Op 7th February now Monday 13th

Hi sheila91262

Thanks for your reply & all the very useful advice. It's good to have someone in the know.

B x

HI hope you are still feeling better. How are you coping being at home and with getting out and about!

Hi helena108

Everything has been going really well. People say I look well. Lost half a stone in weight & Sunday went out for a jacket potato lunch. Then, yesterday had a set back. My stoma has shrunk & I didn't cut the hole to bag to fit that correctly so had some soreness around part of edge. That would have been bearable but then yesterday the bag kept leaking in one area. I ended up getting through 6 bags to get them fitting & trying to stick. It got to last night & I was hitting rock bottom emotionally as my skin around red rore & burnt from stomach acids. I sat with no bag on for over an hour ' to let the air get to skin' but the practicalities of that are nil. My husband phoned out of hours number & we ended up with a 9.40pm doctors appointment at the hospital. All

this time the bag was refusing to stick to my skin in 2 places & any liquid escaping was burning my skin. The doctor said he could prescribe a cream for the soreness/ itching but all the pharmacies closed. I then pointed out couldn't put cream on as bag wouldn't stick to skin & could he possibly phone someone on a gastro Ward in hospital for advice. He phoned the Ward I'd been on a a nurse asked me to go to ward for treatment. She'd nursed me when I was on the ward & she cleaned the area & fitted a Manuka honey sample bag I'd got with me. I'd trialed bags 2 weeks before my op as have a sensitive skin. That felt a lot more comfortable. She said the stoma had ' pancaked'. 5.30am this morning awoke to find bag starting to leak at the bottom & of course burning again! This is a long story! Visit to stoma nurse this morning she thinks I need a convex bag. Re cut hole to bag to fit properly, cleaned area, used lavender wipes & a tiny amount of a cream that heals the skin. Also used flange extender on the bottom of bag. Think I'm not allergic to bag just very burnt from leakages. Got to change bag again on my own tomorrow so can get more healing cream on. It's a steep lesson to learn. Leakage can cause such damage so quickly. Annoyed with myself but stoma nurse says I've done really well & unfortunately it happens. Sorry for long explanation but think need to know things can temporarily go a bit wrong but there are answers. B x

Hi B , It is a steep learning curve. The stoma nurses should be able to help with advice. The stoma is shrinking as it heals, hopefully it protrudes enough so that output enters bag and doesn't slip back. The manufacturers have all sorts of extras too, such as curved stick on pieces to protect from skin damage from leaks. Worth contacting them direct. My son's skin became stronger over time & less sore. He ordered bags with too small an opening and cut to fit as the stoma shrinks & changes shape. Good luck. Sheila.

Glad you have been able to have help and advice from the stoma nurse and for all us making our minds up and waiting it's so helpful hearing it from the horses mouth so to speak.

At least from what I have read it can only get better and most people wish they had had the operation sooner so they could get there lives back

Good luck

Hi helena108

Just a minor setback that I've learnt from. I want to give an honest but helpful report. I'm just really annoyed with myself that I made an error & this was the outcome. I was also worried the stoma nurse would be angry with me- crazy I know! Of course she wasn't. She said it's early days & as my stoma is shrinking , changing shape & my stomach contour is changing it's just happened. So hope my experience helps as things to be aware of not to worry anyone. I must say it's amazing to only go to the loo when you want to! All the rushing to the loo & worry when out & about have gone!

Seeing the surgeon on the 8th March for second appointment and hopefully set a date as have made my mind up to have surgery. Have only been uc for 18 months but tried all meds and am steriod dependant just fed up with all the symptoms had always said that surgery was the last resort but have had enough and would rather be selective and not be an emergency without meeting the surgeon in advance.

Hi helena108

Read up about surgery from good websites i.e. U.K. ones for Crohn's colitis. They've got diagrams of different types of surgery. Don't look at images on line posted by anonymous people.. They are Nothing like your outcome. I liked my stoma when I saw it! Take a family or friend with you if possible who has a notebook with all your questions & they can jot down the answers. It's amazing how you forget to ask things or what they said. If you've any questions from me I'll be happy to answer if I can. B x

HI Just to see how you fairing now! are things on the mend so to speak. Are you of meds and apart from the stress of the operation are you starting to feel the results (fed up with the exhaustion all the time). How are you getting on at home do you gave someone with you

Take care x

Hi helena108

So after my setback last Tuesday I was feeling a bit down. The stoma nurse wanted me to change my bag at home on the Thursday. I had a headache all Wednesday after seeing her & through the night with worry. I decided to 'go for it' after my shower & the change the bag in the morning just in case had a problem with it not sticking & I'd need to ring them & possibly go back to hospital. Got the bag off, cleaned area & applied soothing cream. The skin around the stoma is very red & sore looking but No stinging when cleaning & applying soothing cream. Got bag on & used flange extender bottom & top! Held bag on for ages & used warm air from hairdryer to try to help even more. Was getting paranoid it wouldn't stick or I'd do it wrong- but I didn't! So confidence back. Spoke to stoma nurse on Friday morning & she said shouldn't need flange extender at top of bag as well- but I was taking no chances. Told to change every other day now until I see her next Thursday 2nd. So, took bag off on Saturday & blow me down Stanley has got smaller again. So had to resize the cutting of hole which isn't that easy as an oval shape. Looked up for advice & can use template they give you to get length & width so tomorrow when remove bag am going to try that.

