Living with Chronic Illness - Seeking Support and Advice

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Edurne
Dec 22, 2022 8:30 pm

When I was 21, I started to have some symptoms of what a specialist would later call a chronic illness, colitis. After 2 years handling it the best I could, I was having symptoms again, but it took me some time to realize the suppositories were out of date. So, one day at work, I couldn't get to the toilet on time because I had to go running. That was going to be my first time in a hospital due to the severity of the illness inflammation. The following year, 2004, I decided to go to Oxford to improve my English. However, it wasn't 2 weeks until new symptoms were happening, and I ended up in the hospital, where they said it was better to do surgery and remove most of my colon.
In 2005, they did a second part of the reservoir and finally, they took out the bag stoma. I gotta say that year was hard.
Even though everything has been better since then, my pelvic wall got tense, and I can't find anyone with patience enough to wait for the intimate relations, so I just assume I'll always be alone, never married nor have kids. Anyone else with this problem?

AlexT
Dec 22, 2022 9:49 pm

Welcome.

Past Member
Dec 22, 2022 10:25 pm

Welcome Edurne

I'm sorry but I don't really understand what the problem is. You said your pelvic wall got tense... What does that mean? Is that the reason someone has to wait for the intimate relations?

Justbreathe

MeetAnOstoMate website turned out to be a lifesaver for me. I say this because, for me, this ostomy journey was a devastating event both physically and mentally.
Here, I found folks who understood my feelings even better than my family or friends could. Only a fellow ostomate can understand how you really feel.

Information sharing is key, as well as support and understanding, to ultimately bring more harmony into our ostomy life journey. I found here, virtually no ostomy questions that are not touched upon. Questions which some might feel, may be too trivial to contact a doctor about or even too shy or embarrassed to ask their own doctor about. They are all addressed here.

For me, anonymity was very helpful in seeking answers to each phase of this life changing medical and mental event. Sharing initial trauma feelings, ongoing support and finally acceptance was what I found with my membership here. I am not sure what my mental and physical attitude would be today without having found this site.

Additional benefits included: finding products and ideas to help with daily maintenance, innovative ideas and as a bonus - some great humor.
After all “laughter IS the best medicine”.

I have been a member for 3 years, an ostomate for 4 years - yes, I certainly wish I would have found it immediately after surgery but so very thankful I finally found it when I did as I truly believe it turned my troubled depression and situation into a more positive attitude and acceptance.

Sincerely,
An Ileostomate nicknamed Justbreathe 🫶🏼

Edurne
Dec 22, 2022 10:43 pm

Yes, because it hurts me, and with the previous experiences that I've had with guys, they're not patient enough to be more careful. I guess they want to do it the easiest possible. And on the other hand, it makes me uncomfortable after all that, so definitely the best thing is to build a solid and serious relationship first, and later the sex part, but in most cases, what guys want is just sex. So, like I said, better alone.

HenryM
Dec 22, 2022 10:52 pm

A lot of guys are what you describe, but a lot are more understanding than that.  Don't give up on the male gender just yet.

 

My Ostomy Journey: Bruce | Hollister

Play
Bill
Dec 23, 2022 7:36 am

Hello Edurne.
Welcome to this site and thank you for sharing your story.
I tend to agree with HenryM. on this one. Intimate and Sexual relationships are often a reflection of personalities in that they highlight basic and inner trends and tendencies in individuals. 
It is unfortunate that many humans are basically self-centred, selfish and want things their own way, regardless of the consequences of this approach for others. In some of my past work I produced a descriptive hierarchical list of how this phenomenon plays out it the ‘real’ world of human existence.

The (OWL)  Own Way List highlights the sequence and intensity of behaviour of those whom I describe as having a Personality Disorder ( PD).  There are many such people (male and Female)who fall into this category, but not everybody.
Some people seek relationships that are not one-sided, but ‘mutually’ beneficial. Therefore they will be caring and considerate about their partner’s wants and needs. Incidentally, because this is a personality trait, they tend to also be caring, kind, and considerate in all their other relationships and general behaviour. 
It is my belief that these ‘kind’ people do exist, but are simply much harder to find than those of the opposite disposition. 
As Henry implores, try not to give up entirely, for the odd one may be found if you look in the right places and know what you are looking for.

It is not often I get the opportunity to reproduce the dedications to any of my books, but in this case it seems appropriate to do so . Hence, I leave you with the dedication to this year’s publication :
Best wishes

Bill

 

A DEDICATION TO KINDNESS.

