Feeling Lost and Hopeless with Pre-Diabetes and Ileostomy

Please excuse the rambling nature of this message, but I felt I needed to get this off my chest.

So, having been told I have pre-diabetes on Tuesday, I have been doing a lot of soul-searching since then. Since my ileostomy surgery in 2016, I have been complaining for years of tiredness, fatigue, and generally feeling 'like a zombie.' My consultant has referred me to a clinical psychologist to see if my mental health is impacting upon my general health, and maybe it will help, but I do feel generally 'fobbed off' by him. I don't think he is not addressing the key issue here. Until I see a specialist dietician, I am so confused with how I am going to marry up my diet to suit 'both sides', as I suffer from high output anyway and any fibrous food will make this worse.

As you might have read from my previous posts, I do think the loperamide to control output gives me a lot of side effects which is hindering my ability to live a full and active life. When asked if there are any alternatives, the consultant says there are none. None - how is this possible? Loperamide is a simple OTC medication that you and I can buy without a prescription, which to me suggests there is something a lot stronger (unfortunately, codeine doesn't count for me as it knocks me out completely). He has failed to give me a reason why food travels through me in literally 5-10 minutes, despite me eating little and often and being careful about what I eat.

I simply see no future for me currently. I have been suffering from this problem for 12 years (diagnosed with UC) and it has been a long 12 years where I always held on to a glimmer of hope that things would get better. I never ever wanted to have stoma surgery (I had a J-pouch before this which sadly failed), but I have ended up down this horrible path. I have always been positive and outgoing, but this has now gone. I was always active, but due to tiredness and fatigue, I have had to stop doing the things I love. Working is becoming harder because of this. I have even had to stop singing due to persistent dry mouth, which the consultant doesn't seem bothered about. I have lost friends and relationships because of this. I am truly lonely and only have my parents for support. But I even feel that they are getting tired and fed up of seeing me like this, especially as my brother is living a full and productive life. He has two kids and is married and owns his own house. I have none of these things.

If I cannot live the life that I truly want, then I don't see the point of carrying on. I have gotten to 34, but I have felt like I have put my life on hold for twelve years. Life seems to be passing me by. I think of all the things I should have done by now, and this truly upsets me. I think to myself, where would I be if I hadn't had any of these problems? Despite all the positive posts on here, life with a stoma is shit, truly shit. And it is much worse than I ever thought it would be, or was told it would be. This is no life at all. It has knocked my confidence hugely and made me extremely body-conscious. I feel ugly and look completely washed out. Life with ulcerative colitis was actually better, despite the pain. At least I had something that resembled a normal life. The surgery has made things worse, not better. I always think of that moment the morning of my surgery. If I knew what I know now, then I would turn around and cancel my surgery, no hesitation at all. Maybe I would have been forced down this road with my UC symptoms at some point in the future, but knowing the surgery was my choice makes this all the more harder to accept.

Anyway, again sorry for the rambling nature of this post. I usually take my time with what I write, but I had to get this out there to people who understand what it is like.

Sorry to hear how bad you have it. I'd start seeing some other professionals that may know more than your current professional.

I am a "newbie" with my stoma, and imagining 12 years with it is very hard for me. I too hate what my life has become since my surgery. I was not in a relationship when I had my surgery and I have no idea how I will ever be in one at this point. I am sure many others here have multiple health issues like I do, and it sounds as if you do. I am older than you, but the thought of being alone the rest of my life also makes me want to give up often. So there are others out here that feel the same way you do, whether we should or not. I am going to a specialist Friday to find out if there is even a possibility of ever being able to reverse my ostomy. The first time they tried to reverse it they discovered cancer and had to take care of that instead, and that made it where reversal may be impossible. I know it is not all roses for those who are already in a relationship when they have this surgery, but I feel it has to be a little easier because they have that support and do not have to figure out how to start a relationship with someone. I know there are a lot looking for relationships on here, but finding someone within a reasonable distance that is compatible who understands how you are feeling is a lot harder than people think in my opinion. I guess I am saying you are not alone in how you feel. Right or wrong. I don't really have anyone I can complain about my stoma to very much, because my parents are old and I do not want to put it on them, my kids say they are not my "dumping ground", I have no spouse, and if you talk to your friends or siblings about it too much, they get where they don't want to hear it. So yeah, I'm there with you. If you find out why you are tired all the time and have fatigue, please let me know because I do not have much energy anymore either. All I want to do is sleep, and anything strenuous at all is out of the question because of the fatigue. I'm sorry you are going through this. It is really, really hard. I hope you find the strength to.

