems eating carbs in large quantities (or any quantities at all) so you may want to make yourself chicken meat balls with rice inside them to give yourself an easy and digestible fast food...it works with ground fish too...just mix some cooked rice with the ground chicken or fish and an egg and cook or bake in your favorite sauce (tomato may be too acidic in the begining) but yoghurt based sauces are pouch friendly...then you can easily dose both your carb and protien ration for your sleeve and your pouch...you may also want to invest in a good blender or other juicer or a machine that does both (won't mention names here)...the more you pre chop or blend your food the easier they will go through your new digestive plumbing...
For the butt burn a mild liquid glycerine soap and warm water was always the best for me (I used Pear's soap...sorry for the name naming)...I would mix it up in a spray bottle using a tsp of soap to a bottle of warm water and spray my tender parts...then let drip dry or used a very soft cloth like micro fiber...my dad used to get me a zinc-oxide cream that really worked but was very thick and sticky (white too)....it was very effective through difficult to clean off...but excellent in extreme cases like yours.
Keep asking questions and we will all do the best to answer you...hope that some of this helps
Sharon

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