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Posted 6/13/2011 2:45 PM (GMT 0)
Hi this is my first time posting on a forum other then the one for Colitis but I was just recently told last week going to have to go through for J-pouch surgery. I am 100% fine with this and actually cannot wait to get it done, my life has been complete hell for some time now and i haven't really been able to live. All the medications failed and did practically nothing for me except cause side effects that were terrible. Luckily i have had lots of support and have had most of my questions already answered from searching this site, the one thing i am still concerned about though is my weight. In the past month i have lost over 30 pounds, dropping from 210 to just below 180. Im currently staying stable in and around 180 but i was just wondering if after the surgery I will lose more weight or if i will be able to start putting it back on at all?
Posted 6/13/2011 2:54 PM (GMT 0)
Hi,

I've been an unusual colitis patient in that I kept my weight stable throughout all the flare-ups. My doctor told me to maintain my weight, which is the upper end of normal, throughout the j-pouch surgeries (there will be 3). I think it's the final take-down surgery where they want you to have a tiny fat reserve, in case there are complications and they need to keep you on intra-veinous nutrition. The point is, they do not want you to become underweight at any point, because that can cause complications in itself.
So, you may lose a bit of weight with the first OP, assuming they will do your jpouch in two OP's. But so far everything I have heard is that people who lost weight during colitis and the first OP gained it all back, if not then then after the 2nd OP.

But other people who lost and gained will probably have more to say. I have been "pleasantly plump" no matter how sick I was, and didn't lose any weight at all after the first OP. Just stayed the same.

All the best,
Posted 6/13/2011 3:57 PM (GMT 0)
I was down to about 130-135 before my surgery .... I've put on 20-25 lbs now, fairly easily, and I weigh as much as I ever have (enough so that it's time to stop putting on weight). Thirty lbs in a month is a lot, you must be very sick.

I can't say what will happen for you, of course, but my docs treated it as a given that I'd start putting on weight when I was better, and that's what I did. It wasn't immediate -- had to get my appetite back and also at first most of the calories go to healing. But after a month or two, I started gaining.

You have to make sure you have a lot of protein at first -- some kind of supplemental shake is a good idea.

I have a permanent ileo, not a temporary one, but I don't think it's all that different in this regard.

This list is really helpful. Welcome, and do post whatever questions come up for you. Glad you're feeling clear about your next steps.
Posted 6/13/2011 4:25 PM (GMT 0)
In the ten days following surgery I lost 20 pounds. I was able to put half of that back on within 2 weeks or so of coming home. I am actually working on losing weight and that hasn't been an issue as long as I keep a strict eye on my diet and exercise.

Think of it like this: Once your initial surgery recovery has passed, you are going to be healthy! You will have to watch your diet in the early weeks from the standpoint of making sure the foods you eat will get along with the ostomy, but that gets easier and less restrictive as time passes. Once you are recovered, you can eat most anything within reason (the what not to eat varies a bit from person to person) and you will be able to eat more regular meals again. So, even if you drop weight you don't want to lose, you should be able to put it back on within a few months of being and feeling healthy again.
Posted 6/13/2011 4:38 PM (GMT 0)
I am 5'8 and I went from 132 to 107lbs in two weeks during my severe UC attack before surgery. I did manage to put on some weight in the month between that attack and surgery by drinking a gazillion Ensure Plus drinks. I entered surgery at 119lbs and did not lose more than a pound or so after the operation. Now 7 months post-op, I am at about 122lbs. Though I tried to put on weight before surgery so I would go into the operation strong, I didn't worry too much about trying to gain after the operation. I figured my body would eventually stabilize now that my colon was gone and once I was healed and I was able to eat normally again. That has been the case. The weight is very slowly coming back on. I am actually being mindful as I don't want my body to swing too much the other way now that I can eat everything. My pouch sticks wonderfully, my stoma functions beautifully, and I don't want to end up getting overweight and changing any of that.

Though I didn't work too hard to gain weight after the surgery, I ate a lot of protein to aid in my healing. Lots of protein whey powder shakes, fish and meat, Greek yogurt, eggs etc. I was eating between 60 and 100 grams of protein a day for about 10 weeks after the operation. I still try to eat a lot of protein, though I have eased off a little.

I think you are going to be pleased with your decision to go for the surgery. I had gotten to the point where I was so tired of feeling so weak and ill... I was excited for my surgery. I went for a permanent ileo instead, but am feeling amazing now that my colon is gone, my energy is back and NO MORE MEDS! As you, I found the side effects of the medications, especially Prednisone and Remicade, unbearable. I never even wanted to try Humira. I was done with drugs. Also, now I no longer worry about when the next flare is coming. Here is to taking a big step in getting your health back. Best wishes!

