Elective colectomy for UC

Hi Maxine, I got out of hospital on Friday after they did another scope. They have sent some urgent biopsies off and I should have the results this afternoon. Since friday and have had alot of bleeding and still having a fair bit of pain and they have also torn me while performing the scope so am in a bit of pain from that. 

On the upside after putting on a heap of weight from taking prednisone, I have lost 12kg since friday when they stopped the steroids. Have to find a positive somewhere!

 

Oh and thanks for checking up on me 🌹

Hi Karen...sorry to hear u  having problematic time...u must hav a lot of inflammation going on at mo.  I hope it settles for u very soon . What dose of steroids were u on ? U poss need to b bac on them when u appear to b so symptomatic ! MJ

Hi. I have been on anything from 80mg to 2.5mg over ther past year. They werent working which is why I have completely stopped them.

i got my results from my biopsies yesterday, and surgery will likely be put off, if it happends at all. Apparently I currently have no active colitis which means something else is causing the symptoms at present so I am preparing for a heap more tests. 

Basically the only thing i havent been tested for up until this point is Endocrine disorders which is what I am now being sent for, specifically endocrine cancers.

i am absolutely devestated. My long awaited ending has been once again been put out of reach. 

Will keep you posted.

Karen I am so sorry to hear that...that is quite a blow ....wondering what is causing something is very mentally stressful. However if u were still experiencing bleeding...what site in colon or rectum was was it coming from ? MJ

Well, apparently there was a bit of redness in my mid colon but no sign of bleeding or ulceration (apart from scaring from past flares) to be seen or showing in the biopsies. The only suggestion they have is that maybe it is coming from higher up, perhaps the small bowel, and still looking fresh because everything is moving so fast.

I have a lot of random symptoms that i had just put down to side effects from medications, as well as my bloods from when i was in hospital which also add the arguement that something worse is going on.

x

Karen I feel so bad for u as u r probably feeling quite frightened being so uncertain now as to what is happening with ur body. Are they doing more tests very soon as the waiting to find a diagnosis in itself is quite scary. I will b thinking of u and sending positive vibes ur way and  please keep us updated. MJ

Please tell me it will get better. Further tests showed nothing. Got sent for a second opinion a week ago and as a result surgery was cancelled. No answers just the theory that it is not the UC.

Sunday I attend the emergency department of the local hospital. I am unable to speak and blacking out from the pain. Rude nurse after rude nurse i am eventually admitted. CPR 80, 16cm inflammation of bowel shown on Ct scan. No beds on the ward. Am then parked in the hallway for a few hours before being taken to the medical ward where I sat for about an hr before being moved to of all places maternity. I am meant to be on 3hrly endone and morphine but they refuse to give it to me even though it only takes the edge off the pain. 4 days nil by mouth and midwives are refusing to redue my drip. I am severely dehydrated and in mountains of pain. Meant to have another scope tomorrow.

Please keep me in your thoughts i feel like i am about to die. The nurses even stuffed up my meds and now apparently i am ahowing signs of kidney damage.

I cannot take much more.

Really worried about you, your symptoms are awful. How can they not hydrate you? your organs are likely to be affected if you do not have enough water and electrolytes to keep them functioning. My son perforated just after 6 cm dilated due to inflammation. Dont know how they measure this but it was after an xray, which he had daily to monitor the inflammation.

I have thought in the past that the docs dont control the pain as they use it as a measure of the disease and whether it has got worse or not.

You need to be on a ward with the correct doctors and nurses for your symptoms and disease, I hope you have someone with you to be an advocate and get you the help you URGENTLY need. Good luck to you, kick up a stink if you need to.

Hi Karen...I'm sorry to hear u r having such a horrendous time for it certainly seems to b horrendous by all accounts ! U need to get off that ward for starters as u will not b having the proper care and u also need to get ur husband mother or whoever to kick up merry hell about ur lack of care b4 u come to any serious harm . Actually can u not get ur relatives to take u to a hospital that will actually give u the correct care. I remember that happened to me in my early uc and I left local rural hospital and went to the main hospital in our local city and I was also in early pregnancy too. I got the proper pain relief and treatment once I was admitted . I am and will b thinking about u and hoping that something positive happens for u very soon .

MJ

Yep. I am really worried too but not alot I can do in the middle of the night.

I had the exact same fight last night and the dr went off his nut this morning but it seems the message still hasnt gotten through. I just lost it and now the midwife is refusing to come into the room. Is it bad that i keep kinking the drip to make her have to come in.

She refuses to listen to me explain what should be there and just goes off on her own tangent.

I will be requestin to be moved in the morning. I got good care during the day but only because that midwife has crohns so she gets it. Everyone else just seems to think I have a bug or something and dont want to make it take longer than it needs to to come

Out.

I have seen my med charts, I can see where it says what i should have and I can see where the confusion has come from.

