Update on Mum 71 after emergency bowel removal last Tuesday

Mum continues to amaze the doctors after her emergency bowel removal on Tuesday evening, She has now had most of the tubes removed, only the feeding tube and morphine pump are still connected. She was up yesterday sitting on the chair for most of the day and after having the catherter removed has walked to the bathroom a few times. They are still feeding her on the liquid food but she did have jelly lunchtime and soup for tea yesterday. One doctor has said she may be out on Wednesday. She did have an off day on Saturday and could not stop crying, to top it off the stoma bag exploded which really frightened her, she said she did not think she could cope with what had been done, but yesterday she was back to her normal self, joking etc. Mum is still waiting for the stoma nurse to come and see her to explain things in detail.

Would like anyone on here who has gone through the same thing to mail and advise how you coped please? Where you told what sort of diet you could have or was it trial and error?

Hope you all had a good Mothers day yesterday.

Take care

Sue

x

20 Replies

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  • Well done to your Mum and her family, for coping with all this. In my view, you can help her by making sure your Mum is feeling more steady and can cope with her bag and stoma before they discharge her from hospital. Sadly, there is pressure on the NHS to discharge quickly (costs).

    Also I would recommend you ask what follow-up care will be provided when she goes home. She should be visited by the local stoma team regularly, after her discharge for a while, until she gets used to managing this new thing. She should be medically supported for a while yet.

    She has coped wonderfully but needs to be spared the worry of "what is this/ what will happen if .....etc" which often happens after a major op.

    Good Luck to you all

    Love Wendy xx

  • Hi Sue,

    Excellent news. I am sure it will take some time to get used to its ways, but it will be well worth it. I know a couple of ladies on here have been through the same, and I hope they can help with some of the reassurance and questions you have.

    I am so pleased for both of you that this worrying time has had a happy outcome.

    Love Lizzie

    X

  • Hi Sue,

    I am so sorry your Mum had this experience. I had the same about 8 weeks ago. You don't mention whether she had an ileostomy or a colostomy. I ended up with an ileostomy and I must say I hate it although I cope with it. It has changed my life and at times I feel it controls me, however you can get really good advice from both the stoma nurses and either the ileostomy or colostomy associations.

    The advice about diet is mixed, and depends on what was done (ie colostomy or ileostomy), but the best early advice I had for a ileostomy was to eat bland foods, potatoes, pasta, rice, white bread, and avoid anything with bran. (Also eat protein of course to help with healing.)This helped me get the output right and it is easier to deal with. I could then start introducing other foods. There are good advice leaflets on the Dansac website, amongst others.

    I also had an explosion in hospital and it is horribly upsetting, but when it settles down leaks are relatively rare and the stoma nurse can give advice about what might be causing them. If the output is right, leaks are less explosive.

    A friend advised me to look at the stoma products websites because all of the companies have helplines and will send free samples of the various products so that your Mum can find bags and other things that she is happy with. The kinds of fixing surfaces vary and that can make a difference, and you can either get clear or opaque bags depending on what you prefer.

    My stoma nurse advised me that hardly anyone likes their stoma, but most people grow to accept them. I suppose we're alive and that's what matters.

    I am still up and down- some days I feel like I'm getting some control and some days I get upset, but it does get easier. I have gone out for meals, had reasonable walks and go for short shopping trips, I just have to remember to take what I call my baby bag in case of leaks.

    Obviously I'm new to all this and there will be people with more experience, but if you have any specific questions, I would be happy to try to answer them.

    One more thing, chemotherapy does send the output to pot a bit, as it does upset lots of people's tummies, so thats one to be prepared for if it's relevant.

    I wish your Mum all the very best. Let me know if I can be of any help.

    Warmest wishes

    Sue

    x

  • Sue,

    Thank you so much for the reply, to be honest I am unsure now what my mum has had. I did not realise there were 2 different procedures. All I do know is that she had 3 bowel obstructions previous to this episode and the scan showed the cancer had infiltrated the colononic wall. On Tuesday the surgeon said the bowel was completed obstructed that was why she could not even sip wayer without vomiting. After the op he told me on the phone they had removed the bowel and that she had a stoma fitted. Your reply will make me try and find out a bit more information as to what procedure she has had done. With visiting 2-4 and 6-8 it makes it difficult to have a word with the doctors to find out more. Did you have tubes in your neck for feeding?

    They have this afternoon removed the morphine pump so now mum is taking pain killers orally. Still no sign of the stoma nurse though.

    I wish you all the very best and a speedy recovery.

    sue

    x

  • Hi Sue,

    I didn't have feeding tubes in my neck. It sounds like your Mum has been poorlier than I was, unfortunately.

