Will I Ever Feel Better After My Surgeries?

Hi everyone, I'm new to the site just today. I've been browsing on here the last couple of weeks and decided to create an account as everyone is so understanding of people's concerns and questions. So I thought I'd ask a few myself.

The topic title basically shortens everything. But it's accurate; on the 30th of September, I had my surgery to completely remove my large colon, just leaving a rectal stump and bringing out an ileostomy. Then a week later, a second surgery to remove a hernia which was causing a full obstruction in the small intestine. I'm now approximately 4 and a 1/2 weeks since my second surgery and just feel like I'm getting no better. My stomach is still pretty sore and swollen. I'm struggling bending down to pick things up off the floor. It kind of hurts if I press slightly on my stoma to burp my bag. Also, slightly unrelated, but my legs and arms are still so weak from the deterioration of the just over 2 months hospital stay. Will it ever get better? I just still feel, despite the fact I've been home for over 2 weeks, that my quality of life just isn't improving. Gone from a very active and relatively strong lad to being unable to sit up without using my arms to push myself up to get out of bed or stand up off the sofa.

Thanks in advance to those who take the time to read and reply to this long-winded post. I'm just a bit of a worrier. And will for sure have more questions to post.

You are anxious and eager. All normal. Give yourself a break. You shouldn't be bending or picking up things from the floor this early. Nope.

Yes, it gets better. Don't push or rush yourself, dude.

Plenty of others will chime in and agree.

Good to have you. Welcome. No worries about any questions. We've got you covered. We get it.

By the way, some folks here say it takes almost 2 years to fully recover from most major surgeries. I bet at 6 months though, you will feel better. Not 100%...

Body needs time to recover, adjust. The new you is coming. Be patient.

Thanks, man. I appreciate the reassurance. You're 100% right. I am eager, a little impatient to say the least. Just want some sort of normality back. Again, thank you!

You are certainly welcome.

It will come. You're 26... you got this, young man. I was like that and still am anxious. You learn patience over time. A long-time lesson learned too.

We can advise you on many things... it helps knowing others who have been there and done it.

It's like having the Monarch Notes? If I recall correctly...

A beeline to some facts... not fiction. This is the best place... best of folks to guide you.

It will be a ride... having ups and downs. Some confusion, too.

Always will have a helping hand here. Post whatever you need answers to.

Hello and welcome! Wow, good fortune for you that you have found this site so early in your journey! And a journey it is - this group will help you along the way. There will always be an assortment of answers or opinions, and this is good. Just remember, and you will hear it repeatedly - we are all different…even though some may have had the exact surgery you had. So, with that in mind, the difference is our own body, and who knows a body better than the person living in it? In terms of healing, you are so very new in your journey - I am one who took a full 2 years to get back to what I felt to be my “normal”. I am way older than you, but prior to my surgery, I was very, very healthy. I am guessing your recovery time will be much shorter given your current ambition to get to normal quickly! Just beware, healing takes time and hernias lurk. Best wishes for a speedy recovery! jb

How to Adjust to Life with an Ostomy with Bruce | Hollister

Don't beat yourself up, I rushed in to several things because I didn't want to be a "martyr" and it was stupid. As Warrior says, you'll get there quicker if you go slower.

Hi Nick, welcome to the site. There's a lot of good info here and good folks too. Patience is the key here as you don't want that hernia back. The more surgeries you have, the more prone you are to hernias and internal scar tissue causing problems. My advice is to eat the foods you like but stay away from fibrous ones like pineapple or mushrooms as they don't break down. Raw veggies can be a problem early on after surgery. Also, chew your food until it's totally broken down to mush so you will have a lesser chance of a blockage.

G-Day Nick,

Welcome aboard, mate. I had my colon removed 20 years ago, and it was a long time before I was able to stand up straight, but after a few weeks, it slowly started to come good. I had a J-Pouch first but got rid of that 2 1/2 years ago and got my wonderful ileostomy, a real life changer. You might look like you're healing on the outside, but there is a lot of healing going on on the inside. Just take your time and don't overdo any lifting, and before you know it, you will be off and running.