-Heidi
Posted 6/13/2011 4:49 PM (GMT 0)
Just out of curiosity do the pouch and stoma not work as well if you are over weight? Im far from over weight im at about 180 pounds and im just barely under 6 foot, but even still im a generally bigger person. After the surgery will it be beneficial for me to try and keep the weight off to make sure everything continues to work properly? Im thinking that if i can stay at the weight im at now without gaining/losing any more i should be good, or at least thats what i hope.
Posted 6/13/2011 4:54 PM (GMT 0)
As your weight changes, the fit of your appliance can change. Also, the stoma and how it relates to your body can change (how much it protudes, etc.). It can be difficult to get a secure fit with an appliance if you are overweight, but it's not impossible. I am still 30 pounds away from getting down to my goal weight, but I have had pretty good luck with appliances with just a few minor blips here and there. It's best to be at an "ideal" weight if you can, but people of all shapes and sizes live perfectly well with stomas.
Posted 6/13/2011 5:07 PM (GMT 0)
Chris, I was just editing and adding a few lines to my last post when you wrote:)

I have heard that pouches may not stick as well with skin folds and that stomas can be more likely to retract if someone is overweight. Also, if someone finds a system that works well and then gains a bunch of weight, the way that system works may change causing the need to switch. The weight gain would probably have to be pretty drastic for this. There is also a great risk of peristomal hernias when folks are overweight.

I think being an normal, healthy weight after surgery (which it sounds like you are) is good. So whatever that means for your body type/build would be the best. If someone is severely underweight after surgery it wouldn't be good to stay there! But, if someone is within a healthy weight after surgery, there is no reason to pack on the pounds. My surgeon had just said that some people, once they feel the ability to eat everything again after being cured of UC, gain a lot of weight and have some problems. He also said some people change their lifestyle and become too sedentary after surgery which leads to the same thing.
Posted 6/13/2011 5:50 PM (GMT 0)
You will lose some weight after surgery. Figure you will be in the hospital about a week and won't be eating much. So there is about 10 pounds right there I bet. Was for me anyway. The entire time I had my ileo I did not gain an ounce. And I was eating well once I felt better. As soon as I had my take down surgery, I was able to put all the wieght I lost from being sick and having surgery back on. Now I am back at my healthy weight.

Best wishes to you. I know it's tough facing surgery, but you will be so much better when it's all over. I am really happy with my results. :)
Posted 6/13/2011 7:09 PM (GMT 0)
I was down to 92 lbs the day of my surgery (at 5'6), and thankfully I didn't lose any more. I stayed the same the week of surgery and have been steadily gaining ever since! Now I'm trying to stop gaining! I'm at about 130. It took me about a year to get there.
Posted 6/13/2011 7:32 PM (GMT 0)
I am not overweight, but my belly is soft now. I can't swim yet because of my butt wound, and that's my main exercise that helps that. The nurse switched me to a convex wafer and it sticks much better than the flat ones. I would not have thought to try this on my own, as my stoma is not at all retracted and I'm not fat .... but it helped a lot.
Posted 6/14/2011 4:02 PM (GMT 0)
Thanks everyone for the feedback i really appreciate it, im really anxious to get this surgery over and done with it feels like ive been sick forever, I just want to finally be on the road to recovery!
Posted 6/14/2011 4:34 PM (GMT 0)
Hey Chris, I just got my surgery last Wednesday!  I am 180 pounds and 5'3".  They said my colon was 7 or 8 pounds but after all that and not eating at the hospital much, I still weigh the same.  HA go figure.  I will tell you, I am so so so glad I had the surgery.  I hurt like hell right now but getting better everyday.  No regrets here and I wish you the best!  I haven't had any problems with the bag yet either and I've got a big ol belly yeah
Posted 6/15/2011 3:22 AM (GMT 0)
That is reassuring thank you, im extremely nervous about this surgery, it still wont be for a while yet as i havnt even met with the surgeon, but im anxious to get it done and over with. Im hoping that after the surgery i can maintain my weight where it is at now around 180, but in the end i dont really care as long as i feel better then i do now!
Posted 6/15/2011 12:37 PM (GMT 0)
You may not have to wait that long. After my initial consult with a surgeon, I only had to wait a little over two weeks for my surgery. Had my stoma already marked a week after the consult. I am used to having to wait for over a month to get an appointment with a dentist, so I was shocked at how quickly things moved along with such a major surgery. I was glad though. Like you, I was anxious and just wanted to get it done with and back on the road to health.
Posted 6/15/2011 2:25 PM (GMT 0)
My surgery moved at almost exactly the pace of blueheron's -- it was scheduled two weeks after the initial consult, and I got marked a week in between. I had to do a really fast pred taper -- to get from 40 mg to 20 in two weeks, and that was hard, but I did it. Two weeks was a good amount of time to get ready, both practically and emotionally.... shorter or longer would have been harder I think.
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