Post cholecystectomy day by day diary of recovery

Oh that's brilliant news my lovely. I am so pleased to hear that. Please keep me updated when you have had the operation. And also keep in mind the day by day post in case you think things aren't normal. It is a long winded recovery but if you rest as much as you can and otherwise fit and healthy you will be back on your feet in no time. X

Oh thats good, There's nothing worse than just waiting for a date but at least you have one now and the time will fly by.

Keep us updated and good luck xx

I can't find the post. But I'm sure you Said you had a call this afternooon? The 24th right? If that's right I'm so pleased to hear that. The time will fly it's not that long away now 😊

Yes hun... the 24th it is! Can't come soon enough... had bad night last night... vomiting & nausea... fed up now... I'm in bed off work today... feel rubbish.. xx

Aww no 😞 I'm so sorry to hear that. I can't say I miss those days. It's not so long to wait, it's a just a case of managing the best you can until then. I was told when I was in hospital to try not to eat for a while to give the gallbladder a rest. I'm sure you don't feel much like eating feeling this way anyway but they would literally make me go all day without anything. Just small amounts of water often. I do hope it doesn't last and you feel a better soon. It does become draining and you do feel fed up after so long of suffering and it puts a huge downer on you. I do hope you feel better soon though, just rest up and take things easy. Xx

Hi Kelly. Sorry to hear that the pains have come back. I am 9 days post op so only 1 day behind you. I can understand completely how you feel. What you need to remember is that the gallbladder is an organ and although we are told we can live a perfectly normal life without it, it still also played a vital role in how the human body works. I'm no professional, but I have done enough research on before and after surgery to have a good idea about problems/ complications etc. Firstly, remember to still take things easy as believe it or not, it is major surgery. (Words direct from my dr/surgeon) give your body plenty of time to recuperate. Secondly, I've stopped taking pain killers after day4 so have had more pains than not. More so to not get so used to relying on pain relief in the hope I could get back on my feet more quicker and knowing what pains I could do things with. If that makes sense. Your body is still adjusting to not having the gallbladder doing it's bit of work that is does. Changes will happen and need to adjust to that change. Stick to a healthy low fat diet, rest when you can. The pains where the gallbladder was I have had more for the last 4 days. I believe that's normal but of they are really bad please get a second opinion by your gp! I have just come from my 4th visit seeing the nurse for dressing change and expressed a concern with the pain in that area which is sort of spreading to my back. She did say that it is normal, but the extent of the pain should really be given an opinion by a dr. I'm not too worried as I have that reassurance that it is normal, but at times it becomes uncomfortable and hard to cope with. I'm sorry this is such a long reply I don't realise how deep in thought I get. Thirdly, keep in mind the recovery process can take anything from 4-8 weeks before you feel more normal than not. I've been very very emotional over the last few days as I stated in a previous reply on this post and couldn't work out why. I'm glad I'm not the only one but it isn't nice to deal with. Just give your body time to fully recover and get an appointment with your dr. I don't think we are given enough information on what to fully expect post op which gives us little worries with things going on. I wouldn't worry, and it's also a good thing that you have more and more better as each day goes by but still don't over do things. I don't listen to my own advice and have suffered more doing things I shouldn't be doing. Keep me posted on how things go and I hope you're feeling loads better soon.

Sonia xx

Also, I've lost over half a stone since I've had my op. That's a lot of weight to lose in such a short space of time. The major change your body is going through with coping without gallbladder and losing weight can also play a part in moods and pains. I'm currently starving myself as everything I am eating is literally going straight through me! It's uncomfortable and extremely upsetting as I constantly feel hungry but scared to eat at the same time. It's a tricky situation.

Hi, I am 20days post op. My recovery is slow and tired always. All the time I want to lay down but after every hour I try to go out and walk around.

But I am having a little problem that after every couple of days I have low fever max 100 but then after some time it gone. Is any one have fever after op?

Hi akram. I can understand the tiredness I am the same. This is a completely normal post op symptom. As for the fever, being 20days post op I don't think it is definitely to do with the surgery. I'd personally be more worried if it was within a few days of surgery. I had a slightly raised temp for the 1st few days but it wasn't an alarming high. Have you felt unwell at all or had a cough/cold at all? How long has the fever been going on? The fact they it goes down is a good sign it's when it's constant it's not so good. Make an appointment with the dr and seek medical attention if things are bad or you're worried. I hope that helps. Do that and let us know how you get on x

Thanks a lot for good suggestions. I will return after having some progress.