I'm still on meds. 20mg steroids daily now reducing every 5 days by 5mg until I come off them. I also take a gastro resistant tablet & calcium. Haven't been taking painkillers except last Tuesday. Felt brighter today & doing more things. My husband took time off the week I was home. It nice to have company. The next week he was working partly from home & partly at office. Next week the same but I'll be on my own for 2 days. That's a good time to arrange visitors as the day can seem long. I also enjoy craft so today I've got out some small embroidery & crosstitch projects. Also got my date to see the surgeon again on 28th march which is about 8 weeks after op. B x

Hi

Hope that all is still going well for you!

How are you getting on with bag changes and do you feel that you have more energy and not drained all the time have they taken you off meds. Any info appreciated

All the best

Hi helena108

Thanks for your message I was also wondering how you were. I had my 7 week post op consultation about 2 weeks ago. The surgeon said they examined my removed bowel & no cancer detected. They have diagnosed me with Indeterminate colitis Crohn's. Which means they are uncertain which condition I have. More than colitis but can't say it's Crohn's. I wished I asked more when there as it's a confusing diagnosis. They said they will want to see me again & also the Ibd doctor will want to see me in 3-4 months. I have a rectal stump so they'll be monitoring that for any bleeding. Any further surgery should it be required or requested wouldn't be for at least 6 months to let body recover from first. I have been feeling fatigue but they've reminded me that after nearly 4 years of being ill & steriods long term my body needs to recover. I started driving last week & I've probably been doing too much at times. My body also stiff achey in the joints etc. Could be doing more with grandkids? Hopefully nothing else. Re the bag I've got a very sensitive skin where plastics concerned. I was ok & then got a itchy rash around edge of seal. Common sense starts to kick in as you 'own' your own care. Took bag off & let the air get to area. Clean & dried thoroughly & put on new bag slightly off the rash ring area. Cleared up rash by time I asked to see nurses again. They checked cutting hole ok & changing bag ok. Said I was doing well. Cause of rash? Got hot & moisture around area also in my opinion sometimes I need to change after 2 days not 3. Sometimes bag comfortable & you forget sometimes it's not but trial & error I guess as early days. Been out a lot last week as driving. Great to sit in grandsons assembly & not be panicking might need the loo! Nobody realises you have a bag! There are times when I think , ok you can take the bag off now but then remember the alternative. It's a Big individual decision. It's only Now 9 weeks later I've started to reflect on how I've 'lost' nearly 4 years of living because of Ibd & all the drugs I took in that time! I just take calcium now which I was already on. Hope you're keeping well. B x

Hi B, glad to see you are progressing and managing well. Hopefully you remember some of the conversations we had in the past when I shared my son's problems and surgeries. He was post ileostomy diagnosed as indeterminate too. The fab team at John Radcliffe Hosp Oxford diagnosed him as defo UC straight away after a referral there. They are very experienced. He had his stoma for 12 months before his reversal and removal of stump. He is still doing excellently, no meds, no pain, no accidents. He has no regrets as he is as active as before. I wish you luck. Sheila.

Home glad all is going well and you seem to be coping with it all, glad that you mentioned about the rash as I have sensitive skin and was worried as on the sample the hospital gave the adhesive seems very sticky. Had first pre op cancelled as heart rate of 147 sent for ecg 142 consultant said poss due to steriods next pre op 19th April so will have to be well relaxed op due 22nd May! Just want to get the op over and done with and get on the road to recovery now that I have made the decision to go ahead and toget of steriods what with weight gain and water retention.

Hope all keeps going well for you x

Hi Helena if you've decided on stoma bag & have sensitive skin you might want to do what I did. I got as many samples as possible from stoma nurses & trialled them Well before op! . At one point I had bag stuck each side of tummy button! Also I went to friends for coffee & after couple of hours asked if notice anything different about me? She said er, haircut? Lol. So I showed her stoma bag stuck to stomach- she had no idea! Back to sensitivity, the minute I got itching etc took trial bag off. Numbered bag with pen & wrote comments on it so didn't get confused which bags ok or not. Also you can contact companies for free samples telling them sensitive. One bag I tried had honey impregnated onto sticky pad. Honey is reported to have healing properties. Lavender wipes are great as well, soothing, before putting on new bag. When you've had your op & got the bag It Will be testing to begin with. Your emotions may be up & down But you've got to remember it's to make you well. Any more questions please feel free to ask. Keep us posted. B x