Surgery and reduction in steroids

[Sarah84]

Hi Everyone,

This post is really about 2 things, I go in for surgery on the 20th June so I kind of want to get my feelings out about that but also about how I am feeling since reducing on steroids and to see if anyone has any advice.

I have just reduced to 20mg of pred a day, going down by 5 per week. To be honest I haven't found it to be the miracle lots of people do, it has stopped me being in really severe pain but it hasn't take it away. What I have found though is the lower the dose the worse I feel, this weekend has been terrible. I feel like I am in a constant cycle of pain, nausea, sickness and then more pain. I have a day or so of diarrhea mixed with lots of blood then it seems to be a few days when I can't go at all. When I can't go there is more pressure on my stomach which makes the cramps worse. I am at the point now where I don't want to eat as it just causes me pain. Is there anything I can take to help with constipation or is that a big no no with crohns. I only got diagnosed with this before Christmas last year so I don't really know any tricks or things I can do to help myself feel better. I have tried keeping a food diary but have not found its any particular food that sets it off and at the minute its anything I eat.

I am also feeling anxious about the operation, I've got my pre op next week so I've not had that much information on it all really but what they have said is that the scan showed the last 20cms of my instestines was really inflamed and that they would remove it and rejoin it. The surgeon I saw briefly did say I may need to have a temporary stoma to aid with recovery but that this was normal and also explained the risks in terms of leakage. This bit actually really scares me, I don't know if its because its the one thing my dad was always adamant he wouldnt have and thats stuck in my head or not.

I am hoping the pre op will put some of my concerns at ease and explain things to me a bit more. Is there anything in particular I should be asking? They were very vague when I asked about how long I would need of work and said it varies a lot.

Has anyone got any advice in terms of recovery? things I should do or eat? I live on my own so plan to go to my mums after the op for a little while to recouperate.

Any advice is greatly appreciated

Thanks
Sarah

 

[Grant]

Hi Sarah, sorry your so poorly. 1stly @ your pre op I would make sure you tell them how bad you feel. Because if your losing blood you could well be a bit anemic & they might well want to address that.
Ref. the Stoma, usually these days thats a last resort if problems occur. They have to tell you that because all the scans in the world cant really prepare the surgeon until what he finds when he/she has gone in so to speak. I was told I had a stricture a cm long & yet they took out 20cm of inflamed bowel last month.
Ref work, 6 weeks seems to be about the accepted amount of time but people do go back before sometimes. Probably depends on what sort of work I guess.
In short I hope this op gives you the relief you deserve.
Best Wishes
Grant

 

[cecilialynn]

Hello i too went through the surgery last summer, mine was a emergency surgery. They removed my colon and gave me a iliostomy bag for 7 mths. I had a few issues with leakage and kept trying different flanges till i got it right. It wasnt so bad. gave me alot more freedom. This past Feb i got my reversal and all was going good till a month ago. Have been having issues with major diarhea ,blood and cramping along with infection. There are days i wish i still had the bag. I have had no outside life in the last mth unless its doctors apts. Even then i hope i make it there without messing my pants. Eat only white products for awhile. I still stick to potatoes, white bread, white rice, applesauce, bananas soy milk( lactose intolerant) and well cooked carrotts. I eat alot of fish and chicken. Greasy foods dont work for me at this time, nor does fiber. Its good you go to your moms, its always nice to have the help and support. It will all work out ........it usually does. Good luck.

 

[Sarah84]

Thanks for the replies

@Grant - I hope that you are feeling a little better now after surgery not too long ago. I am anemic too so I've got some Iron tablets to take on top of everything else. I am trying to to get my hopes up too much that this will be a magic fix but I really hope it is. I am feeling constantly exhausted at the minute and that combined with difficulty keeping food down is not helpful. Thanks for the advice ref the stoma, I dont really know why thats worrying me so much but it seems to be on my mind a lot. I am hoping work are understanding, had to get brought home today doubled over in pain with cramps

@cecilialynn I am sorry to hear you are having such a tough time at the moment. Are they planning more surgery? Thanks for the kind words and advice. I feel very much like I've been left in the dark by the hospital but hopefully that'll change next week. I hope they can get you sorted soon and you get back on the road to recovery

 

[Grant]

Tks Sarah. Only natural to be worried @ the thought of a big operation. I dont know how long you've waited but in my experience the longer the wait the worse my worries get. Your looking @ two weeks to go so it'll soon be done & you cant start to rebuild your life.
Please let us know how it went when your feeling up to it.
Best Wishes
Grant

 

[cecilialynn]

Hi Sarah84, I just came back from seeing my surgeon. She is hoping once i get on long term meds that i will go into remisssion,otherwise she says i may have no other option but to get the reversal again and end up with the iliostomy again. I dont even want to go there as it will be for life. I too am weening off prednisone .Im down to 35mgs, but i have been on these for over a year. Sarah84 i rely on my family alot. My Mom is the best. I dont know where i would be without her. I wish you well and have no doubt that all will work out for you.I will keep my fingers crossed.

 

[Sarah84]

@cecilialynn I really hope that it all works out for you, I think finding the right balance of meds if half the battle. I went to see my doctor today and they have given me more medicines, I'm not sure if the names will be the same over there but they have told me to carry on reducing on the pred at 5mgs weekly up til the surgery and also told me to take mebeverine, buscopan and tramadol all the time rather than as and when required. They have also given me a mild laxative to help with the constipation, i've not taken that yet so we shall see how that goes tonight. Oh and some more iron tablets. I feel like all I do is take meds at the minute but its better than being in constant pain so its swings and roundabouts. I am glad you have your mom there to help, my little brother has been here this week and has been a huge help, especially since I find myself getting all emotional over the sightest things lol I hope things look a bit brighter for you soon, let me know how you get on

@Grant Thanks I will let you know how I get on. Know doubt I will have a million more questions after the pre op on monday lol