Hi Katherine how are you getting on? I've not been great, blood pressure is still low and I've still not been able to get an appointment with the dr. I phoned them again this evening to get a phone appointment but the dr doing calls was on a home visit. My partner has finally noticed that things aren't right. He can see my weight loss and I overheard him on a phone call earlier saying he's quite worried. I'm going to call docs again tomorrow and insist they book me in because I feel so weak. I'm ok though thank you for the message 🙂

Hope you're doing ok and still resting up

Sonia xx

Oh Sonia, I'm sorry, I was hoping you'd say that you've been at work. 

Yes I think you need to speak to someone very soon, getting appointments these days seems to be a nightmare. Definately push for that call maybe they'll ask you to come in. My hospital phoned me yesterday to check up after surgery and she said that I could phone them at anytime but if I needed to see someone its best to go back to my gp but its obviously not that easy in some areas.

Have you lost alot more weight since we last spoke? You haven't fainted again have you?

I'm not so good today, its really painful and I feel so tired and I'm still getting that pain in my back and shoulder blades which gets worse after food but hopefully I'll be better tomorrow but it all seems to take such a long time or I'm just impatient as I'm always so busy.

Let me know how you get on, I'm not going anywhere, just resting as you say!!

take care Sonia xx

 

Hi Katherine, sorry for the delay in replying. I've been to work this time. Wasn't a great idea as I'm still so exhausted all the time. Still haven't managed to get into the dr and bowel movements seem to be getting worse. I have been sick a little today and last night. And haven't eaten since yesterday. Not being able to eat and get any benefit from it is a pain. I weighed myself this afternoon and have lost 3lb more since I last spoke to you so it's still coming off. Literally 15 minutes after eating I'm running to the toilet. I haven't collapsed anymore but blood pressure is still low. I've got my own machine at home and need to keep a diary for my cardiologist so they can decide what the best course of action is for medication.

The pains will get better I promise. It's only just over a week and although it lasts a while, once it starts to ease it will get a little better as each day goes on. I still have minor pain in my back and shoulder and where the gallbladder was slightly, but that's more when I do too much! I can't take the constantly feeling tired. Or doing the slightest thing and feeling like I've run a marathon haha. You can do light activity now can't you? That may help with the pain, being a little mobile may take your mind off it. But don't over do anything.

I'm suffering with quite bad heartburn at the moment but the upside of all of this is I no longer have the pains I was experience with the gallbladder. I think I just need to give my body time to readjust to things. In the meantime I am going to start taking some supplements to help with getting some goodness back in my body.

You're definitely not impatient. I was exactly the same. It's the knowing you can't do much when you're normally active it seems to drag. Also the pains you're experiencing after eating could also be from swelling you currently have inside. Don't forget it's still quite soon after the op, it will getter better I promise it's just going to a little while. I understand now why they told me 6-8 weeks!!

I hope you're well otherwise and feel better today. Take care of yourself xx

Hi Sonia, oh you really must eat something, you know that not eating can make you be sick as well as over eating. You must go and see your doctor about your bowels as I know this can be a problems after gallbladder removal but they can treat you.

As for work, I know that you have to and I totally understand that but try not do a full day but just a few hours, you're better doing that every other day to give youself a rest inbetween you really don't want to make yourself worse, I not being harsh but I am concerned about you as I know how its effecting me.

Thats good that you haven't fainted again, we've got our own machine too as my husband has high blood pressure but I used it the other day as I felt so light headed, it was low for me but not too bad.

Yes I am getting tired really quickly even the simplest of tasks like getting some washing done is hard work as I've got to go up and downstairs and that does make me light headed. I did a silly thing tonight and carried the hoover upstairs, not a good idea as I've been suffering ever since.

Heartburn seems to be something that I've got away with compared to alot of people with gallbladder issues.

Yes I'm better today than yesterday, I really wasn't very good yesterday but it is a very slow process isn't it, I really didn't realise.  I do think that once I start to put on weight again that it'll help greatly, I am monitoring my weight to make sure that it doesn't drop anymore. I crashed out this afternoon which has been unusual for me to sleep during the day but I haven't been sleeping well so its probably due to that. Unfortunately I still get quite alot of pain which again gets worse after eating but I know things are probably a bit raw inside.

