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12 replies

Feeling Gross All The Time After Permanent Ileostomy Surgery

Tiffy-pooTiffy-pooMember
Hey gang,

I would like to know if anyone has had the following issues or figured out why.
I had UC, had a colectomy back in 1993. I had something called a straight pull-through until 2004 when it was revised to a j-pouch. I had chronic pouchitis and incontinence so I had the j-pouch removed and a k-pouch constructed. The valve failed on that so they did a revision surgery, and it failed again, so I had a permanent ileostomy surgery. When they do the j-pouch survey they use 30cm of ileum. When they do the k-pouch surgery they use 50cm of ileum. I assume I am missing 80 to 100cm of ileum in addition to the colon. I have felt a little worse after each surgery, so I have assumed I am not feeling well for that reason.

Since the last surgery I have been feeling more tired than usual, much lower energy. I don't feel up to doing much physical activity, and if I try to, my muscles feel like they are on fire and I get dizzy. I am also so lethargic and when I'm feeling particularly gross I will stumble around and walk into things. I feel like my vision is getting blurry here and there, and my finger tips lack sensation. I tried to go back to work and it didn't pan out very well so I am back on long term disability. I've managed to get my output under control, and found I have a fructose intolerance, so I cut that out. I am not really having high output or watery stool unless I eat or drink something nasty. I am pretty dehydrated, and get heat stroke if I am outside in the sun, so I drink a lot of water, cut out caffeine, and I am drinking a gross electrolyte drink my dietician gave me the recipe for, and that helps a little.

It's just getting frustrating that I am trying to do everything in my will to help myself, but I am still feeling so tired and groggy all the time. I am ok with accepting that it will be this way henceforth, but there needs to be medical reasoning for being on disability leave and my doctor doesn't know what's wrong. My colorectal surgeon has no ideas, and is referring me to a GI doc. Maybe this is something unrelated to my bowels? My iron is fine, as are my electrolytes, proteins, glucose, etc. B12 I get injected so it's not that. Everything bowel related is being ruled out. The Colorectal surgeon does not believe I have "Short Bowel Syndrome". What else could this be? Or what kind of specialist could I see? It would be nice to put a name to this issue.

The only thing I can think of is I am getting depleted on fat soluble vitamins, which the ileum absorbs. I know my vitamin D is low, but they apparently can't test me for the others. Vitamin A would make sense as to why my vision gets blurry.

Please throw your ideas my way!
Thanks and God bless!
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I get more tired than usual and much lower energy at times since my surgery a year ago,i don't know how much so it it is in actuality but i believe that the more that you have of your innards missing, the more it has an effect on your strength and energy level.

As far as Doctors figuring out what the issue is, iv'e come to the conclusion quite a while ago that not always do they know all that there is to know, therefore not to take their findings as the final word.

In regards to vitamin D, i was super low on it, and then i started taking four doses of it daily in order to regain the average level and after just a few weeks i started to fell the difference, i'm now down to two doses a day.
fqfqMember
wow, you have been through a lot and are very brave and pretty too! when was your permanent ostomy surgery? bowel surgery takes a big hit on me, and i don't feel decent for at least 1 year or so. are you taking smoothies or juices and supplemental nutrition, like ensure, carnation instant breakfast, or medical grade? sometimes TOO much water depletes electrolytes. i heard good things about Vitalyte. eat salty snacks to retain water better. you have been through a lot and lost a lot of intestine, so it is understandable your energy is low. chronic fatigue is what i have. sounds like you've had a blood workup already. hope you feel better soon and get things sorted.
WinniethePoohWinniethePoohMember
I was having issues with memory early this summer. Short term mostly, I drive for a living and I couldn't remember addresses and places Ive been to a hundred times. I added another bottle of water to the two I drink during the day. That fixed it. Dehydration must had been the culprit. I heard a mixture of Gatoraide and water is a good way to get hydrated.

Hang in there !!
runner4449runner4449Member
I don't how long you have been in your permanent ileo, but I know for me the 2nd step surgery took a lot out of me, and I initially had many of symptoms you and WinniethePooh mentioned. I almost blacked out at the pool this summer because it was so hot and humid, and I just get hydrated in such weather. I've been in my ileo loop for a bit over 12 weeks, and it really has been just the last few days I've felt better regarding my energy and hydration. It probably helps that the weather has been cooler, too. My husband and I have often thought it's because so much of my small intestine is at rest, therefore making it more difficult to absorb liquid and nutrients. It's taken a lot of diligence to correct these things. I hope you are able to feel better soon. I know it's hard when you feel like you aren't turning the corner. I literally was there last week myself with my very first post her, and then all of sudden I started feeling better this past weekend. Take good care of yourself, and keep up the good work.
georgiegirlgeorgiegirlMember
You have been through such a lot and you are amazing that you still have plenty of motivation. It's no wonder you feel like crap after all you've been through - I am surprised the doctors haven't confirmed for you that with all the surgeries, anesthetics and having a lot less bowel than normal you are bound to take a long time to recover.