There has to be other medications that can be tried in your case. Is it possible to get a second opinion/change doctors?

The distance thing is huge for trying to find a relationship IMO. However, I believe there has got to be way more people closer to anyone of us that are sporting these awesome accessories than we know. The issue is finding out how to get involved/contact with other ostomates, if that's your desire. I know for me that the only ostomy group that I know of around here only meets once a month and it's when I'm working of course. I'll be taking part in a group research study for the type of cancer I had and that may open the door to finding others that carry excess baggage daily.

Hello Mike 1988.

Thank you for sharing your feelings and experiences and I hope that by doing so you have, indeed, been able to ‘get it off your chest’.

There are several facets you describe in your post which appear to be impacting on your somewhat negative perspectives and your demeanour and I would like to comment (without prejudice) on some of them.

1)       The feeling  of ‘fobbed-off’ by your consultant.

These people are often ‘specialists’ in a very narrow field of medicine. Unfortunately, some of them have very little knowledge or expertise outside their specialism and therefore flounder when confronted with multiple problems, of which they are ‘ignorant’.  Occasionally, they are honest about their lack of knowledge or skill and refer their patient’s to another ‘specialist’.

In your case, it seems as if he/she has decided that part of your problem might be psychological, so he has referred you to a clinical psychologist.

This is a specialism of my own so I do not wish to denigrate the potential benefits of getting this sort of support, especially as all aspects of everyone’s life eventually are influenced by the way we ‘think’ about things.

You may well benefit from such intervention. However, when a ‘specialist’ says or implies that there is nothing more they can do for you, it means just that: ‘they’ cannot do anymore for you. It does not mean that nothing or nobody else can do something.

2)      You mention years of fatigue and tiredness.

I have personal experience of trying to explain this to doctors who were obviously either not interested or way out of their depth in this regard.

There are many possible physical and psychological reasons for feeling tired but I truly believe that the physical aspects should be explored and dealt with before implying that the cause might be psychological.

In my case, (after exerting much pressure on my GP)I eventually found two main reasons for my own fatigue and tiredness; The first was sleep apnoea, and after I was prescribed a CPAP machine (CPAP= Continuous Positive Air Pressure) my general  tiredness miraculously cleared up- literally overnight. The second reason, which was for my occasional bouts of absolute exhaustion and fatigue was the fact that I ‘suffered’ from intermittent episodes of very low blood pressure. This caused me to have all my energy drain from my body and I would eventually collapse in a feint. Once I knew that this was the physical cause it was relatively easy to manage and control.

Of course, there are many other potential causes for tiredness and exhaustion including physical  things like diabetes, or  psychological ones like stress, but you can see why I would advocate sorting out the physical sides either first – or alongside the mental strains.  

If you have been referred to a psychologist on the NHS it may take months or years to get an appointment, so you will have plenty of time to press for physical explorations before that comes about.

3)       Food travelling through your system rapidly:

This has been discussed a lot on this site and usually relates to ileostomies. There are some useful past posts referring to this in the ‘collections’ section.

4)      Loperamide( & other medications):

I had problems with Loperamide, but they were not the same as yours. I resolved my problems by obtaining the liquid form and giving myself a much more precise dose measured via a syringe but taken orally.

5)      Activities:

It is quite important for us to continue with (or create) activities that we enjoy, otherwise the void can exacerbate our discontent.

6)      Loneliness:

Unfortunately, many people with a stoma find themselves having to deal with the problems in isolation from their family and friends. ‘Shitty’ problems are not things that make for positive socialisation. Different people deal with this in different ways so there is no ‘right’ way of tackling this issue.   