    One thing I thought of after I replied was that they tried to discharge me before I had seen the stoma nurse. It was a Saturday and they don't work weekends. Although I hated staying in hospital, I refused to be discharged. I said that you can't send someone home after life changing surgery with an instruction sheet, and I didn't know when the community team would have picked me up if I had gone, or what I would have done had I had a problem. At this point I hadn't changed the bag myself so didn't really have a clue, and because it was a gynae ward rather than colo-rectal, lots of the nurses didn't either.

    I hope that won't happen to your Mum, but perhaps something to bear in mind. Definitely a time to be the difficult relative if it does!

    I'll look out for you tomorrow and see how she's getting on.

    Best wishes

    Sue

    x

  • Yes, Sue! I agree with Sue (.....confusing, this!). The point she makes about early discharge is what I was hinting at earlier. From my experience (with other relatives), you have to be insistent that there is proper preparation to leave hospital and that your Mum has the right support at home. I took a very visible notebook when we were caring for my mother-in-law and wrote the nurses and doctors comments down, dating and timing the comments. If they were going too quickly, I asked them to repeat the main points. It made them aware that I was taking this seriously, I think, and that I had documented the process!

    I also asked the nursing sister when I could have a meeting with her consultant, which took a couple of days to arrange but was fitted in at a time when he was doing his rounds (we went in to visiting early that day)

    I know people don't like to make a fuss, but I'm afraid, it's sometimes necessary. Good luck

    Wendy xx

  • Wendy,

    Just got off the phone from Mum and she has been vomiting all night. The doctors are not overly concerned but Mum feels now she is taking steps backwards rather than forwards. I am visiting her this afternoon and if no stoma nurse has seen Mum I will be having a moan, no dieticain has called either, so Mum is probably eating the wrong things. Will update later today.

    Sue

    x

  • What a shock I had when I arrived at the hospital today, Mum looked so frail and her face looked gaunt, so different from Sunday. She had someone come to see her from the hospital wanting to question her about her experience since she had been admitted, she said he was with her for 2 hours and in that time the stoma nurse came onto the ward then disappeared and said she would call back later this afternoon. Not spoken to Mum since I got home so not sure if she called back or not. They were going to remove the feeding tube in her neck this afternoon as the 7 days were up, but if Mum starts to vomit again they will have to put a new one in. Just hoping now that she can keep her food down. She did manage today to have a shower by herself and said she felt better for it.

    They weighed her the other day and she had lost 3kgs, seeing her today I am 100% sure it is now much more than that.

    All for now,

    Sue

    x

  • Oh Sue! This must be so hard...she is under 24 hour care though so at least they will keep her as comfortable as possible and can keep an eye on the weight, vomiting and food situations. The Stoma nurse sounds like she needs some serious talking to! Is there anybody involved in her supervision that you can kick in to touch? A specialst nurse? A shower can make all the difference, in hospital. After my debaulking it made me feel human again, and I was nil by mouth for a week following a bowel resection as part of that. I was sick a lot also. One tube into me for the fluids, and one through my nose for the vomit. My legs swoll up like balloons from the fluids but I lost all muscle mass (my bottom disappeared completely and my arms were like sticks)...but I came back from it.

    Please keep us updated, I am rooting for you both.

    Love Lizzie

    X

  • Lizzie,

    I found out last night that the stoma nurse called yesterday afternoon just after Mum had the feeding tube removed, so Mum was unable to sit and have a conversation with her as she had to lie still and flat for 30 minutes after the tube was removed. The stoma nurse did apologise for not calling sooner but said Mum's details only got put on the system yesterday, and that she had had stong words with who ever should have inputted this information. She left Mum a booklet and some other bits and pieces and promised to call back today. The doctor also came back last night and advised Mum she needed more salt and to eat a little and often, easier said than done on hospital food. I was not meant to be visiting today but cannot settle here so will probably go in again today, waiting for a call from Mum anytime now once the doctors have been round. It is so difficult as I do not live local to her 150 mile round trip 3 hrs travelling, last week I went every day this week I was going to do every other day. I will update later once I know more. Thank you for listening. On the subject of a specialist nurse, Mum has never been asigned one, after her first op February 2011 I enquired and was told the name of the nurse, when we went to the hospital I asked who this nurse was and was told that's me, Mum had seen her on a few occassion but she had never actually advised Mum who she was or what she was there for, twice Mum has called her and she has never called back, so now if Mum has a problem she goes to her GP.

    Sue

    x

  • Hi Sue,

    On the hospital food front, it may be obvious but....when I was in hospital my husband bought a food thermos and he made rice (spiced pileau or saffron) and mixed in things like salmon, bacon or meatballs. Lovely warm supplements just as I was starting to eat again. Things he knows I like. You could do it with an omelette or scrambled eggs I guess. Also you could make some sandwiches she may like..chicken or boiled eggs. Just a memory from my experience. Avoid potatoes though...they bunged me back up and I had to go back off solids again for a day. It put me off mashed potatoes for the rest of my life. I called it "mash gate".