Look after yourself Sonia and don't over do it, let me know when you've seen your doctor. take care xx

 

Hiya, I did eat, it's just to a point where I feel better off not eating. I know I'm probably just over reacting but the fact it's just draining me doesn't help. I was meant to have an appointment with the nurse today but she was off sick so had been rearranged for Monday. I will be phoning first thing Monday to get an appointment to see the dr as well. Fingers crossed I can get one!!

Oh no you really mustn't do that! I learnt the hard way doing the exact same thing. The hoovering and washing will still be there in a week (as much as it pains us to let it build up) I was the exact same, but you need to just not do that. I know exactly how you feel when things need doing and it becomes frustrating when things like washing cleaning hoovering etc need doing. But it's not going anywhere. Concentrate on getting yourself fit and healthy before you go pushing yourself. It's weird because I was exactly the same as you yet I never listen to my own advice!!

It is a very slow process but it will be even longer if you don't allow your body to recover properly. Take it from someone who rushed straight back into everything haha it didn't do me any favours. How much weight have you lost in total? The sleeping side of things, morning or afternoon, is good for you. You must have needed it if it's not normal for you to do that. I found sometimes having a sleep in the day helped as I was also very unsettled at night. I would at least give yourself until week 2 before you get up and do more. Honestly, even if you feel free from pain, it would take for one awkward moving forgetting, and then you're back in pain again.

I am ok, my partner treated me to a Chinese this evening. I didn't eat much and probably not the best thing to eat. But last time I had a Chinese I ended up in hospital with my 1st ever severe attack. And it's nice to be able to eat anything and not have the pains I initially had with the gallbladder. I was only eating plain boiled rice for days but gave up to be fair because it wasn't helping. Drs, Monday, my aim is to insist on an appointment more now for reassurance to say it's normal or not. I'm struggling to even get out in the mornings. My son was late for school 3 days this week 🙈 He's never late haha but again, because of the toilet problem! I think because it seems to have been for so long and not getting any better it's seeming like it might stay that way! It's worrying but I think it's just a temporary thing that I hope will get better In time! Who knows. Anyway I am finally in bed after a ridiculously long day, also, work has been ok, I have been doing only a few hours and going at a steady pace!! Time to try and get some much needed sleep I think. I hope you manage to get a better nights sleep than normal. Will keep you updated and stop dragging that hoover around. Tell your husband to hide it hahaha 😂

Speak soon

Sonia xx

Bless you Sonia you are having a rough time, can't you push for your appointment sooner x

Hi Sonia, its funny isn't it we're all telling each other to be careful and not rush into getting back to normal yet we're hopeless as listening to ourselves!!

Yes you  must push for that appointment, really push the point that you've recently had surgery as that should put you up the queue. My surgery the doctors do telephone consultations to see if you need to be seen, I don't know if yours does this but it is helpful. From everything I've read and I've done an awful lot of that, that problems with bowels is very common and sometimes takes a while for the body to recover.

Oh that sounds good, I haven't had a chinese takeaway for ages, our chinese is pretty good and will cook  the food using that oil if you ask for it. Hopefully it won't be too long before I can try one of those.

Please take it easy at work, you don't want to overdo it.

I've just had a letter from my surgeon today and I've got an appointment at the end of this month so at least thats not too long to wait. I'm still in alot of pain and sometimes it feels worse than it did, that's why I'm not sleeping too well as its alway worse at night isn't it.

As to the hoovering, I've just put it in the spare bedroom and it can stay there for the time being, it really was too heavy for me to lift up the stairs and its hard to push. My husband doesn't like the hoover!, but he is very good at cooking which suits me fine as he can cook me some lovely things to get me back into food again.

Let me know how you get on at the doctors? Look after yourself xx

HI katherine, my drs surgery does do phone consultations but when I had phoned up the other evening just basically saying I can't cope anymore

They said the dr on call was doing home visits. I haven't had any contact with anyone from the hospital or even a follow up appointment which seems weird as most people I know who have had the surgery have had this. The Chinese last night was probably the most I've eaten since I had the surgery and I have been to the toilet 7 times today already. I had a broken sleep but eventually got out of bed at 11am and since then have struggled to be too far away from the bathroom.