It sounds like your electrolytes are out a bit (with the blurred vision etc) - you could try having drinks like gatorade regularly or diluted gastrolyte. I find if I am dehydrated like after exercise having just water makes me feel worse - I need to have something salty as well. Also you could easily be vitamin D deficient especially if you are not getting any sun on your skin at all. Vitamin D deficiency will make you vulnerable to infections and viruses and would definitely affect your energy levels. Try at least getting 15 to 20 minutes of sun on your arms and legs each day. Have they ruled out things like Epstein Barr virus which can give you chronic fatigue syndrome?

Anyway I hope you feel better soon.
Jan DollarJan DollarModerator, RN, retired
Since all your labs have been in the normal range, you can rule them out, sort of. Some people are more sensitive to one low level or another than other people. Those reference numbers from the lab are sort of arbitrary and based on averages. So, look at numbers that are in the low normal range. Perhaps those are actually low, FOR YOU. At least something to consider.

Could also be things like depression, lack of regular sleep, worry/amnxiety, whatever. Sometimes they can't really pin it down.

You can be sort of dehydrated without it showing up in your labs. It sounds like your body has been in a constant state of adaptation, so maybe it just needs more time for things to settle down. Hope that is the case for you.

Jan Smiler
Tiffy-pooTiffy-pooMember
I had this ileostomy surgeon in December 2011. It has been several months and I still feel like I am post-recovery, aside from not having a sore belly.

I am sure part of my problem is dehydration. I drink this electrolyte drink that contains these ingredients:
1500ml water
4.5 tbsp Polycose Powder
9/10 tsp Salt
1/2 tsp Salt Substitute (like No Salt)
3/4 tsp Baking Soda
I find that does help and makes me less groggy in the mornings. I wake up so dehydrated nowadays that I can drink so much fluid and not pee at all for a few hours. I have to carry that drink around with me now, drinking all day. I know that is a sign of dehydration. Water definitely doesn't help. Gatorade, smoothies and shakes and juices and many things like that cause "Osmotic diarrhea". This electrolyte drink is good because it contains Polycose Power, which is a carb supplement that is designed not to cause osmotic diarrhea.

My potassium and calcium are in the low end of the normal range, but my doctor doesn't think that is a problem. For years I've been on potassium, magnesium, calcium, B vitamins, Vit D, zinc, etc. My finger tips are getting numb so I think that is my calcium. I know the ileum absorbs fat-soluble vitamins (A,E,K,D) so I am considering taking a version of them that is water-soluble to see if that helps. Especially the Vit D because I've been on that for a long time and it's not making a difference.
SpookySpookyMember
Tiffy-poo, sorry you are going through this. I am not an expert but you did mention numb finger tips. This can be magnesium. I know you are taking it, but you may need to substantially increase your dosage. When my mag was low, I was given something like 3000 mg in a liquid dose at one point. It's worth checking out. I also agree that "low normal" may be low for you personally, so I would pay attention to those levels and make sure you are getting a boost in all those areas. My iron was "low normal" for years and I was told not to worry about it. It wasn't until after my surgery and I finally started supplementing, that I noticed a huge difference: I don't get cold anymore and I see to have more energy, and the only thing that changed is that I now take iron. So lower end of the scale can be significant to one individual over another.
Tiffy-pooTiffy-pooMember
I just wanted to let you all know the answer to my dilemma when I wrote this post. I have Multiple Sclerosis. The only reason I went in for an MRI of my brain and spine was because I felt like my memory was was getting really bad and my mom had dementia, so I demanded that be looked into. One link to nerve damage is the antibiotic Cipro, which I was on for several years for pouchitis.
Thankfully my symptoms aren't extremely painful or anything and I'm still mobile.
The other problem was Dissociative Disorder, depression, anxiety. I am glad I now know why things have been totally poopy for the last few years.
LesandiegoLesandiegoMember
I am so sorry to hear of your new diagnosis, but glad you finally have your answers. MS sucks and they once thought I had MS after my strange neurological event (infarction that attacked my myelin in my occipital lobe). Took me years to get a diagnosis and recover. I take 1200mg of neurontin a day and it helps with the residual nerve damage.

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