7)      Looking back and making comparisons:

Looking back on what ‘might have been’- ‘if only’, is a trap, whereby people feel unable to move on towards a potentially better future. The past cannot be changed; The future is often what you make it and the present is where planning a route can make a lot of difference to that future.

8)      “If I cannot live the life that I truly want, then I don't see the point of carrying on”

This is a statement which reflects so many people’s inner feelings whether their lives are good/positive or not. 

‘What is the point?’ is a very good question, which many philosophers have struggled with over centuries. There is, of course, no simple answer: Some people find religion, others find ‘love’ of different shades, and others use their time and effort in activities to distract them from thinking too deeply about the meaning of life.

9)    Loss of ‘hope’.

‘Hope’ is a concept that is extremely important for motivating us to move towards a better future. Unfortunately, this has been recognised and exploited by almost all those human beings who wish to ‘profit’ from the misery of others. Without going into this in depth, one of my ex-clients described the process as “The theft of hope”, which seems to sum it up quite well for me. 

The fact that humans seem to have made a mess of things, doesn’t mean that other animals have done the same. It seems to me that some humans have discovered that making ‘friends’ with other species has benefits way beyond the toxic relationships they tend to come across in their fellow humans. 

10) Wants/needs- happiness/contentment:

You mention that you could not carry on if you cannot have the life that you ‘want’. 

I struggled with this issue for several years until I realised that there is a fundamental difference between what we ‘want’ and what we ‘need’. 

I listed three basic ‘needs as: food, warmth and love. All else can be categorised as ‘wants’. 

Profiteers in modern societies have vested interests in encouraging people to be ‘discontented’, so that they can ‘sell’ them the idea that ‘happiness’ can be purchased through whatever it is they are ‘selling’. Usually the concept is based on a ‘confidence trick’ and will eventually end up with the individuals being even more discontented than they were before (Thus, potentially buying into the false premise even further).   

I do not have the answers to all these sorts of questions but I do think that asking them and trying to answer them is a worthwhile activity in itself. However, I do not think that other people’s answers are necessarily ‘right’. We need to think these things through for ourselves and come up with our own unique perspectives. 

I tend to write rhymes to encapsulate some of my thoughts on some the issues you have raised and a few of them can be found in ‘collections’ under ‘poetry by Bill’.

As an epilogue to my own ramblings, I would reiterate that what you have been feeling is not at all unusual. These are the sorts of things that are likely to spin around in people’s minds when they have suffered a trauma of some kind. 

The condition has often been described as PTSD (Post Traumatic Stress Disorder), which is a ‘treatable’ condition.

I hope you don’t mind my extended reply to your post but these are still things that i too need to work through on a regular basis in order to stay ‘sane’ (whatever that is)!

Best wishes

Bill             

I haven't read all the responses. There is a name for this, you seem to have "Diversion Colitis".

I have a J-Pouch which failed and I was on Vicodin for a long time. I've since then been diagnosed with Crohn's/UC. Vicodin works for a while but you would need it too much to live your life.

I eventually tried three things and they worked.

There is a Steroid Foam called "Colifoam". Inserted into the Anus, it relieves swelling and really helps. The Applicator is like a plastic syringe... I just used my finger... much safer!!

What seems to have helped it was a combination of Flagyl and Ciprofloxacin/Cipro. There is an infection, probably if your Rectum and/or J-Pouch are still there and Colitis still lives in the Rectum!! There is a problem with "Fatty Acids" after you have this surgery.

My GF used to use Liquid Opium for Short Bowel (do you have Short Bowel?). Just one drop from an eyedropper on her tongue about 4 times a day allowed her to live and eat very normally even with Short Bowel!! Just a few drops! Her frequency was just like mine... very tolerable.

For years, I had Horrible Cramping and Gripping Pains in the lower belly. My Butt was raw and bloody most days and I just wanted to die!! The Flagyl really, really helped a lot and it seems the Cipro combined to kill whatever was causing the constant infections.

If your Doc will give you Cipro, give it a try and use the name "Diversion Colitis". This has been recognized since 1974!!! So it is No Mystery to Docs in the Ostomy Business... it is a Recognized Condition. If he/she doesn't know that, then you need a new Doc!!!