You are right we give the advice out but never listen to ourselves haha. Something maybe we need to learn to do. You really must not do too much your recovery will take a lot longer. Both myself and my partner are going to ring the drs on Monday morning so if not one can get an appointment the other can!! Apart from seeing the nurse for my dressing change there hasn't been much medical support. I have misplaced the paper work I was given when I left the hospital so I don't even know who I can call. It's an annoying and very frustrating big situation at the minute. I'm going to stick to boiled rice not that it made much of a difference but at least it shouldn't make things worse. I don't know anymore.

Aww my partner on the other hand and cooking don't mix so well, it's my job normally. But as for the hoovering or house work that will all be there still when you are much better so lay off those jobs until you are up to it.

Pain is always worse at night when you feel more relaxed which is also a massive shame because it's the only time you are able to really do it. Can't win haha.

It will improve and you will soon make up for the loss of sleep you've had. Just takes a little while.

Will keep you posted on the drs visit when I eventually get there!!

Take care of yourself too

Sonia xx

I'm glad I'm not the only one thats sleeping in but I suppose thats normal when you're not sleeping during the night because of the pain.

I know the literature I had from my hospital which mainly covered those with gallstones says that they don't do follow-up appointments unless you need one. Why don't you phone your consultant's secretary and see if you can get an out-patient appointment but it maybe better if it comes via your gp if you can get to talk to them, hopefully you will and then you can get yourself on the mend again.

I'm really suffering today with pain in my back and side under my ribs, I just need some respite from it.

Good luck with your doctors visit, hope you get through!

take care 

xx

Hi Katherine

Sorry I never replied sooner. Have had some other issues I've needed to be dealing with. How are you getting on and the pains? Any better? I hope they are. And also hope you are still resting.

I managed to get an appointment with my gp yesterday. They have asked me for a sample to make sure there is nothing else going on. They are a little concerned about my blood pressure but it's nothing new to me. Also given me loperamide which I started taking immediately. I'm hoping this works. They want me back in 10 days to see how things are going and hoping my samples are all clear.

I do hope you're doing ok. Speak soon.

Sonia xx

Not to worry Sonia, I did wonder if you were working and wasn't going to send you a message tomorrow if you hadn't sent this.

Well that sounds a bit more positive, are you feeling any better now you've started  taking the new drug? I expect if there's anything wrong with the samples that they will phone you anyway, as mine do. They only take a couple of days to deal with the samples so they would have the results either Friday or Monday at the latest.

Well I went upto the village post office today and I've been shopping with my husband tonight it was a struggle but the store was quiet at this time of night which made it easier. I'm still getting alot of pain and having to take painkillers again. Sometimes it feels worse than it did before and I've been having pain in my left side as well as my right now. I'm eating ok but only small amounts. Did you find that weight didn't go on very easily afterwards?  I'm still the weight I was after surgery and I've been eating.

I been working from home but not alot just the urgent stuff, how are you getting on? have you been working this week?

Yes I have rested and fallen asleep on the settee a few times!!

Let me know when you get your results, take care xxx

Hiya, yea a little more positive. The dr I had seen I haven't seen in a while and even mentioned I had lost a lot of weight. They were quite thorough with me. I have my own blood pressure machine and they did ask if I could go daily just for a check but I am now keeping a diary at home. I haven't sent a sample up yet as I have been working so haven't really had the time. I should take a little longer off work but I just can't do it. I have however done the sample today and taking it up on my way to work so one day next week I should imagine it will be back.

Glad to hear you got out for a bit, are the pains still bad? The pain feeling worse at times than before I had also so I should imagine it's normal? If they are that bad maybe make an appointment with the drs. I must admit I can't really answer the part about putting weight on as I've lost more than I have ever lost in one time I've not put on a single bit of weight since the op.

I'm feeling ok thank you, still very exhausted after doing stuff which is normal I guess. Everything just seems to be a chore at the minute. I've been working almost everyday so not had much time to chill out. Then after picking my son up from school I'm home doing it all at home. My dad has been having problems with a younger sister of mine also and he isn't in the best of help so dealing with that at the minute. I have a meeting at her school on Friday in the hope they can help because I just physically can't do it on my own!

Sorry again for another late reply and I do hope the pains have eased a bit by now. Take it easy.

Sonia xx

Hi Sonia, you sound a little better. Yes we've got one of those blood pressure machines which my husband uses to keep track of his. 

