I've been out of surgery over 6 weeks but I'm still afraid to eat. I have been having issues with gas pains and general uncomfortableness after I eat. Since the second surgery I've been losing weight and my anxiety to eat doesn't make it better. I'm 5'5" and weigh 118 lbs right now. I'm very weak. But I'm afraid to eat because I don't want to constantly have to go in hopes of releasing air. I tried Simethicone and it helps release it but the bubbles are still moving around in my belly for hours before I can release it and it's very uncomfortable. I also cannot sit well. I go probably 12 times a day which is more than I went when I had a UC flare. I only went about 8 times then. I don't know how this surgery made me better really? Except that I don't bleed or have fevers daily. Yesterday I felt in and out of consciousness although I had eaten breakfast in the morning but by noon I already felt that way regardless. I've been drinking water. I feel like I'm wasting away. I went to my GI yesterday and he said he will follow-up with me if I have any problems. I don't think I have pouchitis I'm just afraid to eat. I will see him again in 6 months or so. Also yesterday after breakfast I had a higher pulse than usual by noon when I went to my GI. I was tachycardic during my flare before all the surgeries and it was better after the colectomy but now it's coming back and even just walking from my bed to the kitchen causes great exhaustion. I don't know what to do. Even my text now is probably all over the place because I have trouble focusing.

Original Post

Try elemental protein shakes. They’re “pre-digested” so little to no stool. I used them to recover from all surgeries as I found it difficult to eat too, but your body needs the protein and nutrients to heal. Not cheap, but as replacement or supplemental meals, worth it in my experience.

I've been eating like crazy since takedown. First few months are rough I'll agree to it. There's a lot of learning curve, some foods will agree very well with you, others might not. I was down to 42 kgs post takedown but now at 60 kgs and fairly lean mass. The key is to eat alot of those right foods. I eat many brown bread slices with peanut butter spread or regular butter. Chicken cooked in olive oil also help me put on mass. Rest boiled sweet potatoes, bananas , hard boiled eggs are something I eat regularly.

I workout almost daily so thats also helped me in increasing my body's ability to digest well. You need to get out that phobia of not eating enough if you want to put some mass.

Try doing Intermittent fasting , there's a lot of information about it online. 

Raj posted:

You need to get out that phobia of not eating enough if you want to put some mass

Thank you for your responses to far.

I don't have a fear of not eating enough. I'm afraid to eat because it  makes me feel uncomfortable and I'm also afraid of getting blockages.

I'm trying to drink at least 32 ounces per day plus coffee or whatever I feel like in addition to the water. The day before I posted this I only got through half of my water and saved the rest for yesterday and once I finished 32 ounces yesterday, I started to feel better.

I will look into the pre-digested shake. I used to be on Serious Mass but it had lactose and I didn't gain weight. I was flaring though. Maybe I should try again.

Edit: I just looked up Intermittent Fasting and it seems to be for weight loss, which I'm not trying to do. Can't afford to lose even more now. But thank you.

 

I read you saying multiple times that you fear blockages.....Not that you are having them. I am wondering if you might be contributing to overall weakness and inability to focus because you are not eating enough.

Agreed with the above replies that it takes time to rebuild and there is learning curve. But not eating is not going to help, unless you actually are obstructed.

Increased frequency and gas can also be because you are not eating. The general guidance, especially in the beginning, is small/frequent meals and low fiber. Try individual foods at a time and introduce new things slowly. It is a process over months, not weeks. 

As for shakes....those always cause my system distress no matter the brand. But everyone is different. For me, I keep foods simple and made at home as much as possible. I'd just try things in small amounts over a few days and see how it goes. Introduce one thing at a time over several days so you know which things work, and which may cause distress. But please do eat unless you are actually obstructed. 

It does get better and the range of foods you can eat will expand. I struggled greatly in the first year and had to push food to gain strength....but I got there. It is now 29 years later and that early struggle is a distant memory.

Stay the course. You'll get there. So glad you are here asking questions.

Yes it's just a fear. Not an actual problem. 

