Colon removal

Hi, i did have a second opinion and had no choice of having all of my large colon removed.. the surgery went well but had to stay 2 weeks  in hospital because of infection! I realise today that it was the best thing for me to do, i have my life back, even with a permanent  ileostony i can do or eat anything i want to!!  Are they doing open or laparascopy surgery? 

I’m so sorry to hear that they had to take it all, but you sound positive, that’s good. How’s the infection now?

My surgeon says he will try to do it laparoscopically but might have to open me if he has to take more than he thinks. Which scares me a bit. They’re also taking out my gallbladder at the same time. But he didn’t want to address my DD on my right side until I recover from this. I think he wants to see if it still causes me pain or if the pain was gallbladder related.

I still have infection in two places of the incision, the nurse still come to my place to change the packing,  it’s been almost four months, but it’s healing slowly. I have always been positive, sometime it’s hard, but what can i do.. i had chrons since i was 17, and im know 40. Having a permanent ileostomy saved my life, i can now enjoy life again, almost everyday, ups and downs, but we get use to it!  At first i was shy about having a bag, but  why should i be? It’s me and i don’t want it to take control of my life!!😊

Annie I appreciate your post, it’s great to know that people can stay positive. I hope you heal from those incisions soon.

We sure do get used to those ups and downs, today was up this morning but really down this evening. I’m greatful when I get a break from pain and I’m hoping the surgery works. Now I’m counting the days, 20 to go! I’m trying to stay positive by meditation, therapy, and talking with people like you, thanks!

HI Ruby, my stoma is the best thing that happen to me! Why don’t you talk to your surgeon about that? It’s your body you are the only one who knows what you are going throught.. i feel you, my problem was that i could go to the bathroom at least 20-25 times a day, that’s how bad my chron was, i was stuck inside my home, not able to work, do anything with my childrens, not able to eat... i could go on . The best medicine is to be positive, it is hard sometime to be positive but tell yourself that you are stronger than the pain or the disease, theyre will be ups and downs, whenever you need to chat i will try my best to help you. You should take a appointment with your surgeon and talk to him about what you want and how you feel everyday, if he doesent listen to what you have to say, then get a second opinion. Is he a good listener? Do you feel confident with him?

Annie you are right about staying positive being the best medicine because before even reading your post that was how I was feeling. You must be a strong person to have went through what you have.

I can visit toilet in between 10-15 times a day trying to empty (some comes out each time)Can be sat on toilet for a long time. Stool is there and comes out eventually or can get stuck for long period of time Sometimes find I have so much poo and don't know how. I don't get to go out because of it, have been out of work for 4 year's now too.

I feel bad on my children because I can't give them as much as attention I would like to.

I don't feel like he is a good listener because I don't think he gets me how bad this is on my life. It's the physiotherapist that is fighting my corner with no luck I keep getting passed back to her care. The surgeon think's I just need biofeedback which does not help at all. I even struggle to pass gas!

Do you think you could find another surgeon? Try to get a second opinion, i think that would a good idea!! We might not know each other but i’m here if you need advice or just to chat! I will try my best to help you the best i can!! We always need someone that knows what we are going through, or understand what its like! Did you try natural products? 

I do need someone to take me more serious. Run different tests or even same as before as its been year's.

I try eating healthy also have a warm drink before I eat or after to help get the urge to go. Once I start pooping I find I can't stop.

I also tried Aloe vera, Pysllium husk. They even had me on Prucolapride which the doctor believed was amazing (did nothing) no change.

I been told I have IBS with consipation. I go everyday and my stool is soft.

Have you tried anything before your stoma?

Also thank you I really do need someone to talk to. I know my problem's are nothing compared to what you been through. Mine are getting worse not better.

I’ve had crohn since i was 17, i am now 40, i have been on lots on medications, the last one was humira, it dit help for couple years, but me was lots of diharea.  I would also take Olestyr, around three four time a day. It did help for diharea. Do you eat a lot of fiber when you are constipated? You can tell your doctor that you want to pass all of thoses tests again , i don’t understand why he did not consider that. Did you ever pass a colonoscopy? Mri and scan are good to.

I try to eat fiber. Lentil soup is very good for helping me. I also believe sometimes fibre makes me worse so I try eating it in little portions.

I not had a colonoscopy since 2011 (think thats where they look at the whole rectum?) All that showed was they was some ulcers in my bowel. They thought it be crohons. Asked me to do a stool sample, because my sample was a formed stool decided to not even test it. They then said it probably be proctitis, then I got diagnosed with solitary rectual ulcer syndrome and they left it at that. Ever since my problems got worse in 2015 had my daughter and relised something was coming out my bowel. They did a endoscopy looking at the lower part of my bowel. I could see for myself they was alot of mucus and when the surgeon reversed the camera in my bowel seen something strange looking (looked like a nose to me the shape of it. He said to me next time I see you be for surgery. Never happend get a letter to see physiotherapist instead.