Yes its good to just have a walk down the garden and I went to the supermarket the other evening, I was holding onto the trolley but I don't think I could've done it during the day when its busier and I definately couldn't lift the bags!!

I'm still getting alot of pain so I'm just waiting now for the gp to call and hopefully I can get some sleeping pills as well as the pain is worse at night. I think I've lost about a stone and a half which is far too much for me, I haven't been that small in years!! 

Don't forget to have some rest even though your working. How are you finding it? Work doesn't seem to stop when you get home does it. Oh dear I'm sorry you've got other issues when you really need to concentrate on getting better yourself but thats family isn't it, you do what you need to do.

Don't worry about late replies I know you're busy, I just want to see how you are and not overdoing things.

I hope you manage to get things sorted with your younger sister. Let me know when you get your results back. 

take care xx

Hiya Katherine.

I'm really sorry to hear you are still in pain. I can't complain mine are pretty much gone now but still had them around the same period of time as you have now. I really do hope you're feeling loads better soon it's horrible being unwell and in pain. In the long run though fingers crossed you will feel loads better.

I am at the moment back in hospital unfortunately. Have been since yesterday afternoon 😢 On a drip for dehydration and also given some fortisip shakes because I literally have no goodness in me. I had a meeting with some teachers at my sisters school Friday morning and once I got home after that I literally fell to floor and didn't wake for almost 3 hours. I have been given midodrine to help with raising my blood pressure as it's become dangerously low. I'm hoping I can go home tomorrow but even on the medication it's taking its time to rise. I've been seen by gastro docs regarding the bad tummy and toilet issues and they are also running some tests. It's become quite bad now and also blood in my stools! I feel so down at the minute it literally feels like one thing after another. I'm currently struggling to sleep with a horrendous headache and a crazy noisy lady in the bed opposite haha! There's always one.

How did you get on with the drs call? Did you manage to get any sleeping pills? Pain is worse at night as it's when you're most relaxed which is so annoying when it comes to sleep! I had been doing the same with shopping, going late evening or online ordering. Definitely much easier!

Do hope you are managing to get some sleep now.

Speak soon xx

Oh Sonia, I didn't expect you to say this, poor you. I know you've been worried about your blood pressure, maybe now someone will take notice. Do you think this is because you haven't fully recovered and went back to work and the family issues that has you very stressed. Hopefully you can go home tomorrow. Lol yes I know when I was in hospital years ago in a ward with lots of very elderly women and I never got any sleep it was awful and theres always one who won't stop talking to you when you want to rest!! Oh the headache will be due to the dehydration as I get that if I haven't had enough fluids.

I had to go in and see the doctor as they wouldn't prescribe anything over the phone, he did a thorough job, examined me, listened to my chest but I knew he didn't know what it could be as I'd had my gallbladder out but he did give me some medication which is all I wanted. Couldn't have sleeping pills as I'm already on anti depressants so he recommended I take 2 of my pain killers at night and he gave me some naproxen (anti- inflammatory) as I wasn't taking any of those, I don't know if either are actually helping reduce the pain but it is helping me get to sleep which is what I needed. Not long now until my appointment so I've been doing alot more research encase I do have this oddi dysfunction. Yeah we always go shopping late, my husband comes with me as he loves food shopping when I hate it but then he does all the cooking as he finds it relaxing after working all day.

Now look after yourself so that you can get home and relax in your own surroundings and I'll speak to you again. I hope they can give you some answers.

Take care xxx

 

Hi Sonia, just wanted to see if you're back home after your ordeal. Are you feeling any better. 

Now remember not to over do it! and relax.

Let me know how you are? xx

Hiya Katherine.

I am now home. They let me out this morning slightly reluctantly as my blood pressure is still very low. All the samples I had done have all come back normal. It's purely just the bile that would normally be stored in my gallbladder is causing the vibrant toilet trips. I am on loperamide for this but am terrible when it comes to taking medicine. If I forget to take them then I'm not good. The drs want to see me in a week but other wise just home resting at the moment. I have been told to take some more time off work and that I have pushed myself way to much too soon! It's so hard being self employed though.

How are you doing? Glad to hear the drs have helped by giving you some meds are they working for you? How is the pain side of things now? Mine have pretty much all gone now although one of my wounds had a stitch hanging out and has now become infected so am also on antibiotics too!

