Hi Everyone,

I just had my 6 month cancer check, and everything still looks clean. Good news aside, I'm feeling really pissed off about something and I need to vent.

I'm fat. That's all there is to it. I've struggled with my weight my entire life, and the older I get (46 years old going on 105), the harder it gets. When I finished chemo and my labs were back to normal at the end of 2006, I joined Weight Watchers. My roommate follows that program and has had some nice success with it. I gained 23 pounds in three months.

Actually, since stopping chemo, I seem to be packing weight on faster than I ever have. My eating habits are not wonderful, but they are not 23 pounds in three months bad either. I exercise, though not enough, and I have more stress in my life than I want to think about.

When I saw my surgeon for my check-up on Monday, I told him that I was concerned about gaining so much weight so fast. When I started chemo, I weighed about 220 pounds. I dropped down to 185 in my first two months of my post-surgery (removed my j-pouch) chemo. Now I'm up to 240, and have gained most of that since November. What I got from my surgeon was a lecture about self-control and watching what I ate. This pissed me off to no end. He also blamed a rash of leaks I've had lately on my weight gain, because it is making my stoma more flush with my abdomen.

My stoma has ALWAYS been too close to my abdomen. If it's any different now, I can't tell it. He attributed having to give me such a stubby stoma in the first place to being over weight and having "too thick" off an abdominal wall to deal with. All these stupid educational videos I've seen on ostomy supply demos have their share of guys with big guts and stomas as long as a penis. I still don't get why he could not have given me another half or even a quarter of an inch to work with!

So, I'm ticked off about him making an issue about my weight when I'm the one who brought it up and I told him what I was doing to try to deal with it, and he reacted like I was making it up or something. I'm already frustrated about this seemingly out of control gain that I can't stand it, and he lectures me on self-control. Arg!

One thing he also said kinda stumped me, and I thought some of you may be able to explain this to me. He said that since I don't have UC anymore, my "automatic weight loss" mechanism no longer exists, and I need to be especially conscientious about what I eat, since my colon is no longer dumping calories out.

When I had my j-pouch, my weight was stable. I was overweight, but I wasn't putting any more weight on. Why is it any different with a permanent ileo? Until I dumped weight like a maniac during chemo, my weight was stable. I'm not really convinced this weight gain is because I don't have colitis anymore. If that were true, I think I would have been gaining weight with my j-pouch.

I don't understand why I'm gainging weight like this. Even my oncologist just said to exercise more. I'm not losing weight on a roughly 1,500 calorie a day Weight Watchers program and exercising two hours a week. Heck, I'm not even slowing it down. I've tried eating more calories thinking my metabolism wasn't liking the 1,500 calories, but that hasn't helped either.

Anybody out there have any insight about what might be going on?

-Rae

Hi Rae,

I know how frustrated you must be feeling! I've had my fair share of weight problems (mostly as a result of steroids) and I know how hard it is to get that weight off. I'm not overweight at the moment but it is a struggle to maintain the weight I am (doesn't help that my mum keeps baking goodies for us since we moved by her )

Now as you know I've had a lot of surgeries in the last 11 years since they removed my colon and with each surgery (and subsiquent complications) my weight has dropped dramatically. For two years my weight stayed stable, in fact I couldn't gain the much needed weight that I'd lost. However, once I was over that initial recovery period it just started to pile back on again, and with each surgery the time frame before the weight gain started has been less and less!

Now I put this down to "famine & feast" syndrome. While your body is sick and you're not eating/absorbing essential calories it uses up fat and muscle in an effort to maintain the health of the body's vital organs because it thinks it's going through a "famine". Once you are well again it's only natural that the body is going to hang on to every calorie during this "feast" because it doesn't know when the next "famine" is going to come along!

Before I had all my surgeries I would go on the Weight Watcher's program and I could lose the weight by just kidding my body that it wasn't starving by piling my plate high with salads (no dressing) and fresh veg and only a very small portion of meat and carbs. I would have fruit and yoghurt for my dessert and would snack on fruit or raw veg in between. I can't use any of those tactics now so I just have to work harder at the excersise bit. I walk to work (well not at the moment because of a shin injury) at a fair old pace, mostly because I'm always running late in the mornings. It takes me around 40-45 mins to get there because I have to collect the post from the other side of town. The walk home is another 20-25 minutes. I am sure this is my only redemption, but it is a struggle!