I aways said I never wished this awful disease on anyone, but now I am not too sure. i dont want her to have it forever, just long enough to get it.

I really am frustrated by this whole process. Im sorry i really just needed to vent more than anything.

Thanks maryjo. When i get home and have reasonable internet access I will fully respond. I will be kicking up a massive stink in a few hours when the dr arrives.

I think she may have seen the complaint form in some one my papers and went into defense mode. It actually had nothing to do with her, although it

May now!

Will keep you posted

Hi Karen, is it advisable for you to go home? Ask as many questions as you can about your condition. Are you having regular blood tests to see how your body is responding? Your body needs some nutrition even if it is by a drip, are you receiving no food so as to rest your intestines. The gastro team must have a plan of some kind ask them to explain it to you. As Maryjo says get the experts either by moving hospital or asking for a second opinion. It can be so scarey as you feel hopeless and out of control but they owe you a duty of care and are responsible for your safety so keep pushing until you get answers. Prayers are with you.

I am amazed at your strength and courage but I am scared for you too. You must insist in an appropriate consultation from the correct department so you can be assessed and treated in order to keep you from any further harm. These people are not your friends it doesn't matter if you step on their toes, keep pushing until you see someone who is going to help you. There is no room for confusion or miss information, your health and safety are at risk. Good luck to you.

I no what u mean....some people need to experience the illness themselves to no how bad it can b.  I also no if she is midwife trained only she will not have a clue re uc or any IBD..I was midwife but also general nurse trained and I no from having students in my care who are doing midwifery only...they did not have a clue ! Also u will get those people nurses midwifery or otherwise who do not have an ounce of compassion in their soul for other fellow humans and I don't know what the hell takes them into a caring profession . I find and I am not totally generalising or I will b condemned for it but there is generally less compassion about now with younger newer students....maybe because everyone seems to b more focused on the endless paperwork that exists nowadays and forget the person ! Just keep kicking up merry hell and demand better treatment. Thinking of u MJ

Ok so here is the update. Please excuse if it doesnt make sense, i am on my phone and the page will not load properly.

I am entering day 7 of admission. I have gone from 27ish hrs in ED, an hr or 2 in the hallway, a few hours in outpatient care, an hr in medical, 2 nights in maternity, I am currently in surgical!

I had a colonoscopy of wednesday which showed some minor inflammation (although for the 3-4 days prior they had been filling me with steroids which surely cant give an accurate picture).

I have tested positive for CD infection and am currently on antibiotics for that.

After the nurses failed to follow the drs orders i now have dangerously low (2.1) potassium levels which I am getting iv and oral suppliments for but this is only maintaining these levels not improving them. I have started having heart palpatations and chest pain due to the low potassium.

Pain has improved slightly. Still on max doses of endone but I have nearly gone 24hrs without morphine.

Still in alot of pain everytime I eat or drink. Am currently taking around 40 tablets a day. Am very fatigued and nauseous. I am getting max 3hrs sleep per 24hrs.

The drs have been pushing for me to go home "because all we are doing is handing you medications" i dont think they liked it when I suggestes they stop just handing me meds and try to actually fix it.

I am the primary carer for 2 under 3 (one of which currently has tonsillitis) can hardly eat, sleep or move but they think I can go home. Am

I missing something??!

I am continuing to push to get transferred to a bigger hospital, but they are reluctant to take me as the specialist there basically dimissed me when I saw him a few days before I came in.

Although, technically I am not on the right ward I do feel that the majority of the nurses on this ward are on the It is probably the best ward lf he hospital.

I am curious, I am having a few symptoms that they are very quick to dismiss but I cant help but worry about them. Has anyone had any of these? Bright yellow watery bm (like urine while on sulfasalazine), my bms smell exactly the same as what I ate a few hrs earlier, deep back pain (but also a feeling of bruising if the base of the spine is touched).

Hopefully that all makes some kind of sense.

Hi Karen, I was getting worried, you really are getting a bad deal.

By CD  presume you mean Clostridium Difficile, is notoriously difficult to get rid of completely esp if you are run down, generally needs several goes at antibiotics, including a rarely used one which is expensive here in UK. My mum caught it in hospital after an op, it took a good few weeks to go completely and then only when she had the expensive one the GP was reluctant to prescribe but the others were doing nothing to stop the symptoms. There was a lot of news about it here as it became a hospital acquired infection problem and is still one that hosps have to report, some patients are kept in isolation to stop spreading.

Do you think you got it in hosp or before? Sometimes it gets out of control in a patient because of over prescribing of antibiotics. Symptoms are abdominal pain and diarroea, sound familiar? I remember my mum being doubled up with pain and passing lots of wind and diarroea. I was her carer at the time and that was 2 weeks I could have done without.