It's seems to be never ending at the minute lol but I am ok. I need to keep a diary of my blood pressure every 4 hours which is a pain but other wise ok

I do hope you're well xx

Hi Sonia, glad to hear that you're back home now. At least they're now going to monitor your blood pressure.

I think gallbladder removal takes alot longer that everyone expects, I'm still not right but you read of others that are back into normal life without any problems whatsoever. Perhaps it depends how much its taken out of you before surgery as we're not at full strength!. 

I walked to the village post office today, which caused a bit of pain then I drove for the first time, as my husband was really short of staff and so I popped in for a while. I wasn't there for very long a couple of hours I suppose but I'm really feeling it now, I've got awful pain in my left side in my back so I'm just resting up now. Still getting the right sided pain too and feeling of nausea which just gets worse throughout the day.

I've been having to take senokot as I'm the other way but some of that is the medication as that causes constipation and I had problems with that before surgery. 

I managed to pull out a few bits of the stitches as it was healing and then put antiseptic cream on it as some of my belly button incision wasn't healing as well as it should but its ok now. I do find that the ones on the ribs hurt if I catch them awkwardly but they are healing on the surface.

It does seem to be never ending doesn't it, mine's 3 weeks tomorrow and I've got an appointment with the surgeon next week so I'm expecting to undergo some more tests.

You take care of yourself, I know its difficult for you being self employed but your health is more important. My husband pays into a scheme so that if he's off for a long period of time they pay out so that you don't loose too much but it doesn't help the clients does it!?

As you're meant to be resting now keep me updated with how you're getting on.

Look after yourself xx

Well it's been established that my blood pressure is worse than the drs/ cardiologists had ever realised. I've been to a&e many times for falling and Injuring myself and always been sent home with nothing accept advice. I think something is only now being done because as soon as post surgery was mentioned they couldn't do enough! I'm still collapsing but unfortunately nothing will stop that. I just can't believe that 5 weeks after I feel worse than I dose before haha!! It's crazy.

Hmm maybe you're right, those who suffer more pre surgery have a longer recovery. Who's knows but either way it's horrible lol

I had pains in my left side back and found personally it was more pressure from taking strain off my right side. If that makes sense. The trick there is to do little things often. I found that helped. I was stupid and started driving 5 days after surgery. Well at least you are doing a little more now, but still go at a steady pace.

I'm going to do my best to rest up for a while now because I can't really afford to be laid up a great deal longer lol. I've had enough now

Xx

Hi Carmella & Sonia

I'm writing to you both on behalf of Carol, who as you know her daughter is in a bad way at the moment after gallbladder removal. Her daughter had a endoscopic ultrasound on Monday which showed that her bile ducts were clear, she didn't have any stones hiding anywhere and that she didn't have pancreatitis, this means that she has type 3 sphincter of oddi dysfunction. She's got an appointment with her specialist on Thursday as now they know its type 3 that they'll do botox injections which will hopefully control the spasms so that she can have some respite from the constant pain that she's in. They'll also going to do another HIDA scan but this time concentrate on her stomach and oesophagus as they're saying that it spasms up too. 

Unfortunately after the first message Carol sent me she later sent me another saying that her poor daughter was back in a&e as she had collapsed which they believe was due to the test on Monday.

Carol wanted me to say hi to you both and that she does read our discussions but she's not always able to reply.

?xx

Hi Sonia

How are you feeling today? I bet it better than being in hospital at least you can potter around your own home and not have to have a loud person in the next bed!

I'm so glad that they're now going to take your low blood pressure seriously, its about time from what you've said to me.

I know its a nightmare isn't it that we're all feeling worse after surgery, I knew I would still have problems but not like this. Perhaps its because we all have other issues, I don't know as there are thousands of people that have this operation every year and don't have the issues after surgery.

I hope that you're looking after yourself and your not going to push yourself too hard too soon as you don't want to be off longer than you need too. 

I'd never thought of that about the left sided pain, if it is that makes it a little easier to handle that its not anything more serious.

Are they going to refer you to a cardiologist to monitor your low blood pressure?

Let me know how you are today and relax xx

Hi Katherine,

Thanks for posting this!  I've also been following Carol's daughter's ordeal.  I hope that this means she'll be feeling better soon!  xx

Hi Katherine.