What you're saying makes sense. I'll try to do that. I also have a food journal so I was able to pinpoint a few culprits already (mostly foods with lactose so far). The other day my husband cooked for me and made everything from scratch but I was in bad gas pain the next day. He made potatoes with salmon, garlic, onion and tomato. Not sure what the culprit was there. ☹️

I know everything takes time especially because the surgery just happened. I'm just afraid to drop even more weight because I'm already too skinny. But maybe I need to stop focusing on that right now. 

I agree with Blueflame. The low fiber and plain Jane type of food for now. Really early days for you. Try beano, or mint tea, lot of stuff out there for gas. Onions killed me the first six months or so. Raw onions still bother me now and Im over a year out. Be kind to yourself. Noone healed overnight. They say healing can take a year or more. I still have some issues, but it beats a UC or a bag for me. Oh, and don't compare yourself to anyone. We are all so individual. Keep the eye one the prize. It gets better, but it doesn't happen in days. Look to months progress and then if it's faster than that, you won't be disappointed or so frustrated. Good luck. You're doing fine.

Andrina,

What do you eat in a day?  Can you describe your breakfast, lunch, and dinner.

I think I read one of your previous where you mentioned you have resumed working. If you don't overcome and move past your fear of eating and possible blockage, you will become so weak you cannot think properly, make decisions, walk, or function at work. Your body will shut down and you will damage your precious organs without proper food. Water is great but you already know that it's not nutritious and it's not food. Your boss and colleagues will notice your weakness and while they may be sympathetic at first, it can wear thin if you don't take care of yourself and if they have to make up for any slack. You say you have trouble sitting: Your tissues are trying hard to heal and protein is essential for the healing process, but you are starving yourself of the process.

If you don't eat nutritious food you are depriving your body at a time when it survived an intense surgery, had an organ cut right out, and tissue and muscles were sliced in half. In order for your tissues and muscles to heal and knit together, you must eat protein rich food. No fiber, raw, or acidic foods for now, so next time ask your husband to skip the onions and tomatoes, and say yes to the protein rich, omega rich salmon, and the filling potatoes. You will have frequency and gas and all the rest. There is no escaping it; we have all had the symptoms. Your body is trying to learn how to live in a new way and you need to help it, not starve it. If you didn't have the surgery, you might be going fewer times, but you risk cancer.

If you want to get well and be strong and vital, not weak or exhausted or live in fear of blockages and cramps, or be a slave to that fear, sort out your daily food choices. Eat whole foods and eat regularly: 3 meals a day, and snacks if you need them. Your plate should have 3 simple things in your first year after surgery: simply prepared protein, a carbohydrate, and a well cooked soluble vegetable (peeled zucchini or cooked spinach, or sweet potato). No acidic or rich sauces, skins, or processed foods. Eat clean. You're a smart cookie. You've helped others on this site with encouragement and love and support. Do the same for yourself. Treat yourself like a child that you love. You would make sure a child eats good food regularly, wouldn't you?  Help your mind and body heal, and eat properly. This is tough love.

That's all good info and I'll be returning to this thread and re-read everything more often. 

I just want to know if the cramps will get better with time. I hate having constant urgency and pain. Just moving or getting up from a chair causes me the feeling of having to go. I actually did have two or so accidents already. I just hope it gets better with time. If I know that it will, I can hold on for a few months and just endure it. Please just give me hope and comfort that this will get better and I won't be in pain very time I eat. I'm never comfortable in my body and that's not a condition I want to be or stay in.

However I need the water because without I feel too weak (dehydrated) and I feel better when I drink it. I add electrolytes to it so that helps with leg cramps and the days I drink it I don't have leg cramps. What would your alternative suggestion be? I don't think I made a bad choice by drinking the water? How will I do myself a favor if I stop drinking water? What should I be drinking instead? Honest question because that's now the second time someone tells me this but I don't get alternatives suggested. I can't just stop drinking water? 

Andrina, if you do not drink enough fluids, you will be in much worse shape, especially if you become dehydrated.  When I was finished with my takedown, I ate small meals with snacks in between.  Also, low residue diet, then introducing different foods, to see how it would work out.  I also drink coconut water- 1/2 coconut water with 1/2 water.  I usually drink around 50 ounces of fluids per day and I weigh less than you.  Please understand that it takes a while to adjust.  Eat those thickening foods-bananas, peanut butter etc.  to help you through.  Are you using Metamucil-I take Benefiber as suggested by my surgeon because it causes less gas in some patients.  I also am underweight, but I eat all day.  But I have always been this way.  At this point, I also am pre-diabetic, according to my A1C levels, so I have a referral to a dietitian to help me balance my diet and hopefully gain weight.  The good thing is I am not losing weight, just not putting it on.  I have never been afraid of eating, just trying to keep a balance so l don’t end up with Type 2 diabetes.  