All the best, Magoo

Hey Mike, if all I had to worry about is one stoma and feeling like a zombie, then I would not have much to complain about. You can get through this. If your ileostomy is working okay, then your tiredness and fatigue could be due to simply being dehydrated. There are things you can take to fix this. Find yourself some new doctors; it sounds like the ones you have don't know very much. I have two stomas to manage, as well as just trying to live my best life. Just remember, no matter how bad you think your situation is, there's always someone worse off than you. I wish I only had one stoma instead of two. I lost my relationship and had to refinance my house, but that was a few years ago. I felt just like you. At least I'm not stuck in a wheelchair or, even worse, blind with two stomas in a wheelchair. I'm just a little broken, but not enough to let it get me down anymore. I've had an extra bonus life of 14 years so far and hope for more yet. I had an older friend who ended up in a wheelchair from a motorcycle accident. He even said, "There's always someone worse off than you." When I asked him who or what could be worse than being in a wheelchair forever, he answered, "Seeing a young child in a wheelchair forever." So chin up, my friend. It's not the end of the world.

One more thing. My surgeon sent me to a urologist... said maybe my prostate... bullshit, he knew about diversion colitis. Sending a patient to a psychologist is IMHO... insulting!! This is a very real thing and they should know that, if not they need to go back to school!!

Magoo

Many shared feelings here, so I totally understand your situation. Depression can so easily take over my thoughts, so I fight it as best I can - I hope you will be able to as well. Hugs to you.

Definitely my ultimate hero!

Hi there,

I can understand where you're coming from. I spent over 17 years looking for a doctor that could tell me what was wrong with me. I spent my whole life literally constipated for 3 weeks at a time, lived on laxatives that obviously didn't work very well. Every single doctor couldn't or didn't want to find out. I had doctors pretty much laugh in my face, tell me to go pray to trees, told me I had nothing wrong with me, and one told me to suck it up because people have it worse than me and to get over it. They had looked at my age when I was 19 and said I was too young to have such problems. I am 36 now and last year they found out (finally) my colon didn't move at all, it was dead, and it was removed. I didn't wake up with a bag at this time. I was going for maybe the first month after my colon removal, then started having issues again. I went through Botox injections that didn't work and made things worse, until finally a year later and now I have an Ileostomy. And now I have to have it revised because my stoma is flush and nothing works. I always have gastroparesis, hiatal hernia, and GERD. I am limited on my food as well. But there is always hope. And peace and healing. I find mine with God, along with Him being my strength. Don't be so hard on yourself that your life isn't where someone else's is. I have done it myself. Your story is different and you have a beautiful story of your life to tell and how you made it and the strength to go through it.

Hi Mike!

Well, I've read some really dire posts on here.......but yours is up there, close to the top! I can relate to most of what you're saying, Crohn's entered my life on a Tuesday, back in May of 1989. I'll remember that day forever. And life went from fantastic to "what the hell just happened". All the thoughts you've had.....I've had. In my case I didn't know I was going to end up with an ostomy........but had I known I probably would have suffered through the pain and side effects of the prednisone I was living on to avoid all this ostomy crap. But hindsight is 20/20 and we tend to forget the bad stuff and remember the good....so I'm sure when I was on the floor curled up in a ball screaming my head off in pain with my brain wishing I had a gun nearby.......I was thinking even an ostomy would be better. So you can't win. But look, there's no going back, so no point dwelling on the past. The point now is to make the best of what you've got.....which in your case........is a lot more life to live.

First thing.......stop comparing yourself to others. You're you and not them. Life isn't fair and even the slow folks figure that out at some point and are thankful for what they've got and glad it's not worse. If the people you know haven't figured that out by now tell them to go fuck themselves and leave you alone. I know......you're thinking you're pretty 'worse' at this point, but you can change that. First thing to fix is your attitude. Find a local 'children's hospital', near you and go visit. No kidding......pop in there one afternoon and see how bad it can get. You'll come away with a new outlook.......I guarantee it. If not, there's something else seriously wrong with you. So let's get to you.....