Now that doesn't really help much does it! The only way to lose the weight is to eat less and excersise more but unfortunately we have to work twice as hard as everyone else at it! It doesn't help if you have a very busy life style that means you can't prepare fresh unprocessed food for every meal or that we have to be careful about getting obstructions so (in my case at least) can't bulk up our diets with fresh fruit and veg. It really ISN'T fair!

Rae, none of this is really of much help, but I hope at least that it helps you to understand why some of us have to struggle so hard.

Take care and good luck with the weight loss program.

Shell

Rae,
It sounds to me like you are really trying and doing the right things. Maybe my husband makes me watch that mystery diagnosis show too often, but I wonder if there is something medical going on. What about seeing an endocrinologist or even just your general doc for a workup?

I agree with your confusion about what the doctor said. Your colon may not be "dumping out calories" but it isn't absorbing them either since you don't have one! I think your small intestine is adapting and absorbing more, but that doesn't make weight gain a given as he seems to suggest.

Don't give up!

-Kenadi

We've done the medical test route, more than once. There's nuttin' wrong with anything that would explain the weight problem. I'm glad for that much at least, but doggone it, this is frustrating.

-Rae

Rae, has your thyroid been checked? I concur with a check-up, and go from there.

I'm sorry you are having these issues

Oop, we must've been posting at the same time.

I bet your doc is skinny. Skinny people always think that it is all about self control. Sure, that plays a role, but it is more than that.

In a general sense, it is correct that once you lose your diseased colon you no longer have that "calorie dumper." It is not because of unabsorbed nutrients (because the small bowel does that, not the colon). It is because the diseased bowel loses at least a 1000 calories a day in protein loss from the damaged mucosa. Those with Crohn's get a double whammy with inflammatory protein loss AND poor nutrient absorption. But, you are right, if that was what was happening with you, you'd be packing it on with a well functioning ileal pouch.

It sounds like something changed (for the worse) during chemo. I wonder if the chemo affected your metabolism in a more permanent way. Plus, I also buy into the notion that once your body has been in starvation mode (such as with chemo), it overcompensates once it can hang onto the calories. This may be a genetic thing that goes back to you having a very hearty stock of ancestors who could survive famine, due to an ability to store fat (such as the present day Hawaiians whose ancestors survived long boat trips to the islands). Of course, nowadays there isn't much call for that, so it is sort of a useless survival tool.

Bottom line is increase activity level and reduce intake if there are no endocrine disorders. Of course, I certainly have not won my battle and it has gotten worse with my arthritis slowing me down.

Here an interesting link that will help you understand that you are neither weak or crazy:
http://www.cancer.org/docroot/NWS/content/NWS_2_1x_Brea...ncer_Weight_Gain.asp

Jan

Rae - you should take that doctor's advice because I'm absolutely sure he knows what he's talking about. Why does he know? Because he's perfect and he's never had anything problems with anything ever! Okay, we all know THAT's not true. He just has no empathy.

At 1500 calories per day you'd certainly think you wouldn't be gaining weight. Are you on any medications that can cause weight gain? My excuse is Zoloft. And I'm sticking to that excuse. Just like every single little calorie sticks to my ass. Or thighs. Or tummy. Or feet.

My suggestion is to read some of Colette's later works in which she just becomes herself. No longer the thin beauty and absolutely embracing her more round self. I always try to remember that when I start self-butt kicking.

I just don't have any other suggestions. If you've been doing weight watchers and exercising, what else is there? Surgery with a lap-band? Nope. Gastric by-pass? Nope. No more surgery!!!

I'm thinking you look pretty dang good.

kathy

Hi Rae,
My first thoughts reading your post were:
1) Get your thyroid checked
2) Your body can't get out of the famine/feast mode.
So it's been said by the others here.
I'm piling on the weight now, too. Unfortunately I have NO self-control so it's my fault. Know anyone you can go for walks with? A brisk walk with a good friend will lift your spirits and curb your appetite for the wrong foods, burn calories and prevent you from eating as long as you're on the walk, at least!
You're not alone in battling the bulge - but better fat and healthy than thin and ill. My stoma was flush too, and I was severely underweight after surgery. I think your surgeon's just making excuses.