Welcome, my friend. Regards, IGGIE

Hello NIck.
Welcome and I love the name.
Lots of people giving you good advice, which I cannot see any point in repeating so I will look forward to reading about your progress as time moves on.
Us ostomates need to learn how to go from being patients to having patience. 
Best wishes

Bill

Hi Nick, welcome  to the site. I am glad you found us so early. You have already seen what an awesome group we are. My advice  is take time to heal properly. It is still very early days for you.  No bending to pick up things off the floor, no pulling or stretching. Do not lift anything  over five pounds.  Waiting  to get back to your usual routines is not easy but you will get there. Remember  the goal is no hernias  or blockages. Chew chew chew is a mantra here. Introduce  foods that you like slowly. Stay well hydrated. Hopefully  you will be one of the lucky ones here that can eat anything they  want.  Just be aware of portion sizes.  Now that you have found the site keep chiming  in with any questions  or give any feedback.  We also like a good joke. I will also add ostomy 101 is a good site. YouTube videos are good too.

Hi Nick

I think it's very positive that you've reached out to others at this time, because to me, it demonstrates that you are dealing with both the need for, and consequences of your treatment and focusing on your recovery well, I'm sure many here will admire you for this and feel you are taking steps in the right direction.

Do remember you are still in the "aftercare" stage following your recent surgery and both rest and reflection can help with the healing, recovery and adjustment processes, so take it easy and stay tuned to this site for guidance and morale boosting chats!

My surgery, the same as yours, was 20+ years ago in the month of July and I vividly recall at the time, and for many weeks afterwards, feeling physically and emotionally overwhelmed and drained and generally uncertain, however, by the following January, I was backpacking in Mexico. I was able to kick start things and to date, my stoma has never held me back from achieving my goals.

I notice you hail from Rotherham, Yorkshire, I was born and schooled close by and attended my very first music gig there, a good memory!

Best

Will

While I am replying to you, warrior, because I agree with you, it is also to the gentleman from the UK,

It is very likely that it will become better, as it does in many cases. While positive thinking can definitely be a help in recovery, we are all individuals.  We process things differently and our bodies help what the mind dictates. 

Do not despair. Give it time. There is no set time to recuperate after such an insult to the body. My best advice is to TRY (advice is cheap) to seek out things that, at least used to bring you contentment. 

They say that time heals all wounds. Most of the time this holds true if enough time elapses.  In the end, acceptance of a situation is the key and the norm.

Take your time. This month is my 2-year stomaversary. I have a permanent colostomy. I'm 66.

The first thing I did after coming home from the hospital was fall. Twice. Luckily, I didn't break anything, but it hurt like hell for weeks. Then I started dropping everything I tried to grab. I had never dropped so many things in my life: keys, spoons, remote controls, cell phone, ostomy supplies, money... It sucked because I just couldn't reach down and pick them up. My cat refused to help.

When I first arrived home, I couldn't walk across my living room. Three weeks later, I returned to full-time work. It was hard, but I was tired of laying on the couch. Three months after surgery, I went on a 7-day cruise vacation. I was very self-conscious about the bulge under my shirt, but I learned no one cared. So that was good. At work a week later, I became dehydrated and passed out, smacking my head on a machine. I had an interesting ride in a paramedic ambulance. Two days in the hospital. Lesson learned: take it easy. The company I worked for freaked out and laid me off a short while later. At 6 months, I could bend down carefully and actually pick up stuff I dropped. Yea.

At 2 years post-op, I have no pain. I ride my beach cruiser 20 miles every other day. I walk several miles a week. Stay hydrated! I regained my former physical self, though I'm 30 pounds lighter than before surgery.

Colostomy is easy to care for. I don't give it a second thought anymore.

Hi there, I'm in a very similar position to yourself by the sounds of it. 

Same stage after ileostomy, today has been really tough in that I've had constant pain in/round the stoma and have barely been able to walk or stand up straight. 

My 6 week hospital stay made me an anxious wreck having previously been what I considered to be very mentally strong. And from a physical point of view, I'm a firefighter and right now it feels like I'll never be able to get back to this.

