I am really struggling with fatigue and low energy.

Hello everyone, I am new on here. I have had my ileostomy and Barbie butt for over 13 years. I am lucky enough not to have skin issues, etc. However, I can't cope with the inconsistency of my vitamin D levels and iron. I can't tolerate the supplements and have to rely on infusions. They, however, take ages to arrange, then ages for the levels to come up. I have been on the same roundabout about 6 times now, and I can't bear it if I have to live like this for the rest of my life. I have had constant problems since the beginning of Sept. I can't even get out most days. I feel so low. I meditate constantly, which helps, but when it doesn't, I cry. A year ago, I was out with the dog twice a day and volunteering and thought I was on a win-win, but no, back on the merry-go-round. I am normally a bubbly, chatty, positive person, but I really think this has got a hold of me now.

Hi.. Welcome. Thank you for sharing your story. After 13 years with an ilio and no skin issues, I would say you are very lucky and should count your blessings.

This vitamin deficiency you are going through sounds rough indeed. What is causing you to supplement iron and vitamin D where you need infusions? I understand you can't tolerate tablets.

I have not heard of this being so extreme, happening with others, but you can't be alone in this.

Also, can you talk to a professional? A good friend maybe? About your situation?

We are here to hear you. Help you. And believe me, others will chime in.

Stay strong. Keep your chin up. You are just hitting a bump in the road. Okay, maybe a few bumps... a time out even.

Recharge, reboot, and get that smiling face out there breaking some hearts, kiddo.

I feel you! Been going through the same myself, but no help from doctors! I started on gummy vitamins, then switched to liquid drops. But, they aren't very high dosage. So, tried capsules! OMG! Partial blockage galore! So! Go with gel capsules… but, like me, you may need to take a little more than the recommended dose depending on your diet. I'm trying the gel capsules now but found 2-3x serving size (depending on dose, etc.) of liquid drop vitamins worked well at the time before last surgery. I hope I helped your situation even a little!

Gummies... yes. I forgot to mention those. They taste great. Probably safer than capsules. No water needed.

 

It is nice to not be alone in this, so thank you. I do sound like you, and you do sound like me 😁. I have tried gummies, drops, and capsules too. The drops are quite new, but I haven't noticed anything different yet, so I will try to source some gel ones. I had something called Berocca a few times a day, which really helped, but then I found my tummy became too acidic. I know better days are coming—ha ha, love that song—but it's so awful when you just can't quite see it. I really appreciate you replying; it has helped. Would love to know how you get on.

Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister

Wow, what a lovely kind message you sent me. Deffo put a smile on my face, thank you. There's definitely some power in sharing 😁. I just can't seem to absorb the amount from my food. I believe this started when I had UC as after the op I was bleeding and rushing to the toilet stopped, but the fatigue etc. levels are the same. I was told it was just my body getting used to it, but now 13 years on I think it's a bit of BS from the consultants. I was told I could get back to work and live a normal life with a bit of change, but I just don't feel I have passed the starting post, apart from 7 months last year. I know I am lucky with the functionality of it as I have no bother. Let's hope change is gonna come as Sam says.

Maybe try to eat more red meat, get as much sunlight as you can, and cook everything you make at home from a good cast iron pan. It may or may not help, but it's worth a try if you've been struggling this long.

Don't let it 'get a hold on you.' Seek the sun, ten minutes under it and you won't need those supplements. Get a Belgian Malinois or GSD or a big dog, it won't let you be unless you take it out. All the best wishes.

"Deffo" need a change. Sometimes a new set of eyes is the ticket.

By that I mean new doctors, consultants, etc.

Doing this myself saved my life.

I left my old gastro and went with a new group of gastros.

Change can be good if you know your body well enough to aid in recovery.

Assist these doctors when they tell you one thing, challenge them on it.

I found textbook doctors can be lethal. Yes... lethal... dangerous being inexperienced or closed-minded stubborn.

Fudge them.

Most of the time when I meet new doctors, I tell them I'm not a textbook case. You need to keep an open mind! Doctor!!

That's my beginning.

You need a new one. No need to suffer. Be your own advocate.

Hi, welcome aboard. I know you said you struggled with the iron capsules, and so did I. There is a liquid formula instead called Feradate. I must admit I had to get a consultant to write to the GP for the change because it's more expensive for them to prescribe, and it's not normally on their formulary. Xx

Hi Sarellie, welcome to the site. Have you had your thyroid checked lately? And as others said, get out in the sunshine.