When my son was first investigated for his UC symptoms they did blood tests and sampled his bowel movements to test for infections including C Diff, which came back negative. Did you have these tests?

BM that come out similar to what went in is a sign your intestines are not working well as digestion is poor.

My son had v low potassium too as a symptom of his UC as his body was not absorbing food and he was so dehydrated, he was on a drip to hydrate him and given liquid by mouth which contained high levels of potassium, and eating several bananas a day.

My son had intense back pain, low done when his UC was so bad, unable to lie on it, as a symptom of an inflamed bowel, as it was so swollen.

All in all I cannot believe they would send you home with an infectious bacterial problem, an undiagnosed gastro complaint, v low potassium levels, and lots of unexplained pain. Your blood tests should have shown up an infection, or are they just keen to use CD as the root cause?

Are you able to eat and keep it down. At least on a ward you can get IV meds. An additional point, CD does not get killed by hand gel dispensers, hot soapy water must be used to clean hands thoroughly!!

Esp important when kids are around.

Hope things improve soon, thinking of you.

 

Yep. I had the C Diff test. There are 2 parts to the test, at first one was positive and one was negative so it got sent to Sydney for further testing at which time it came back positive.

I am pretty confident I ended up with it during my last admission a few weeks ago who they sent me home when I wasnt right.

They seem to only be treating the cdiff infection as a one off rathe than the bigger picture.

The reason I ask about the back pain is that it keeps getting dismissed for "period pains" although it is not that time.

I will try not to get too cranky re the hand washing situation. Some nurses come in with a full blown hazmat suit others gloves just like any other patient. Alot are telling visitors to just use the alcohol stuff and others are basically doing a full wardrobe change, yet they all still just let my kids wander in and out like nothing is happening. Noone is allowed near me but its ok you can go home or out for a few hrs to spread your germs around.

It doesn't make you feel that confident, does it? I am defo right about the hand gel, check that they know and understand. We have a new saying in UK hosps "Have you washed your hands" and are encouraged to ask anyone including  doctors.

We are in trouble if all women who have pain are told it's nothing ,probably your time of the month.

So you need the bigger picture reassessed by the gastro consultants. Have you a consultant that is recommended by another UC or IBD patient so you can get help from someone who has got the right credentials. They are not all as good as each other, I have a friend who fell ill with a perforated colon at a previous appendix removal site who was treated as if she had tried to commit suicide by eating sticks as one was found during the op and he wanted her to see psychiatrists. So ridiculous it makes you laugh. She was referred to a different hospital, on her request ,who found she had an untreated infection in her wound and saved her life.

Take care.

 

Hi Karen......I am sorry to hear u r still having such a horrible time. CDiff is not a pleasant thing to have by all accounts ! U possibly are having back pain due to inflammation of ur bowel. I used to get it if I was having bad flare. U having uc with C Diff on top of that will certainly do it no favours ! Possibly when u eat or drink everything is galloping through ur GI system . Sheila is right in saying at least u r getting iv stuff  while u r in hospital at mo which u do need . I hope theC Diff settles for u very shortly . It is very difficult   when u r not in control of ur own destiny ! Am and will b thinking of u and lots of positive thoughts going ur way . MJ

Hi Karen.....just wondering how u r and if u have made any progress. Thinking of u ! MJ

Hi!

11 days in and No real progress. After days of them saying they needed to try another med before looking at a transfer, stuffing up the meds and then finally them not helping, this morning they said they would contact the other hospital in an attempt to transfer.

This afternoon they came in and said they wanted to do another ct scan but the machine was broken and would be for a few days.

So i still have no idea what is happening.

They have tried me on some resource drinks but they are not agreeing with me.

Will let you know when i know more.

Hi Karen....sorry to hear things r going so slowly .Its very frustrating....I hope there is some resolution soon for u . MJ

Thanks! I will be throwing things today if they dont pull their finger out.

Hi Karen, You must be getting fed up at the uncertainty by now. I hope they are looking after you a bit better now. How is the pain and UC symptoms? Has the C diff gone away? Thinking of you.

I jusy realised it had been a while since I was last in touch. After 13 days in hospital I came home no better off. I was on 33 tablets a day and they were all doing nothing. I was put on a weeks bed rest when i got home. Weight loss 12kgs.

my whole body was hurting, i had a constant haze over my eyes, i could feel my organs shutting down.

I had an appointment with my dr 4 days after going home and he wanted to out me back in hospital as I hadnt improved. While i was far from well enough to be at home they were doing nothing for me in hospital so i declined. He reduced some of my meds, including the prednisone which was good as i could barely walk from having the shakes and the weakness that comes with steroids.

i got onto a dietician who had helped my son when he was a baby. She immediately squeezed in a home visit for me. She was put me on an elemental diet for 6 weeks which the drs previously said would not help. The drink is nasty but i feel so much better. My stomach feels bruised and my muscles ache but my vision is no longer blurry and i have managed 1.5 days  at work. I still tire very quickly but tend to have alot more energy. I am however starving and losing 1-1.5kgs a day at the moment. 