I'm sorry I haven't been able to give you a shining beacon of hope, but hopefully knowing that you're not the only one with these feelings gives you some comfort. 

We will get better, I think it'll just be a steady game of patience. 

Best wishes 

I was 21 and after 35 years I can tell you that after healing up that first year ish it all becomes Nothing much to deal with.   Healing the belly and stoma takes the longest and hurts but if you can move and stretch as much as you can tolerate really helps your flexibility in the area.  I've had amazing normal life with very few leaks or accidents.  I've had lots of beautiful girlfriends and two beautiful wives who looked past it with no problem (unfortunately just got divorced).  After trying Most of the products out there I recommend trying Convatec Flexible 2 piece.  It seems to bee the one that has kept a liquidy ileostomy the best controlled.  I also use the "little ones' pouches  (6") most of the time because I hate the huge ones unless I'm traveling or won't be near a bathroom.  In a few years everything will be predictable for you as far as eating things that bother you and find a nice cover for intimate moments and soon you'll be back on here saying the same as me!  Happy to answer any questions you have anytime!

Just wanted to add... I still cannot stand straight or lie flat on my back. I became malnourished during my medical adventure, affecting my upper spine. I was bedridden for three months, hardly eating.

Two years later, my head is still tilted forward over my shoulders, causing a 2-inch loss of height. Occasionally, I get upper back pain. I am extremely unhappy about this. It makes me look frail.

Two months in the hospital would weaken anyone. You have to give yourself time to heal. Don't be bending down to pick things up; this could delay your healing. Stressing your stomach muscles when you are just out of two major surgeries is not advisable. Let yourself heal. Try to be patient with yourself and your healing process. I know you want to just get up and do it all, but you need some time. Do you have an ostomy nurse or PT to help you in your healing? After my stoma relocation surgery, I had PT to help me strengthen my stomach muscles, slowly and gently. If you don't have this, you may want to ask your doctor or surgeon for a referral to get some PT (Physical Therapy). If you can get a referral to a stoma nurse or wound care nurse, that would be good too. To make sure you are healing properly and nothing is getting infected or out of whack.

Hello and welcome,  You've gotten so much good advice here that I hardly need to repeat what's been said.  I will just say, don't get overwhelmed with some of the detail and remember, everyone is different.  Especially when it comes to food, some will tell you to not eat this or that.  There is no strict rule about what you should or shouldn't eat.  The thing to do is be careful, try small amounts of foods you might be unsure of, chew, chew, chew, and keep really well hydrated.  Some with ileostomies can eat anything and others have problems with certain foods, but the only way to find out is to experiment, slowly and cautiously.  You are young and time is on your side.  You've been through a lot, but it will get better.  Just a little patience is needed.  Good luck.

Terry

So much good information. Thank you for sharing. Sometimes I don't know what or how to ask. I am new at this June 2024.

I am learning and understanding so much from this site. Listening to others who have walked the walk is so much more valuable than just reading what someone has written from their point of view who doesn't have any type of stoma or wears an ostomy bag.

This is helpful to me, Shamrock. But I simply have to ask about Soylent nutritional drink. Is there really such a thing? I don't believe I would want to partake, as I think that most of us remember the movie "Soylent Green." Again, is there truly such a beverage? I can't believe that anyone would name a product such.

Awaiting your answer.

Welcome to the site. I am new here also. You have been through a lot. You are very strong to have endured blockage from a hernia and two surgeries. I recommend walking, just a little at first, then add a little more each time. It will make a difference in how you feel. Be sure to eat the foods your doctor recommends, avoiding large meals, but rather splitting them up. Protein is important to promote healing. Take care.

Can you eat a small amount of nuts now? I miss nuts and raisins… popcorn.

Morning! The idea about eating from the no-no list of foods is easy.

Moderation.

Chewing.

As each person's digestive system varies, you have to experience it yourself. I mean, if you decide on nuts, for example, try just a small amount and chew the heck out of them. Just a few. And wait. You might find, as I do, little pieces, tiny specks in your output.

Did any of it affect you?

If so, stop. If not, try the same amount the next day.

I have eaten pistachio nuts, and the result was as mentioned above.