Thank you for letting us know about this. Can you please send on my bestest wishes to both her and her daughter. And am terribly sorry to hear this. I don't know loads about the condition but I do know someone who has the same thing. I have seen her on and out of hospital and also having Botox. The treatment took time but she is living a much better life now that she was before. If you do speak with her just mention that I am thinking of them both thank you for letting me know xx

I have spent most of the day catching up once again on some bits at home. But taking things easy at the same time. I am going to be seeing the gp for a short while. No mention of being referred to a cardiologist. But then again I've been there before and gotten nowhere really. I am ok though. The collapsing has eased massively thank goodness. Blood pressure is still on the low side but getting a little higher. Apart from having an infected sore insision scar I'm doing ok.

How are you doing? Are the pains any better?

I do hope they are and recovering more and more as each day passes

Best wishes to you xx

Hi Lynda

Yes so do I, her daughter has really being going through it recently and is finding it difficult to see how to be positive so hopefully she'll get some encouragement on Thursday.

I expect Carol is reading this but she's finding it difficult to reply when so much is going on but I'll let her know that your following her progress too.

xx

Hi Sonia, Yes of course I will. I know she will be following our discussions so she will find it useful to know that someone we know has had this treatment.

I will pass on your kind wishes to her

xx

Hi Sonia,

The main thing is that you're starting to feel better just remember not to overdo it, you don't want to be in hospital again.

I'm ok, I'm still very sore with pain in my right side which just gets worse as I eat  and I've just eaten my evening meal so even though its all very light and low fat it still causes me pain which has gone upto my shoulder blade.

I've got an appointment next Tuesday to see the surgeon so I'm hoping he'll be able to shed some light on it all for me.

Are you having to take some antibiotics for you infected incision, lets hope it heals quickly.

Take care of yourself Sonia  xx

Thanks so very much!  I can't imagine what they've both been going through.  It is enough to make any adult want to give up!  And, unfortunately, only a few doctors that they've seen seem to know enough or care enough to find out what's going on....what some have done or said was truely despicable; especially to one who was suffering and in pain.  

hi hun ive only just seen this poor girl i didnt even know all of this had happened i hope she feels better soon is she still in hospital now? i hope they do something for her so she is not in so much pain. keep me updated on how she is getting on hun xx

Hi Carmella, Lynda and Sonia

I'll keep everything on this thread about Carol's daughter so you can all see any new information, it'll make it a bit easier. 

Lets hope that the specialist that she's seeing tomorrow (Thursday) who if I remember correctly is one of the best in the country about sphincter of oddi dysfunction, can give them both some positive news. I'd like to think that they'll do the botox injections fairly quickly to give her some relief. I know they aren't permanent  but if she can get some relief she will benefit from it greatly. I know that she is very down at the moment and Carol is trying her best to keep her positive but it must be extremely difficult when you're in severe pain all the time. I don't have children myself but it must be so diffcult to see your child in so much agony.

I'm sure that when she's able Carol will put something on here explaining everything to us but at the moment I've offered to pass on any information to you all.

Fingers crossed for her on Thursday xx

Hi, Katherine!

Thanks so much!  I know you're experiencing difficulties yourself, so it's so kind of you to do this!

It's so sad for one so young to have to go through such an ordeal!

Aww no really!? I hope you can get some advice or even help with that when you see the surgeon. That can't be right, what is it 4 weeks now or 3 and half? The pains should be almost pretty much gone by now. Just very small ones if anything.

I've had a rough few days, was starting to feel a little better 3 days ago but yesterday and today my toilet trips have become so frequent I've literally had to kick people out of the bathroom lol it's not good. Blood pressure is now stable which I'm glad of so the resting has helped. I am this evening going to start baking for a Mother's Day gift for my mother in law as I can now stand longer without collapsing. I am on antibiotics yes, that's slowly feeling better too now thank goodness. Will just be glad when I can go out without needing to rush to a toilet! 😞 Xx

Hi Sonia, Ahh thats good about your blood pressure but not so good about the toilet trips. I'm having the other trouble and having to take some senokot to help. You can get some meds for that from everything I've read. Not good if you've only got 1 bathroom like us!

Its just over 3 weeks now and seeing the surgeon next week. The pain isn't as bad today but I still now its there.