 

 

 

 

 

 

 

 

But that's now the second time I'm told I shouldn't be drinking water. Once by a coworker and now by winterberry and I don't understand. I add electrolytes to my water because I don't want the sugary Gatorade which doesn't have much potassium. Sometimes I cold brew ginger tea. I don't want juices because of fructose. Coconut water is laxitive. I don't know why I get told I shouldn't be drinking water?

Since winterberry brought up work. After the second surgery I was very dehydrated and I walked around very slow and my director noticed. I started drinking WATER every day and it was instant relief and I felt much better. 

Why do people tell me water isn't good? @Winterberry

Adrina, I have read Winterberry's response and it does not say not to drink water. The response was that water is great, but you also need nutrition provided by food. I agree with water and non-sugar electrolytes.

As for diet, as others have said.....not everyone is the same. If our systems reacted the same, this thing would be an easier puzzle to sort out. For example, adding fiber through Metamucil is a big no for me; for others it is their go to. For me (and many but not all people), my system demands a low/no carb routine with limited fiber from specific vegetables. That takes time to sort out and it will evolve as your pouch heals and matures.

One of the biggest mistakes people make is failing to try one new food at a time. Combined foods make it impossible to know what works and what does not. And I would add, try one new food for several days before trying another. I can eat almost anything once or twice....but if it's on my general "nope" list, it will eventually catch up with me if I decided to make it a regular item in my diet.

To give you an idea of how one-off and individual food tolerances can be, I can eat all animal proteins, certain nuts raw, other nuts only ground. I can eat plenty of broccoli, spinach, brussel sprouts, onions and asparagus. However, I cannot tolerate lettuce, mushrooms or any uncooked thin skinned fruits or vegetables. I can tolerate wheat bread, but not other white flour products....and pasta is especially a big no. I can drink milk and eat cheese.....not yogurt, nor most ice creams. I can drink apple juice (though I do not), but "heck no!" to apple cider. As an added bonus, I generally avoid the carbs I can tolerate to manage pouchitis and bacteria.

All this diet specificity I have listed comes from years of trial and error, and evolution. Your pouch is brand spanking new and needs many months to adjust. Yes, it will get better. Yes, you must be patient. Yes, you must eat.

I'm glad you are here. Keep checking in, ask questions, let us know how you are doing. We've all been there.

In answer to your questions about pain/bloat/discomfort/accidents.....yes, these things are normal in the beginning and it will resolve over months. A blockage looks much different.....often includes severe abdominal pain, hard/distended belly, nausea, vomiting, fever, unable to pass stool, difficulty drinking fluids.

It does take a lot of trial and error to figure things out, for sure.  And it’s certainly not a one size fits all scenario.  It’s almost 3 years for me and I have definitely changed things over the years.  Now with this pre-diabetic thing going on, I’ll need to figure things out once again.  I am just trying to eat as healthy as I can.

The first few months are really tough. I have a high gut transit time so was also using the bathroom 10+ times a day and it was like that for most of the next decade. Be careful with drugs like imodium but that could help significantly, by just bumping the dose. Or trying alternate drugs. The gas/gas pains should subside over time when you normalize your eating schedule and food choices. Not everyone gets to live life with 3-4 BM's per day post j-pouch. I'm not sure what the literature says these days but numbers like that were promoted when I had surgery back in 2004. Having 10 a day can be manageable too. I've done it most of my life and held down jobs and had a family. I have a happy life.

There is nothing more difficulty than dietary modification but you will learn and adapt so that you can go back to enjoying life again. 

I stuck to low mass and high nutritional density foods in the beginning which helped. 

Definitely work with a doc and get the anxiety in check - even if it is unappealing. Benzodiazapines can help get you through the tough first few months. I've used Benzo's off/on throughout my life to get through hard issues. 

I hope it gets better soon. 