Within my books, I tend to find
that dedications bring to mind
those people who have been inclined
to be compassionate and kind.

You know the people that I mean, 
where kindness often goes unseen,
because their kindness is the way
they simply live from day to day.

It is those little things they do 
for normal folks like me and you,
and it is clear right from the start
they do this with an open heart.

Their kindnesses are so sincere,
yet they don’t seek to profiteer 
or try to gain advantages
like fame, renown, or peerages.

They don’t need fame or recognition
to have a kindly disposition,
this seems to just come naturally 
so, it is no anomaly.

For kindness is an attitude,
that gives them lots of latitude
to make their mark upon this Earth
and show what they are really worth.

I think kind-people are the best,
and have no time for all the rest
whom I have rhymed about before
and shown how much that I abhor.

I dedicate this work to those 
whose kindness very often shows
that better side of human-kind,
which is so often, hard to find.

                          Be Withers 2020
     ( In: B. Withers- Be Kind 2022)

bowsprit
Dec 23, 2022 8:29 am

One of your best ones. Very appropriate.

bowsprit
Dec 23, 2022 8:39 am

Better alone is never better. Hopefully, you will soon meet someone nice and kind. Don't stop looking. What a lovely country Spain is. Well known for gallantry.
All the best wishes.

Ben38
Dec 23, 2022 3:20 pm

Look at it this way, if that's all they want from you, you're better off without them!

Men like that wouldn't want to know you once they got what they wanted from you; you would just be another notch on their bedpost.

Some people are lucky and meet the love of their life early on; others, it happens later in life.

There are more good guys than bad out there, and the same with women.

You will meet someone when the time's right.

No, my ileostomy has never been a problem in relationships. I guess I'm just a very lucky man.

TerryLT
Dec 23, 2022 8:31 pm

Hi Edurne, what you are describing is not that uncommon and is not generally related to having an ostomy at all, although in your case, it may be the cause or at least a contributing factor. You should see a gynecologist, as there are treatments for this condition. You don't need to live with this. I remember when I was much younger and was having chronic constipation, one theory was that I had tense pelvic muscles. I went to a physiotherapist that treated the condition, with no success. I know my doctor at the time also said that another treatment for this was Botox and that it was usually quite successful (though expensive). I never went for this, as I knew in my gut that my chronic constipation had nothing to do with my pelvic wall. My problems were the result of colonic inertia. You might have success with one of these therapies. Good luck!

Terry

Past Member
Dec 24, 2022 11:42 am

Hi Edurne, there is absolutely nothing wrong with being alone if that is what you want. But if you would like a partner, there are lots of great guys out there. You could look at it this way... because of your condition you are just weeding out the 'bad' ones. That is what I did and now have a gem of a guy.

gairdinspreagtha
Dec 27, 2022 7:30 pm

Welcome Edurne, there are so many beautiful, patient men out there. I know it seems hard sorting through all of them. Have healthy boundaries and I loved Bill's advice.

Mr.Heart2Win
Dec 28, 2022 7:58 pm

Do not let anything other than what makes you worthwhile as a human being define you. I have no issues dating; relationships are much richer and more meaningful now than they ever were before. I found a better self, also. And yes, you always start with a friendship, of sorts at least, and I would add to that, the important part is to share something that builds chemistry, such as a hobby.

I write, and attend groups and activities locally such as yoga, and Italian, and painting, memoir writing, etc. Most people that favor these hobbies, for example, are the sensitive types, the caring types, the types that can feel deeply and have intuition and creativity; types that are capable of self-reflection and tenderness, deep empathy. Intimacy doesn't always happen but looking for it is useless, it is when you are not seeking but deeply engaged in doing things that are exciting; things that engage you both is when that true love and collective meaning starts to happen, if at all.

If you are having fun, others will around you, it's contagious. It follows the laws of Entanglement, like quantum physics, a world full of probabilities. I found meditation on this path and practice regularly now. Try to find peace and serenity, and associate yourself with those who have found it. You'll find one, they're out there, it just takes time but starts with you not giving up. What makes us all happy are the simple things at the end, and Bill's advice is right on. Create your own path, it's a whole new journey now. Happy New Year!

Past Member
Dec 28, 2022 9:33 pm

"At the height of laughter, the universe is flung into a kaleidoscope of new possibilities." - Jean Houston