[Gill20Participant]

Has anyone else suffered with a very sore lower intestine/bowel. If so have you any ideas how to get some relief. I have seen three doctors at the clinic but they don't seem overly bothered and just give me co-codomol which doesn't help and have increased my Lansoprazole to twice a day.

I had a bad bout of mucossitis and could not eat for over a month and I am still not recovered I still have problems swallowing and have a sore throat all the time. I have had some good news though I was told yesterday that I have an almost complete remission which they were surprised at as I had mgus for 17 years before I needed treatment for myeloma.

Thanks

[EvaParticipant]

Hi- this is Eva. I had very serious diarrhea after my transplant – to such an extent that I came home wearing a nappy. I was on Loperamide Hydrochloride 2mg capsules several times a day. I think that in time my system recovered enough to be able to fight the side effects. I found eating difficult and of course, had to follow a neutropenic diet. To be honest, I don't recall much contact with the hospital and I was too ill to make it to the local doctor's! I was told I could phone the ward I stayed in if I needed additional meds or had a high temperature. Perhaps you need to be on a certain antibiotic? The ward doctors that looked after you might have some ideas on that one…..Slowly, slowly I began to eat and to walk a little. What was most strange was that for a while I couldn't take in anything I read, so it was a big milestone when I read several pages and knew what they were about.
Best of luck,
Eva

[tomParticipant]

Hi Gillian

As for me after SCT I had the same as Eva and to be fair I dont like to go too far from the loo after eating 🙁 no pain though am pleased to say.

Good luck

Love Tom "Onwards and Upwards" xxx

[HelenParticipant]

Hi Gill
I'm 8 months post transplant and had mucositis and a septic colitis following my sct. This is resolving slowly and i have had lots of scans and stuff just to make sure there was no permanent dammage, but I still get a lot of collicky pain. Our hospital does not do the neutropaenic diet approach at all, just experiment with whatever takes your fancy. I can't have curry, alcohol, apples, bananas, lamb and a few other things as they seem still to aggravate my tum and i have stopped all the medication, the lansoprazole made me feel more sick and bloated. Now i just take painkillers if it is very bad. There is no treatment, it's all about readjustment and getting back to normal. Some folks seem to do it quickly , others much much slower, you know, the full range of normal etc, I guess some of us like you me and eva react more than some of the others. Hope it settles soon.
Love Helen

[Gill20Participant]

Hi Eva, Dai and Helen,

Thank you all for you replies, Eva I too had bad diarrhoea and sickness and was in hospital for a month. I came out on the Thursday and was back in for another week on the Friday. I am still being sick and on antisickness tablets although it is now only 3-4 times a week so I am getting there. Like your hospital Helen my hospital doesn't do the neutropaenic diet either. I can only eat some food and this is changing all the time what I can eat today I may not be able to eat tomorrow.

I have decided to try a dairy free diet to see if I am lactose intolerant this is going to be difficult because most of what I have been eating includes dairy.

I am like you Eva, I am only just being able to concentrate on reading and even watching television. I am trying to push myself to walk everyday and do the cooking and chores around the house and I am improving every day but I get very shaky.

Hopefully we will all get well very soon. I cannot wait to have a holiday I had to cancel a cruise last year but my husband has promised me the best holiday as soon as I am well enough.

Thank you so much it is reassuring to know that you are so supportive.

love Gill

[susan123Participant]

Hi Gillian,

I am 3 years post sct and still in remission, I have also had problems with my stomach eg. I can't have chocolate, cream or ice cream or the next morning I know about it, I have the runs and stomach pains.

I have recently had an colonoscopy (not nice !) ultrasound, ct scan, barium meal and an endoscopy. 3 months ago my consultant said he would let me if they find anything and I hadn't heard anything until this morning when I have had my appointment come through for 5th June to discuss the findings. I am pretty confident all is ok as it will be 3 months by then and I would have heard before now.When I had my endoscopy I was told my duodenum was inflamed and they also took a biopsy. I was also told to take Lansoprozole 30mg once a day , which seemed to aggravate the condition.

I will let you know the results.

Love Sue xx

[Gill20Participant]

Hi Sue,

I am sorry you are still suffering after three years this seems an awfully long time. I haven't found out what irritates me yet, I have been keeping a food diary but it is difficult as my stomach is so sore all the time. I wanted to cut out solid food for a few days and see if I was any better but the consultant said I need to put on weight as I lost 3kg in 2 weeks and I had been eating.

I do hope that your results are good news, but in some ways you want them to find something so at least you know that they can make things better.

Good luck on June 5th I will be thinking of you.

Gill x

[Gill20Participant]

Hi Susan,

How did you go on at the clinic with the results of your tests? I came in to clinic for a scan over two weeks ago and because my temperature was high they kept me. I have swelling in the colon so I had a Sigmoidoscopy which didn't show much. After I had been in for a week they re-looked at the CTC scan and noticed that I have nodules in my lung so they have been working on the theory I have a lung fungal infection but nothing is working on it. I am waiting now to have a biopsy to see if they can identify it. only another 4 days and I will have been in as long as my stc.I am on a low fibre diet and this seems to help the soreness so I will continue with it at home.

Love Gill 20

[susan123Participant]

Hi Gill

The gastrologist said there is 'no cancer'-thank God! However, I have diverticulitus and I have to have another colonoscopy (lovely) to check the large bowl/intestine incase there is an infection present,and also to see what the treatment will be.

I hope you are at home now Gill and feeling much better. I have my colonoscopy on 16th July so I will update you later on these results.

Take Care

Love Sue x

[Gill20Participant]

I am home after almost three weeks in hospital, I am still no better and they cannot find the cause of the fungus which is a concern. I am still on antibiotics which aren't working and am having another CT scan on 10th July. The hope is that the nodules have shrunk which shows that the antibiotics are working or that they have grown enough so I can have a biopsy.

I have been having problems with my eyes since the transplant and the consultantant told me to get my eyes tested. I only had them tested in November but had them checked again. I knew things were bad but I wasn't prepared to know that my eyes have deteriorated 50% since the transplant. I even got a special discount off my lenses as they are so strong. I have to wait till 4th July for my new specs but hopefully I will stop getting headaches and feeling dizzy.

Hope everything goes well for you Sue, my stomach problems seem a lot better on this low fibre diet and with the tablets I am on so I have said I don't need any further investigations.

Gill x

[tomParticipant]

Hi Gill

Welcome Home I bet you were fed up

You are correct its better for you when they find something ? anything to put a name to it:-/

I see your eyes have got bad? some times I feel mine aint as good as they were? Youing Bride (elaine) tells me to go and get new glasses but I aint due for an eye test till next year:-0

Keep strong and stay fit.

Tom "Onwards and Upwards" xx

[susan123Participant]

Hi Gill,

So glad to hear you are home and things with the stomach seem to be improving, my stomach is not too good at the moment as I keep getting really bloated. I will have to wait for the outcome of the colonoscopy I suppose. I also have poor eyesight since transplant and find I now have to have an eye test every 12 months instead of 2 years as my husband does, however, I was starting to get a great collection of glasses and it's costing me a fortune, I have recently donated them all. Goos luck with everything Gill.

Love Sue xx

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