Good morning 🌞 

Hopefully you soon do well. Onions and garlic are natural sulfites and you may be sensitive to them, even the slightest bit sends me into huge issues with bloating, distention and some blockage.

I have found the yogurt Oui, to be very easily digested , also scrabbled eggs and my daily meal of turkey.

I must do low fiber always. Do hope the lactose intolerance is not permanent with you, it was just a short lasting , under a year with me.This all takes your body along time to adjust too, darn it🥴

You certainly need to eat , as the gas will just build up anyway and become awfully painful! Sometimes it just takes a good talking to your self and take that step.

Everyone out here is keeping you in our thoughts 👨‍👩‍👧‍👧 

Jan W

 

 

I've been suspecting it and now I finally found my thermometer. I have a temperature of 99.1. Just like before the surgeries. I don't know what to do now.

Everything else is OK I got an IV the other day and I'm trying my best to stay hydrated and eat regular small meals. I take my probiotics and do the Metamucil. The other day I wiped a little blood but it could be that I was at the end of my monthly cycle and it meant nothing. I cannot consult my surgeon anymore I would probably have to call my GI. But does it warrant a call? 

I know and I'm not calling it a fever but a temperature. I know it's low but that's how it all started with my last flare.

Surgeon doesn't accept my insurance but GI does. My GI already did blood work and he told me he will do pouch scopes etc just the general follow up stuff

Thank you for your answers I will not call him yet 

I'm getting worse. Losing weight, at 114 pounds. My joints hurt after I made a wrong movement or stayed in one position for too long and the pain doesn't go away after days. Almost all my joints are affected now. I'm drinking my water and I'm not afraid to eat anymore but the cramps are really getting to me. I setup a bed in front of the bathroom so I can sleep there and go without having to go too far. I didn't wipe the blood anymore but my temperature is 99.1 every night and I made it a habit to even have water right before sleep which sucks because I have to get up at night to pee (and poop). I also drink water as soon as I wake up so I don't feel too exhausted but it doesn't help anymore. I add electrolytes to my water by the way so I no longer have leg cramps like I had them after the first and second surgery. I started adding it afterwards and the cramps went away completely. So I know I get enough electrolytes. My blood work looked good too. My stoma wound acted like it was closing last night but this morning I checked it and it was weeping again. I feel that it will never close even though it was cauterized. I had my surgery on 5/28. I don't know how much longer my body can take all this.

I have difficulty gaining weight but never an issue eating and especially staying hydrated.  I just got over my first bout of pouchitis and lost a couple of pounds, but gained it right back once the symptoms disappeared.  The best thing would be to get yourself back on track with food and fluids.  I had to be treated when I was hospitalized during a flare for dehydration and malnutrition and am doing everything I can to not deal with that again.  You may want to consider a nutritionist/dietitian if you haven’t already.  Good luck!

I'm glad you are posting and I have been wondering if, perhaps, you are not receiving sufficient post-surgery support. Surgeons and GI's can be fantastic at what they do, but can lack the time to "hear" things and provide support resources. It's so important not to get so run down that you are then digging out of a bigger hole.

I experienced this (long ago) and learned I had to have a strong voice....say what is wrong, what I need and ask for who could help provide the solutions. If I felt I was about to be sent off without some tools to start sorting things out, then the appointment was not over. Otherwise very valid problems can go unheard and dismissed, all while you deteriorate.

Could you ask to see the GI in person or their support team and explain that your condition cannot wait weeks for an appointment? Let them know very specifically what you are experiencing and how you are dealing with it as you have explained it here in your posts?

I also agree with asking for a nutritionist who is specifically experienced with IBD and j pouch patients. A nutritionist not experienced in these areas can potentially steer you wrong and make things more difficult.....just something to be aware of.....It may not be the case, but I had it happen and it left me feeling there were no answers, rather than the professional not providing good answers.

Last, based on your other posts, it seems you returned to work rather soon after your last surgery. Perhaps too soon? I was a student when my surgeries were done so I had more time to work with, but recovery took many months as I was very weak going into it all. I cannot imagine going back just weeks after these surgeries. I wonder if not having more recovery time is contributing to the difficulties you are having, including the stoma wound weeping.

CTB23 posted:

I’m very surprised that you’re not able to get support from your surgeon’s office,  I still get support from them.