Yes I'm doing the same thing for my mum this evening, it has to be a coffee and walnut cake for mine. Don't stand for too long though you don't want to overdo it.

Have yout got to go back to hosp for an out patient appointment?

xx

 

Hi, Sonia,

I'm so glad that you are feeling better!  I remember that the doctor gave you some loperamide.  That's one of the drugs that can help with trips to the bathroom.  Another one is questran, the resin I mentioned earlier.  You might want to mention that to the doctor!

Keep getting better!!xxx

Hi Katherine,

Please let me know about your appointment!  I'm glad you're feeling better, except for the constipation!  You might want to try probiotics, too, if you're not already taking them!

Take care!  xxx

Hi Lynda,

I have been prescribed loperamide already by the gp and have been taking them for just over a week now but I'm not sure if it takes a while for them to work but I'm yet to notice any difference. I need to get an appointment for sometime next week for a review so I will most definitely mention that to them. Thank you xx

Hi Lynda

Yes I will do, its next Tuesday with the surgeon so I'm hoping I may get a few answers as he said that this op wouldn't take my right sided pain away so I was always prepared but didn't think it would be worse!

I'm finding that senna is working but yes I've got some probiotics now so I'm going to start taking them.

xx

Oh dear, you still having that problem? When I was in hospital in January I couldn't go to the toilet. I think it was 7 days before I was able to go. Senakot was very close working. In the end I was given lactulose and within an hour, well say no more lol!

Aww I think cakes are a nice gift, I'm making a chocolate fudge cake but making it like a bouquet of flowers! Most certainly got my work cut out for me lol. I won't be overdoing it though.

Let me know how you get on with your appointment next week and glad the pains are starting to get a bit better.

You take care too xx

You're so welcome.  Loperamide is available over the counter in the US.  The pills are 2 mg, and should be effective in about 45 minutes to an hour.  It's often prescribed for traveller's diarrhea because it works so quickly.  

Sometimes I need to take them, even while taking questran, because my body can still decide to get rid of everything, though my stools are better formed now because of the questran.  One 2 mg loperamide can slow things down significantly, and it usually wears off in 24 hours.  

Hope this helps! xx 

 

Yes, I started taking probiotics after I had a bad UTI a few months ago.  The one I take works in the uro/genital systems as well as the digestive.  I'm a real convert!   xx

Please also let me know about the pain on your right side.  Do you think it's Sphincter of Oddi?  Oh, I hope not!

Hi Lynda, yes they mentioned it last year and gave me nifedipine but I got too many side effects from it so had to stop. I expect this appointment is to talk about this, I know they were thinking of doing an ercp last year but decided to wait so I don't know if they're going to do that this time. Its the same pain that I've had all along right sided pain under the ribs going through to the back and upto the shoulders which gets worse on eating which is classic symptoms of this condition. Now that the gallbladder has gone or course there's nowhere for the bile to be stored which I think is why at times I'm in alot more pain its not excrutiating except when I had some chicken the other night which contained alot more fat than I realised and gave me alot of pain around the right liver probably along the hepatic ducts.

I'll know more next week.

Hi, Katherine!  

Please let me know how it goes, will you?  Not only because I'm hoping that they can help you, but because I've also had this niggling pain in my right side under my ribs every day, several times a day.  This has been going on since 2009.

My gastro guy doesn't want to even think about Sphincter of Oddi, says it's a can of worms.  I can understand, and I'm not in any significant distress, but it gets me down, you know?  

Thanks, and take good care of yourself! xxx

Yes I will. I know this can happen after gallbladder removal, I've read so many articles as I expect you have. 

Carol will speak to everyone over the weekend but she told me her daughter is going to have botox injections next thursday as her's is type 3 which is more difficult to treat as all the tests come back as normal.

speak to you soon xx

I really haven't read any articles--this site has been my sole source of info.  I didn't want to dwell on it, because I saw little hope that mine could be fixed.  

Thanks for the news about Carol's daughter!  

Look forward to hearing from you! xx

Hi Lynda,

Although the stools aren't as loose but still are if that makes sense! I'm still finding myself having stomach pains and needing to run to the toilet shortly after eating. I will give the loperamide a while longer and if no better will most definitely get some more advice. Thank you xx

You're welcome!  I'm sorry that the loperamide isn't working as well as it should be...

Please let me know how you're doing, won't you, Sonia? xx