Hi Sarellie - I would suggest getting your vitamin B12 levels checked as well. I had Crohn's 35 years ago, and the part of the intestine removed was where B12 is assimilated. This also led to a vitamin D deficiency, which went away after getting a monthly injection of B12 - either you, your doctor, or chemist can do the injection. No ostomy at this point; the urostomy came 30 years later as a result of bladder cancer. Welcome to the site, btw. After the injection, you will feel like swimming the channel, climbing the Matterhorn, and your partner won't know who to thank! Best, Bryce

Hi, nice of you to reply to me. I do try to eat red meat, but I never notice the difference. I might look up some new recipes lol and try again.

This site is wonderful, with different responses worldwide. My blood tests always come back saying my B12 is fine in the mid-level.

LOL typo site

Hiya, hope you are well in Pakistan. I have a very energetic and persistent Staffie who makes me go out, and my neighbor's dog will only go out with us. I totally get your comment; she has turned my life around. I could barely bend or walk when I got her, but I had my big operation, and I then developed lung clots, so I got her to keep me moving. She clearly believes she is entitled to 2-3 walks a day. I can walk well now, 8 years on. Unfortunately, I collapsed 2 weeks ago when out with her, and now I can only do very short walks every 3 days as I get so tired and fatigued. My son helps, but I feel so guilty as she is so bored. I am sitting around on my own, waiting for my levels and constantly meditating to just be present, with her big eyes on me full of hope. I haven't been this bad with her for a long time. It's crazy that after such big operations, there's no decent aftercare.

Hi Caz, fellow UKer lol new word. I will speak to my consultant about it. I have never heard of it, will have to Google.

Evening Ron in Mich, these are all places I hear about on the TV. I presume it's Michigan. I am normally out all the time. I moved to a flat with a garden to see if that made a difference. I don't know what happens with my vitamin D, but it must just ping off me as I never seem to sustain my levels. Something called Berocca helps, but I can't take it constantly as my tummy turns acidic, then I can't get anything in me.

Evening warrior, you are dead right. I have to tell them what I want now and complain if I don't get it. Otherwise, my life is never going to change. I know eventually my levels will come up, but within a year they are back down again. I just don't want this to be my life; it has to change somehow.

Hi Sar,

First, are you sure the issue is your Vitamin D and iron levels? If you're not sure of that, meaning from test results, you need to have a full battery of micronutrient testing done to find out what's up. Your gastroenterologist should be all over this. If you do know it's your Vitamin D and iron, the simple solution is sublingual supplements. They get absorbed under your tongue and get into your bloodstream without having to go through your stomach. You can take them repeatedly during the day and they only take a minute or so to dissolve. Your gastroenterologist can suggest a level to start at, then retest for those two things in a couple of weeks to see where you stand, and then increase, decrease, or stay the course as required. Vitamin D and iron are probably the two easiest vitamins/minerals to supplement, and sublingually are a slam dunk. If your gastroenterologist has no clue, find a good dietitian. Yours should be an easy problem to solve if it's a vitamin/mineral deficiency.

;O)

Tiredness and fatigue are common problems among ostomates. When I had my operation, just a few telephone calls would do me in, but it goes away in time, and so will yours. Hopefully, some of the suggestions offered by the knowledgeable people here will help. In the meantime, your staffie is there to keep you occupied. All the best wishes.

The tiredness and fatigue are probably due to the low iron. Ferrous sulfate (150 - 200mg) is the gold standard for the treatment of iron deficiency. Unfortunately, ferrous sulfate is associated with a significant increase in gastrointestinal-specific side effects. Gastrointestinal side effects include nausea, flatulence, abdominal pain, diarrhea, heartburn, constipation, and black or tarry stools. I also have trouble tolerating oral iron supplements. When you can't tolerate the oral supplements, the next course of action, as you already know, is intravenous (IV) iron. The long-term implications of this IV treatment are unknown. I did receive IV iron (200mg) during my long stay in the hospital after initially having to get a transfusion.

There is another more novel advancement you may want to try based on sucrosomial iron. A very detailed, scientific paper is contained at the following link:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10305423/

SiderAL is a brand name product containing sucrosomial iron. A link to it is below:

https://www.sideral.it/en/sucrosomial-technology/sucrosomial-iron/

SiderAL Forte is the product you may want to consider:

https://pharmanutra-us.com/products/sideral-forte

I recently learned of this and intend to give it a try.

Welcome to the site. You are right, there is a lot of help and support here. I had the benefit of having my ileostomy scheduled. Prior to the surgery, I joined this site and researched as much as I could about this. I received some great advice. I just celebrated my 4-year "Stomaversary." No regrets at all.

I take numerous supplements, meds for various other conditions, and eat fairly well. I still suffer from a lack of motivation and energy. I would buy tickets to concerts and sporting events then regret it the day of. Once I got to the event though, I would have a great time. I nearly canceled a paid-for trip to Ireland two days before.