Loperamide isn't the only motility drug out there. There's more of them, but only you and your Doc can figure out what will work for you. Just the fact that you're still having all this trouble, and seemingly getting no help from the medical community tells me you need to find better doctors. I can't overstate this enough.........YOU ARE THE ONLY ADVOCATE FOR YOUR HEALTH IN THIS GAME. Your Docs go home at 5:00pm and don't think about you until the next visit. You can't rely on anyone else to make you better than YOU. That means you need to educate yourself on your condition and treatments. Relying on a doctor or two is a pure crap shoot......and not how you want to be handling your health. Try new doctors until you find one or two that you're in sync with and who understand your problem. And if that stops, for any reason, move on! All docs are not created equal and there's a ton of them out there that should really be cleaning toilets rather than doctoring. I don't know how the healthcare system works over there in the UK.....but clearly the Docs you have on your 'team' need to be replaced with more value-added teammates. Hopefully some on here from the UK can chime in and help you with that. But get the help you need and do it quickly!

You didn't say how much Loperamide you're taking, but have you experimented with the dosing and frequency to see if anything makes a difference? Someone asked if you're short-gutted.......are you? If so you're playing a whole different ballgame. You say you think you're experiencing side effects from the Loperamide, but it's a fairly side-effect free drug, as far as I've found out. If while taking it things pass that fast through you.......then just stop taking it and see if what you think are side effects go away or not. If not they're not from the Loperamide. I tried the opioids and they had no effect on me in terms of slowing anything down, so I avoided them. Diphen-Atropine (commonly called Lomotil) is what I use in conjunction with Loperimide and I notice a difference when I change either my frequency or dosage. I've been slowly tapering down both over the years, but still have a way to go. If you Google 'drugs that reduce motility' you'll see there are others too. The type of food and when you drink also play a big role.....so things to consider. You want to have a good dietician on your team as well, and a good Gastro will know a good dietician. Which is not to be confused with a Nutritionist. You want a dietician who deals or is knowledgeable in digestive disorders. Like I said earlier, if you're short-gutted it's a different playbook. If you're not and experiencing such fast throughput then your intestines must be inflamed or severely irritated.....which means you have disease activity going on. You need good docs to help you figure that out....and it should be very easy to diagnose. Have you been scoped recently? Is anyone doing ANYTHING for you to help you out??

For me the first step would be to evaluate the condition of your existing bowels. So finding a good Gastroenterologist is task number 1. Not any Gastro.........a GOOD one! There's not much more to say at this point........YOU need to find the right people to help you. And ASAP! When you do you'll look back on this time in your life and think of it as being as bad as it got. Because from here forward you're going to make it better. Now go find the right people to help you do that.....that's what they're there for!! And keep us abreast of what's going on with all this.

Bob

I agree with you, your consultant is crap. As you're in the UK, I would phone your GP and tell them you want to change your consultant. It would be easier if you have one in mind, but if not, the GP can go through the list of them.

There are many other meds as well as loperamide that you can take. You can take a combination of a few at differently timed intervals so that as one is wearing off, the other kicks into action. What dosage of loperamide are you taking daily and are you taking tablet form or instant?

It's good that your consultant is finally sending you to see a dietician. They should have done it long ago! You must be dangerously underweight after all this time with a high output stoma. There are NHS clinics in the UK that just deal with high output stomas, which would be much more beneficial for you to get your output under more control. When you see the dietician, I would ask if they could refer you to one. Pre-diabetes is a good thing. You're looking at it the wrong way. What it really means is that with the right diet, you can turn it around so you don't end up diabetic.

Seeing the psychologist will be really good for you too, just to talk and get everything out. Don't take this the wrong way. Lots of us go through the same, and I have myself, so I'm not being hurtful about you in any way. From my own experience, I believe the falling out with friends and relationships breaking down are from what's going on inside your head, and you're unintentionally pushing them all away without realizing it. With professional help, you can get on top of it and get back to your old, happy self again.