Waiting to see the dr at rpa that i was sent to for a second opinion at the end of the month. 

Oh and they found a growth of some kind on my liver that they failed to investigate or tell me about in hospital. I only saw it on my discharge notes. I had an ultrasound today to try work out what it is, will likely have results on thursday. I cant help but wonder if this could be from the sulfasalazine. 

Anyway, thats my last week and a half summed up!

maryjo, how is your recovery going?

Hi Karen, good you are home, but it does seem as if they don't know what they are doing in your hospital, sounds like a referral to another is a good idea. The are big problems when the docs throw loads of meds at you hoping things will get better as they do interact and have side effects. On top of this you are undernourished and immuno suppressed and prob anaemic. 

I know I have said it before but be aware of the signs of a DVT as that would be a complication you don't need.

Hope you get better soon

 

Hi Karen...u have had horrific time and still suffering 😱yeah u more than likely better at home . U Prob have more control at home. I don't no how u r managing to work ! At least dietitian has been of some help . Hopefully when u get to other hospital they r of more use. Bit remiss of them re info on ur liver . Hopefully u get results ok on Thursday . Dunno what possible reason is for that ! 

Yeah im doing very well...it's great no more suffering from uc.....still trying to sort out suitable bag .....there are different teething probs but gradually getting there ! 😊 hope u get urs sorted very soon than all the suffering and waiting u r going through. MJ

Maryjo, i am so happy to hear you are doing well. 😄 

i think it is helping me being busy. We are off to see an ENT today about getting my sons tonsils out. They are touching and obstructing his airway so they have to come out ASAP. Nothing quite like everything happening at once! 

Sheila, they did have me on any clotting injections in the hospital but nothing to go home with. i actually do have a clot in my hand where the IV was which i will get checked on Thursday when i am at the dr. It seems to be getting smaller and hasnt moved so hopefully all good.

HI Karen, hopefully everyone in hosp has blood thinners! and as you are mobile they havent sent you home with them, but remember the full package needs to be considered with IBD. So if you are less mobile, dehydrated and immuno suppressed you are at risk of a DVT, so dont forget to ask, easier to avoid that try and cure afterwards.

Keep an eye on  the weight loss and good luck with a bigger and hopefully better hospital. Thinking positive thoughts.

 

Karen.....if u don't mind me asking how did Thursday go for u ....well I hope and how r u and Also did u get a date for ur sons tonsillectomy . MJ

I got the results of my ultrasound. I have a haemegioma or "strawberry birthmark" on my liver. Apparently it would have been there all my life but noone has picked it up before. It is a relief that it nothing major.

As for the tonsilectomy we saw the specialist on monday. She was concerned about his jaw being small and the hospital that she operates at isnt well set up for kids so she refered us to another surgeon in Sydney. She agreed they need to come out asap. Unfortunately we have to be on a waiting list as even though we are going to be private patients it is getting done at a public hospital. Hopefully it will be done in the next 8 weeks.

Meanwhile i am really strugging on my liquid diet. I am so hungry. 1 week down 5 to go!

Good news on the liver.

Well I'm so happy to hear the liver is ok. I'm sorry to hear ur son is having to wait but at least it is not too long . R u well on the liquid diet ? It's giving ur gut a rest I take it. When and wher r u being seen again. It is horrible not being able to eat food 😔😔but I suppose if it is helping the uc symptoms it may b worthwhile. Only time will tell ! MJ

The liquid diet is the best and rhe worst treatment i have been on. I have no pain, no bloating, go to the loo once or twice a day, it is still liquid coming out but you cant expect anything else if thats all thats going in. I am still tired but I have more energy than I have have over the past nearly 12 months. The end of august marks 12 months of the start of this flare. 

but I am sooo hungry, i cannot explain how hungry I am. I want to eat everything and anything. Even the kids blocks look tasty. Haha!! 

I started on the juice drinks and they are meant to be the first step towards eating again but i had some pain and despite the higher calories left me feeling more tired so I have gone back to just the peptamen that i was originally on.

i am told my inflamatory markers are going down.

i do feel it is working but i am scared that i will be stuck on it. I really cant see myself lasting 6 weeks. It is just too hard to not eat when you arent satisfied by what you are consuming.

also still losing 500g -1kg a day 😳-

Karen u r having a lousy time ! Maybe it's the fruit part  in the juice drinks that r annyoying ur system ? Well it's good the markers r going down and shame about the continual weight loss but hopefully when u get back to food u will start to gain....I no the feeling about wanting to eat ...it's awful 😰 when r u back at hospital again to c consultant ? MJ

Just a quick notion, you could look up acupuncture for UC on the web. It is an idea.