There is nothing I can do about that now. 

About working. I am the only one who worked at that time because my husband had a car accident and didn't get compensation. I needed to pay the bills.

Yea I had a nutritionist before and she had zero clue about colitis. I have certain food intolerances and it was included in her recommended food list. I told her it was a no go for me. I did well for a while after I met with her but I quickly went back to my old habits again.

@BlueFlame During recovery did you lose weight and did you gain it back?  

I wanted to go to urgent care today but now I'm home and I'm too tired to leave the house now. Maybe tomorrow. 

Andrina posted:
CTB23 posted:

I’m very surprised that you’re not able to get support from your surgeon’s office,  I still get support from them.

There is nothing I can do about that now. 

About working. I am the only one who worked at that time because my husband had a car accident and didn't get compensation. I needed to pay the bills.

Yea I had a nutritionist before and she had zero clue about colitis. I have certain food intolerances and it was included in her recommended food list. I told her it was a no go for me. I did well for a while after I met with her but I quickly went back to my old habits again.

@BlueFlame During recovery did you lose weight and did you gain it back?  

I wanted to go to urgent care today but now I'm home and I'm too tired to leave the house now. Maybe tomorrow. 

It's been a long time, but I imagine I did lose some weight during recovery. I definitely struggled to gain weight at first, but I was already coming from way behind the eight ball by the time I had the first surgery.

I'm not sure if I would be a good comparison. I became ill with colitis at 16-21, had the colectomy at 21. My "normal weight" was about 110 lb, but I was so ill by the end that I dropped to 89 lb. After the first surgery, I was not a candidate for reconnection until I could reach 110 lb. I hated the temporary ostomy so much that I was determined to gain the necessary weight within the standard 3 month span between the two surgeries. I gained the weight, but not without great effort and by eating super high calories. At that time it was not about healthy foods.....it was about high calories. 

After reconnection, I do not have recollection about losing weight. If I did, it was likely slight fluctuations. I mostly recall that weight gain and rebuilding strength took a really long time. I was told in a matter of months it would all be a distant memory. For me, that was not the case. It was a good year before I felt strong again. It was a slow rebuild, but I just kept at it. Now weight gain is not a problem at all!

We are all so individual and there are so many variables. I really hope you start feeling better soon. It will come. 

Andrina posted:

It has to get better because I don't know how much my body can endure. I'm dropping weight each day. 

I know you have food intolerances, but wondering if you can tolerate high fat/calorie choices just to get jump started. For me, when my weight dropped so low, I could barely push open heavy doors in a public place. That's when I decided I didn't care what I had to eat, I needed to gain weight no matter what it took. I ate fast food, ice cream, candy bars until I had the weight on my body I needed to survive. No dietician gave guidance and likely wouldn't promote this as a healthy diet, but it was absolutely necessary for a few months to get that weight on and as quickly as possible. Weight gain often just won't happen with chicken and soft veggies when you are so depleted. It may be some will say the junk food diet is not the way to go, but sometimes desperate times require desperate measures and thinking outside the box.

I had a GI doctor once who used to say "if you are going to be sick whether you eat toast or a steak, then why not eat the steak?"

Basically, you have to eat. You should be on a soft food diet right now. Here is a link to what a soft food diet is: https://my.clevelandclinic.org...l-soft-diet-overview

Start slow and slowly add fiber and less soft things to your diet. Certain things will make you gassy or uncomfortable, just like when you were sick: onions, garlic, cabbage, mushrooms, corn, spicy food, etc. Stay away from those for now. 

And definitely drink lots of water and electrolytes. I drink Vitamin Water Zero, and G2 (gatorade with less sugar)- those were suggested by Cleveland Clinic. All the electrolyte tabs and powders are good too.

Just hang in there. It eventually gets better. I'm almost 10 years post take-down and I can eat anything. You just need to learn your body.

Also, while talking to the Jpouch community is great and very helpful, you need to talk to your doctor too. If you aren't feeling well, they are the only ones who can help you and who can figure out if something is wrong. If your surgeon doesn't take your insurance, you need him to refer you to some other surgeons and figure out who does. GI doctors are great, but in the year or two post take-down, you need to be followed by a surgeon.

Good luck!

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