Lonely place

Hi - have been reading some of your posts for a few weeks and they have been a great in helping me to understand this illness.
I am a widowed lady in her 70s and was diagnosed in 2013 (after a couple of months of quite severe bleeding) with UC Proctitis which was successfully treated with Pentasa Granules and Asacol suppositories. I remained on the Asacol as maintainance and have been pretty lucky up till now - however 2 months ago I started bleeding and I stupidly thought it would clear up on its own but it led to a flare up - no real diarrhoea - just twice a day very soft stools with blood and mucus plus lots of tenesmus in between (blood and mucus). I am now on Pentasa 4g and Asacol suppositories 1g and the tenesmus has completely stopped . I am passing just one softly formed stool a day first thing in the morning but there is still blood... The water turns red. My last bloods were two weeks ago and were all ok (even my inflammation markers). The past few days I have had a fair bit of griping - something new to me as I have not experienced a lot of pain and have spent sleepless nights worrying. I have found these past few weeks very difficult even though I realise that my disease is so mild compared with many of you.. My family are all living away so this is a particularly lonely place to be at the moment. I just want to feel well again.

Im sorry you're struggling. Have you called your doctor? This can be a lonely disease, and I know what it is like to not have a support system closeby and be ill.

I agree with quincy. See about getting enemas, either mesalamine or uceris, or both. I always loved having extra supplies, you never know when inflammation can return.

I am so sorry you're feeling down. It is hard being alone and having health considerations. I am happy it sounds like things are calm with your proctitis, but you definitely need to do some things you enjoy, get out and see friends, have fun... Volunteering can be a good way of getting out and being busy, while doing something good for the world. I am lonely a lot myself, but i have pets. They keep me quite busy and they are very loving.

jenni, I don't have a lot of suggestions health wise but I just want to offer some moral support. I too live a solitary life. I've had UC for about 5 years now. In the beginning I had a whole community rallied around me and willing to do anything, but in 5 short years most people have moved on. Not their fault, it's just how it goes. Some got married, some got jobs and relocated. I've felt pretty stuck in the mud not able to move on with my life. This disease robs us of so much.

One thing that helped me is that I joined an IBD group in my city. It's not big maybe only 10 people show up every month but I've made some friends who I can get moral support and inspirations from. One of them even offered to bring me groceries sometimes which was really sweet of her. I use a grocery delivery service on my worst days so I don't have to go out.

But the loneliness is a hard one. I play music in my home all the time, watch movies and online videos. I know they're not real people but the sound at least breaks the silence. I also go for walks and sit in the park when I'm not having a lot of BMs in one day, just to see people and be out in the world.

You also have this forum even though it's all written in text you at least know that real human beings wrote the words and that counts for something. Anyway my best wishes to you and I hope you get your disease under control. Me personally I am close to relocating to where I have more family, just to have support and social interaction. I know not everyone has an awesome family but most of us have one that is at least half decent and that can really help when it matters the most. Just an idea.

When my UC was very active, in order to get my mind off bad symptoms, I would go to a local gym for low level activity or even walk around a large department store, knowing where the bathrooms were at all times of course. Being around other people, even in an impersonal way, was beneficial, along with the physical act of leaving the house.

There are also social groups available that meet once a month you could join. Don't reject groups immediately, you are really just getting out and about, no commitment for future attendance. Here are just a few at my local library: genealogical, historical (local and national), film watching, knitting, rock-painting, computer skills, photography, helping others to learn to read (children and adults) and of course book clubs. They all bring human contact, some at arms length and others one-to-one. What I like about libraries is clean restrooms

I'm not a group person (waaay before UC) but joined a local AAUW (American Association of University Women) after attending a meeting and feeling a connection. Along with supporting education for girls and women they have an active social network with local group outings, lunches, etc. It is a tremendous asset for widowed and older women even though about half are still married, average age mid-70's (I'm younger). A college degree of at least 2 years is required which includes nurses. There are many other groups for you to test-drive and see if they suit you.

Get out and around other people. It will benefit your mental and physical health.