Dearest Rae,

This may sound dumb, but my personal experience with weight loss has been that, the less I worry about it and dwell on it, the better I do with it. Truly. WW is a great program, and when I do it I lose.

But I have a sister-in-law who doesn't do WW, eats things she shouldn't, but she manages to keep the weight off by walking. She's an absolute poster child for the benefits of walking. Is that an option for you?

And I think you could use a little pampering right about now. You've been through a heck of a lot, and you deserve to take care of yourself emotionally. How about a day at a spa? Manicure, pedicure, massage, facial, the whole nine yards. I think you really deserve it.

And be sure you're getting enough rest, okay? That matters.

And remember that your friends here care about you and support you.

Hugs!

Hi Rae,
I have had a similiar struggle. I lost about 40 lbs in a month when my UC was raging and I was in the hospital. It all came back on with prednisone and TPN. After I recovered, I decided to try and get the weight off again. I started at T.O.P.S. which is anon-profit version of WW. I work out 6 times a week and walk as much as I can. So far I have lost 57 pounds since September. It has been hard work but the exercise has really made the difference for me. I have also pampered myself with each 10 pounds that I have lost ( pedicure, massage etc.) I wish you the best and know that any weight I lose helps me get healthier so I don't get caught up in total pounds left to lose!

Rae, I don't have any medical answers for you, but just a suggestion. Have you tried going to a nutritionist. My daughter is insulin resistant and needed to lose some weight. The doctor recommended a nutritionist and it's working. She goes every 4 weeks and they discuss what she should eat, brands, portion amounts, etc. The one she goes too specializes in Diabetes and related problems. Maybe your surgeon could recommend one that could help you.

Some doctors just don't have any compassion, and I am so sorry that you encountered that. You've been through so much and I hope it gets better for you soon,

janna

I worked with a nutritionist while I was on chemo, and it didn't do me a lot of good. I know what I need to do, and for the most part, I do it, which is why this weight gain is so danged irritating. I'm stepping up my exercise this week, both to see if it helps my weight loss efforts, and to follow my oncologist's request that I exercise at least 4 hours a week. I'll see if that helps any.

My surgeon is a pretty compassionate guy, which is why this attitude of his gets me so wound up when this happens. He is, as Jan already guessed, a skinny guy. I've yet to meet a thin physician who had any idea what they were saying when it comes to weight control. As a group, they have always jumped to some pretty irritating assumptions.

-Rae

I agree with those who say get your thyroid checked. DOn't just have your GP do it, go to an endocrinologist. Most GPs will check on the TSH and that means they will miss a lot of issues. YOu need to have your TSH, T3, T4 and thyroid antibodies checked. Insist on all of the tests...my Mom has a thyroid condition that was only picked up by the antibody test which is almost never done if the TSH is normal (which my Moms was but her antibodies were out of control).

I fired my last gastroenterologist for a variety of reasons but some of it was weight related. I had lost about 30 pounds when I saw him in the fall. I shared with him my plan to lose 75 pounds. His reponse was " well, you have a lot more to lose" with no recognition of what I had already accomplished. Needless to say, I have a new GI doctor who is supportive of my weight loss efforts. You need to have health care providers who can work with you and not sabotague your efforts. Has anyone ever found an nutritionist that is normal size and not a stick??

Rae - I am with you girl! I am currently at the heaviest I have ever been. I am up to 220 lbs! I swore after losing all my weight on WW that I would never let myself get back to this point. But then the UC hit and my weight went up and down depending on my health state (flaring or not). Now with my illeo I find it difficult to eat the foods I know I should because of the obstruction issues. I lost my weight the first time by eating mounds of veggies. I can eat veggies now, but not in the quantities it takes for me to convince my body I really am full and do not want that ice cream cone! The past two years I have helped loose some of the weight by walking, but the past 6 months with my hip injuries I can no longer ever do that. As soon as I am given the all clear by my surgeon, after my hip repair on Wednesday, to exercise again I am going to hire a personal trainer to try and figure out how the heck I can work out to my benefit without further damaging my hips, foot (plantar facia) or giving myself a hernia. I have tried the trainers at the gyms and they haven't a clue how to work around my medical issues so it is off to one that has medical knowledge. Maybe I will even try a nutritionist.

I guess my whole point is I know how hard this is. I have lived this same struggle my whole life and I am having a hard time lately not letting it get me down.

I am not fat - I am Victorian.