I read a book on motivation and got a few ideas. I have a song list on my phone called "Morning Music." It contains such songs as "Live Until I Die" from country singer Clay Walker (who deals with Multiple Sclerosis), "Sweet Caroline" by Neil Diamond, and just about anything from Garth Brooks or The Piano Guys. Construct yours with any song that puts a smile on your face. I play this as I'm shaving/showering, etc. I then write a "To Do" list for the day. Once I cross one item off, it is easier to move on to the next and so on. My doctor has even suggested a few low-dose anti-depressants, aka "Mood Enhancers." I'll save that as a last resort.

I type this after I went to a Luke Combs concert with family last night. A great time was had by all. I probably couldn't say that 2 years ago. The point of this message is that you've got a lot of good advice from others. Your solution is here somewhere. Keep on trying and never give up.

Time to start my music and write my list for the day. Otherwise, I'll spend the next 5 hours watching golf on TV.

All the best to you.

SharkFan

Hi… I have had trouble with iron and vitamin deficiency since my ileostomy surgery in 2018. What my gastroenterologist is having me take is ferrous gluconate rather than sulfate because I can no longer absorb the sulfate type and the gluconate I can. I do very well taking it and it has kept my levels in the norm. It is an OTC vitamin but most pharmacies and Walmarts, etc. do not carry the ferrous gluconate, only the ferrous sulfate, so I have to have my pharmacy order it for me. I also take Vit B Complex but still do have trouble keeping my B12 levels up. My Vit D I take a Rx 50,000 units every 14 days. I need a recheck on it to see where it's at but I used to take one capsule every 30 days. 
These are a couple of things that you can also discuss with your doctor. Hope it helps.

I'm experiencing the same for the last few months. I've been taking iron and B vits. I'm outdoors a lot so it shouldn't be Vit D. I have an appointment with GP in a couple of weeks.

Really hoping they can sort us both out!

Hi Sarellie.

You certainly are troubled. I'm 8 weeks post-op. I have pernicious anaemia (lack of Vit. B12) so injections are required. Yeah, I'm low on Vit. D also. Iron level is low. I'm not into supplements either. How is your diet? I try to keep a varied diet, so I'm getting all-around vitamins. I counsel PTSD, so if I can offer any help, like a listening ear or talking things through. Yes, it's hard going. I'm ex-forces, so maybe stronger than some at getting through this. But with a little support and help, exchanging ideas and information, we can deal with this.

Yes, it's tough. But you are also made of tougher stuff. I know a lot about good eating and diets, so if I can help there, please just ask.

Brian

I've been taking Liposomal Vitamin D3 + K2 from Weightworld. Warning - they send emails saying there's new stock in and then when you order, they say they're out of stock. The order does turn up eventually - so the trick is to order well in advance of running out. It's liquid - and I don't know if it's psychosomatic, but I feel stronger and more able to get on with things on the days I take it. My Vitamin D is way low.
I'm waiting for my blood test results now. I think my iron is OK.

With iron supplements, it turns out that the iron supplements from the (UK) doctors have the least absorbable % of iron. The supplements giving the highest level of iron are those made from meat. Next is Floradix - made from plants. Least is those made from iron metal - which is the cheapest form and that usually supplied by the NHS.

I suspect that my magnesium levels are low, but I don't think my GP would test for that. I just take a small amount of Nutri MegaMag Muscleze Magnesium Glycinate in my water bottle and sip it during the day.

Something else to look at is your hydration. I have Vidrate, which balances electrolytes. I add it (on its own) to a water bottle and sip it through the day. It uses stevia to sweeten.

I find I sometimes need a Vitamin C boost, and that seems to help my energy levels.

You could explore what's needed to digest red meat to see if there's any help there.

Watching your output isn't too liquid - so it passes through the SI slowly enough to absorb the nutrients.

I hope this helps.

Warrior is definitely right about taking a proactive, almost adversarial, stance with doctors.  My nephrologist has put me in the hospital twice with bad advice, but he's the only nephrologist in town.  Too often people tend to bow down to whatever a doctor tells them just because he/she's the doctor.  Keep in mind, however, that 50% of all doctors finished in the lower half of their graduating class!  Especially with ostomies, I have found that ostomy nurses, for instance, and experienced ostomites, know more about dealing with post-surgical problems than doctors.  

I have heard of a one-horse town, but a one-town doctor for you blows.

Can you go out of state or county for a specialist?

Gotta have options these days.

How are the shingles? Mine cleared up in 4 to 6 weeks.

There are plenty of doctors here, but only one specialist in nephrology (kidney specialist).  You were lucky with the shingles clearing up so fast.  Mine seem to like living on my head and show no sign of departing the premises.  It's been since last October.