Hey man, I hear ya. You can have the life you want if you just start living it. I'm not a doctor, so I wouldn't know how to beat the fatigue. But as Bill previously mentioned, there are a ton of possible causes, and you know yourself better than anyone else. You will get on top of it when you figure out why it's happening. Next time you're at a hospital appointment, try to start chatting with others in the waiting room. It's probably half full with folks who feel exactly the same way as you do. Be open and honest about your stoma. It's nothing to be ashamed about. At least you don't have to wipe your own arse twice a day. Folks who don't get it clearly have a pea for a brain. It's not their fault and they can't help it, but seriously... eat when you're hungry, empty when you're full, drink plenty (I mean plenty), and sing to your heart's content. Because if you don't, you'll look back one day and wonder why you didn't just crack on. I have every sympathy with you, Mike, but you have to keep going. Fight the feelings when they come on. It's fine to feel them, but don't hold onto them day in, day out. You know there's a whole lot more to you than a bag stuck to your tummy. I obviously don't know you, but I'm sure your parents think the world of you. Your brother has been very lucky in life. One hell of a hand he's been dealt, but I bet he has his own demons when he lays his head down at night. Be happy for him and his. Aim for the same if that's what you want from life. It's there waiting for you, but you have to go and get it. Things will change, man. They always do. Stick with it... take care and all the best. Sean

Mike, please read.... It's not the life any of us on here wanted, but we got it and we live it.... We may not like it, we may be angry about it, maybe even sick of it.... But we fought through other crap coming up in life. Why is this any different? It's just another stepping stone for us in life. We figure it out and move onto the next issue.... Nowhere was a mate ever told you can't have a normal life.... LIFE is what YOU make it, not your stoma or your bag... You are not alone in any of these issues, just reach out. You got this ostomate family right here for you... Stay strong... Carry on

Your homie with a stomie

Tracy ;

Wtg bud, that's a great idea or approach. The hospitals, see if you can visit with mates, etc. Some nany ways.....

Bit rude, it's entirely up to each person what they choose to do.

Hi Mike... I'm just 7 weeks post-op today! I have an ileostomy and a fistula, both are temporary. And I'm still getting used to the new me, I imagine I will be for some time yet! However, have you thought about getting a second opinion? Surgeons are generally only interested in cutting. Some may not have the bedside manner they should have nurtured and just pass the book or point to other factors without addressing the issue... simply 'cause they can't because they just don't know, and are perhaps too proud and/or arrogant to admit that!

If you're in the UK, I'm just next door in the Emerald Isle, then you have to have access to the same meds as me. I am taking Imodium and codeine phosphate. I also take magnesium and St. Mark's Solution is my hydration source to help thicken output, and it does work. It's just glucose (not sugar), bread soda, and salt in specific measures, the recipe is readily available online. It's an acquired taste, but after a day 'tis grand, and if you store it in the fridge, better again! You should get your full bloods done and also ask for your ACTIVE B12 count to be included. The word "Active" is important here, not just your B12 count. If you are low in any, then you should remedy the same and get bloods done every 10 days, to check for deficiencies 'til you're sorted. I had your symptoms in the hospital and they found magnesium was low and dehydration was a major problem too. I know B12 deficiency can wreak havoc on your mental health. So please go and get bloods done. The U.K. has a fantastic healthcare system, so please seek a second opinion. And PLEASE get your blood checked. It could be a simple thing that could fix you up and make you all better. Mabsie Moll ‍

Yes, that doctor at that time was out of their mind. The doctor didn't believe I had anything wrong with me. They got an earful on that one. And I told her I don't pray to trees, I pray to God.

Caz.. Kathy is right.. I wasn't saying I pray to trees. It was what one of the many doctors I had seen in the past 17 years to figure out what had been going on had said. That doctor didn't want to do anything or believe I had anything wrong with me. I pray to God.

Yes, that doctor definitely was out in left field... That wasn't my doctor though. I went through ten different doctors/specialists before I found the one that found out what was wrong. If a doctor isn't going to listen or have knowledge of what they are doing or good bedside manner, etc., I leave and I find a different doctor that will do what they are supposed to do and do it the right way.

Wow! What a thoughtful and positive response, Bill. I struggle against the Dark every day. Today I'm winning.

Thank you!

Good luck, Mike1988!

I agree, you should try a different doctor. I had UC for 15 years before my surgery, and there are vast differences in how much doctors listen and care. Also, maybe try a dating app. There are some people who will write you off because of your conditions, but many who won't.