I will ask them to do all the tests again, I suspect this time for the colonoscopy they struggle to get a full look of my bowel.

Hopfully I get a Mri scan too.

How do you find the stoma at first?

I was prepared for the surgery, i had read about it, and i knew it was for the best! I have a lot of support with my family, that is very important. Do you have support around you?

I don't think they ever give me one. They say I am so young all the time. I think exactly I am young and I have no life because of these ongoing problem's. Not forgetting 2 young children and partner that works 70hours a week.

Luckily I have support. 5 sisters who help me out with children for when I am at hospital, my parents also help me.

Good im happy you have support! It’s never easy with young children especially when your not feeling well, i totally understand you!! When are you seeing your doctor?

Is a struggle, harder feeling depressed. Friday I be going. Going to demand they check my stools too for anything.

Im happy you are seeing your doctor. Keep me posted please!!

How did your doctor appointment go?

I not been to great. I broke down in the doctors he offered to put me on antidepressants, refused because I think they might make my bowels worse. Give me a leaflet to ring some place for talk threaphy to maybe help as I am really emotional about it. I bottle it up because if I talk about it and gets me upset.

Spoke to my physiotherapist and she told me that they is something she want's to try with me injection in the foot not sure of the name. Also keep with biofeedback then send a letter to surgeon if no change. Worried about that as surgeon told me I just have to get used to it and my stool always get stuck because of the descent. I see the physiotherapist in 2 weeks

How has everything been with you?

IT’s normal that you are upset about allthis, your right i don’t if the antidepressants would help you.. but im sure it would be good if you could talk to someone. What are the injections in your foot going to help for?

She said it can stimulate the bowel muscles ans has helped people with incomplete emptying, also told me to not get my hopes up. Think this is why I am so upset as I give up on all hope.

How is life with your stoma, do you find you need to be careful? Curious to know if you can still wear the same clothes too.

Life with a stoma is for me the same as not having one.. i still wear the same clothes. You have to be careful at first with what you eat, like raw veg, salade, no nuts.. you dont want to cause a blockage you get youse to it! Now i can et almost anything!! You have to sccept it, i think thats what makes all the differince! Because of my stoma i have my life back, only difference is that i have a bag and have to empty it couples of time a day!!  Im really hoping they do something for you, keep faith and get differents opinion from specialist and surgeon! 🤞

I'm glad nothing has changed. I do sometimes look at videos of people changing them to get a idea (encase it ever got to that day).

As for blockages is that just at first or forever? It be nice to be able to eat foods and not worry. I enjoy healthy food but also enjoy unhealthy food but find I got to be careful with both.

I do feel slightely lied to about surgery. Think the surgeon knows its what I want and thinks I am not trying other methods first. Maybe I am wrong and he was right when he said they is nothing can be done, because he can't lie?

It’s hard to say they are all different, but maybe he does not want you to regret having a stoma right away?  For the blockage its mostly at first you have to be careful, but i cannot eat nuts, popcorn.. allthise kind of things, it can cause blockage! But i got use to it! We have to chew our food a lot and drink a lot of water. 

I didn't know that you would think it would take alot of those foods to cause a blockage, I don't eat them.

I think I am just looking for a quick fix, finding it hard as I don't go out or work anymore. Finding it very difficult.

Think I struggle with chewing food alot because I eat abit faster than I should, I blame the children lol.

I understand it’s probably not easy with young children. How old are they? My daughter is 18 and my son is 13. 

I have a son who 7,daughter almost 3. I had bowel problems since my first pregnancy and just got worse over the years. I mention this to the surgeon how it affects my life and causing issues with looking after children. I'm mainly on my own as my patner works long hours.

I understand it’s not easy with young children! But one thing you must think about yourself too,  you have to take care of you, try to do something that you like, believe me i totally understand that sometime it’s hard even just to get out of bed, but it important mentally to think about you! Do you know any support group? Or even parent/children playgroup, you’d get to see other people... that’s what i did with my son, i went to playgroup!! Did you think about getting a second opinion?

Annie I find my life so demanding I don't have time to think about me.

I really isolated myself because I spend so much time on toilet I don't make arrangements to go out. It stresses me out if they is a family birthday party because I know I have to turn up and be around certain people I don't know. I'm not doing good mental wise, I havent told my partner how I feel and things are not doing well between us lately because the way he makes me feel (burden)

I'm in UK so not sure if we get second opinion unless go private. I could ask my doctor to send me to a different hospital.

All the professionals keep sending me back to the physiotherapist who wants rid of me too and wants me to have surgery.