I don't know anything about raisins.

And popcorn, I avoid it, but a member here loves it and he'd say he'd pay for it later (waves to beachboy👋).

You do need to try your favorites. And just see the results. Moderation.

Chewing.

Life is too short not to enjoy certain foods.

For me, corn, nuts, cherries, garlic bread are part of MY no-no list.

While others have no issues eating them.

Just heed the advice about what a member says.

Hello,

I have a colostomy; this month is my 2-year stomaversary. So... 2 years with my little stoma I call... Cherry Bomb.

Eating. I love nuts. Especially cashews and almonds. I discovered I can't eat them without trouble. They cause my stoma to swell up like a mushroom... for days. I still eat them, but limit the amount to 5 nuts. That's it. 5 cashews or 5 almonds. I don't eat them together. 5 cashews one week... 5 almonds the next week. Remember: Chew, chew, chew... then chew some more. Otherwise, sharp chunks will be all over the seal area of your bag at empty time.

Peanuts and pistachios are no problem. I eat them all the time, chew the hell out of them. My stoma is unaffected.

Popcorn caused me trouble at first; I ate too much at once. Same thing, swollen stoma. But I kept eating it every few weeks at the movies. Only buying a small bag, no butter. I'm careful not to swallow kernels or kernel chunks. I slowly munch half the bag, toss the rest. As always... chew, chew, and chew. My stoma is happy again, no more mushroom impressions.

I now eat beans. Refried beans cause me no gas; all other beans do. I wear a support belt that firmly holds my bag on. Last night I ate a Barbacoa burrito with black beans, rice, and mild salsa. Hours later, my bag looked like a balloon. I burped it. An hour later, burped it again. Woke up this morning, burped the balloon again. My support belt held the bag on, bag filter slightly helped with air pressure. I use an IGGIE clip on the Velcro drain. So far in 2 years, my Hollister bags have never blown out or leaked.

I eat raisin bran cereal all the time with no trouble. Eat some corn... not a lot.

So make a food diary. Eat a little, well-chewed amount of something you like. Write it down. See what happens. If you can tolerate a little, try eating more, see what happens. Eventually, you will confidently know your dietary abilities.

I eat nuts all the time.  Just chew them up really well, I mean to the point that they are just mush in your mouth, and don't go crazy, just a small portion.  Wash them down with something afterwards.  I love nuts and they are good for you, so don't deprive yourself.

Terry

I enjoy eating the smooth peanut butter with a spoon right out of the container. No chewing needed. Yum. Regards, IGGIE

I am recovering from hernia and stoma surgery. The original surgery was Sept 16, then I ran into an abscess and infection which was treated early October.
My healing mantra was "the less I do now, the more I can do later," and it has paid off. Find a show to binge-watch or pick up a novel or start playing video games. Now is the time you can do those things guilt-free because your job is to heal.
I started back with my trainer 2 weeks ago, very slowly and at a low level, and I also take yoga, and that too has been very gradual.
I test whenever I can, but I'm starting to get back into the swing. It will happen, but it takes time.

Good luck, and I hope you find a way to fill the hours. I napped a lot and watched “My Brilliant Friend” on Max.

Yes, you should feel better but you can't rush it. It can take up to a year to get over such a large surgery. But, if you are experiencing a lot of pain, you might want to check in with your surgeon just to confirm there isn't anything serious going on. Hope you feel better soon.

My ileostomy was in 2010 following a prior surgery turning into full blown septic shock. I too spent two months in the hospital and was left to open air heal to prevent internal infection. Honestly it took me about 3 years to feel somewhat normal. Be kind to yourself during your healing process!

You are so smart to reach out. It can be very discouraging when you aren’t progressing as quickly as you hope. Each day seems like “is this my new normal?” Then a month goes by and you will look back and see how far you’ve come.

My surgery was in 2021. I was also in the hospital for 2 months and too weak to even sit up on my own or turn over. By the 3rd month I was getting around the house and climbing stairs with great difficulty. I  tried to do a little more each day and celebrated each small victory. I did not let myself lose hope or fall into self pity. Now I’m living an active normal life.

Keep asking questions and stay positive.