    Love Lizzie

    X

  • Lizzie,

    I spent the 4 hours yesterday waiting for the stoma nurse to call, guess what? no show, we saw the doctor and he was ready to discharge Mum but because the stoma nurse had not seen Mum he said she had to stay and wait. I called the hospital this morning and asked for an appointment time for am today, luckily they had a slot at 10.30am today, the nurse advised Mum had had the same as you an ileostomy. Now have to wait until tomorrow and hope that the doctors are happy to discharge her. The doctor was helpful and answered my questions, the main one being that when Mum had her hysterectomy Feb 2011 they advised there was a growth in her upper left quadrant that could not be removed, it now appears this growth is what has caused Mums bowel obstructions. He said the surgeon advised it was in-operable but another one said he was willing to give it ago. I found out that he Dr Brendan Moran is one of the best surgeons for this procedure and so pleased he was there that day. I am sure Mum will pick up more at home where she can eat what she wants when she wants to, obviously it is all going to be a huge learning curve for her. Just hoping nothing goes wrong tomorrow that delays her release, she is so eager to get home.

    Will update soon, hope you are okay!

    Best wishes

    Sue

    x

  • Hi Sue,

    Things sound much improved regarding the vomiting, so that is great news. I agree once she is home, the food situation should be much easier. I'll keep everything crossed for continued improvement and a return to home over the weekend.

    Hang in there.

    Love Lizzie

    X

  • Lizzie,

    The doctors have just been round to Mum and said she has to wait for blood results now, yesterday it was the stoma nurse we were waiting for. She is desperate to be out for my 50th tomorrow, she organised a party at Newbury races and this is what has been keeping her going for the last week with an aim for something, I think if they do not let her home and she misses it that will be a big blow to her.

    Fingers crossed for her xx

    Sue

  • Mum is still in hospital, 2 of her blood results are raised, one i think is the white cell count, which to me means an infection of some sort, but she has not been put on antibiotics, the other I think is ESR, inflammtion marker. They have agreed that she can come out for the day tomorrow 9am - 6pm and if the blood test taken tomorrow morning is still the same at 6pm she will have to stay in longer, if it is okay she can go home. Not ideal but at least Mum will be there with me on my birthday something she planned 3 months ago way before any of this all cropped up.

    Take care

    Sue

    x

  • Hi Sue,

    I hope you had a lovely Birthday with your Mum. What is the situation now?

    Love Lizzie

    X

  • Lizzie,

    The hospital took blood Saturday morning and then allowed Mum home, it was a bit of a rush for her to get ready and then the journey to Newbury approx 30 minutes by car, but I was over the moon that she made it. We had a lovely day even picked some winners, but the most special part was having Mum there. She was very tired by the end of the day and was dreading calling the hospital for the blood results. In the car on the way home she had really bad back ache it went into spasm, unsure if this is because of low salt, looking into finding out more on this for her. Mum called the hospital and they were happy for her to stay home, hooray. She was dreading them saying she had to go back in.

    Lizzie, did you have a follow up appointment with the hospital after your surgery? As Mum did not get her discharge papers on Saturady I was wondering if they may make an appointment for her and put it in the post.

    Thank you so much for thinking of us on Saturday.

    Best Wishes

    Sue

    x

  • Hi Sue,

    My bowel resection was part of my initial debaulking, and so yes, there was a follow up. I am glad to hear that you had a good Birthday together with your Mum. Don't forget to give her another target to aim for :-) Great news she is back home again. I will be willing her to go from strength to strength.

    Love Lizzie

    X

  • Hi SusanC. I don;t mean to be rude or too personal but my mum is in the same situation. She has PPC cancer, which is a form of ovarian cancer. She was doing fine and they were getting her ready for chemo but then suddenly her bowel got obstructed a few weeks ago and the hospital have given up. The obstruction is not a problem, the chemo will fix that but nothing can be done to restart her bowel. I have asked and asked and they said it was inoperable but i have been reading the story of your mum and see that it has been done. I dont want to be too personal but time is really really running out and we have no idea what to do, if you could let me know the name of your surgeon or even hospital and whether it was a success. I am so sorry to do this but we are absolutely desperate now.

    Many thanks,

    Amalia

  • Amalia,

    So sorry to hear that your Mum is also having a rough time. My Mum was operated on at Basingstoke hospital, she was also told it was in-operable but was lucky to have Dr Brendan Moran have a look and he said he would give it a go, but may open and if to extensive would close and that would be that. She came through the op in March of this year with an ileostomy, was told that she did not require chemo until symptoms appear. But now looks like they left her too long as she now has another blockage, this time they will not operate and have told her chemo is her best chance. But all she does is be sick after eating and drinking.

    I do hope this is of help and if you need to know anything else please do ask.

    thinking of you and your Mum.

    Sue

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