Always Tired

[Jenn has Crohns]

Is anyone else tired all the time? No amount of coffee, vitamins, etc... can fix this. The only thing that I want to do is sleep. If anyone asks me "what do you want?" I always say, the chance to sleep for about 24 hours straight. I know that wouldn't and can't happen but that's my wish.
Anyone have any cures for fatigue? I believe I'm tired because my ileum and cecum and also a foot of my small intestines were removed in 2013 and now my bowels just don't absorb very good.
I was diagnosed with severe crohn's in 2012 with chronic anemia. I also "go" anywhere between 5-15 times a day.
Drugs don't work and I don't want to start a biologic. Cancer runs in my family so I'm not taking any chances with biologics of any sort.

 

[awoenker12]

I was diagnosed with severe crohn's in 2012 with chronic anemia. I also "go" anywhere between 5-15 times a day.
Drugs don't work and I don't want to start a biologic.

I understand that you don't want to start a biologic, but the biologics are some of the best drugs to treat crohn's. I was on prednisone and 6mp, and after four months on being both drugs, I just could not taper off the prednisone. That meant that the 6mp was just not working. My next option was remicade. It was a lifesaver. Two days after my first infusion, I was symptom free. Now for others, it may take two or three infusions before you feel better. It all depends on the person and how they respond to medications. I also think starting biologics will help combat your fatigue, because fatigue is a sign of a flare. Also, try doing some light exercising such as taking a walk. I find that a little amount of exercise helps wake me up. Lastly, even though there is a risk of cancer with biologics, that risk is still extremely low. I hope you feel better!

 

[MarkStrobel33]

Is anyone else tired all the time? No amount of coffee, vitamins, etc... can fix this. The only thing that I want to do is sleep. If anyone asks me "what do you want?" I always say, the chance to sleep for about 24 hours straight. I know that wouldn't and can't happen but that's my wish.
Anyone have any cures for fatigue? I believe I'm tired because my ileum and cecum and also a foot of my small intestines were removed in 2013 and now my bowels just don't absorb very good.
I was diagnosed with severe crohn's in 2012 with chronic anemia. I also "go" anywhere between 5-15 times a day.
Drugs don't work and I don't want to start a biologic. Cancer runs in my family so I'm not taking any chances with biologics of any sort.

I also experience fatigue all day long, everyday! I was diagnosed with Crohn's disease in 2001. I had my colon permanently removed in 2009. Now, the Crohn's disease is attacking my small intestine and stomach.

I am taking a biologic, Entyvio (infusions) every 8 weeks and now, the Crohn's is in remission. However, the fatigue is worse than ever. The fatigue isn't being caused by vitamin deficiencies, anemia, insomnia, or a lack of exercise. I believe the fatigue is being triggered by all the meds I am taking for the Crohn's or by the Crohn's disease itself.

Recently, I came across a research article that I found most interesting, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5531543/ If you scroll down to 4. Discussion, it states that:

"The present study shows that fatigue is a frequent symptom in patients with IBD even in clinical remission."

So, if this article is correct, then there might be very little we can do to remedy fatigue.

 

[my little penguin]

Here’s the thing
Having chronic inflammation anywhere including your gut increases your risk of cancer
Regardless of what med you use
If you stop the chronic inflammation then the risk of cancer goes down


Are you in remission ?
When was your last scope imaging ?

That said if your not absorbing nutrients well
There are amino acid based formulas such as vionex which only needs a few inches of healthy intestine
This allows you to absorb the nutrients needed
You can drink it orally (Ds drinks neocate jr orally )
Or taken by an ng tube inserted nightly removed during the day

If you do all formula - no solid food (exclusive enteral nutrition -een)
That works as well as steriods to heal the inflammation
Some are lucky enough to stay in remission on 80%formula and 20% solid food after 8-9 weeks of een

Ds does supplemental een 50-60 % plus Stelara (low cancer risk ) and methotrexate

Good luck

 

[Jenn has Crohns]

I also experience fatigue all day long, everyday! I was diagnosed with Crohn's disease in 2001. I had my colon permanently removed in 2009. Now, the Crohn's disease is attacking my small intestine and stomach.

I am taking a biologic, Entyvio (infusions) every 8 weeks and now, the Crohn's is in remission. However, the fatigue is worse than ever. The fatigue isn't being caused by vitamin deficiencies, anemia, insomnia, or a lack of exercise. I believe the fatigue is being triggered by all the meds I am taking for the Crohn's or by the Crohn's disease itself.

Recently, I came across a research article that I found most interesting, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5531543/ If you scroll down to 4. Discussion, it states that:

"The present study shows that fatigue is a frequent symptom in patients with IBD even in clinical remission."

So, if this article is correct, then there might be very little we can do to remedy fatigue.

I do believe this to be true! Although it's disappointing. I have taken many drugs in the past. My Crohn's is just relentless to say the least. The only thing I haven't done is biologics but my gastro is telling me not to, unless I have to. I guess he sees lymphoma in my future if I do. He said I have liver issues and other markers to determine cancer if I were to start these meds. :ybatty:

 

[MarkStrobel33]

I do believe this to be true! Although it's disappointing. I have taken many drugs in the past. My Crohn's is just relentless to say the least. The only thing I haven't done is biologics but my gastro is telling me not to, unless I have to. I guess he sees lymphoma in my future if I do. He said I have liver issues and other markers to determine cancer if I were to start these meds. :ybatty:

I do understand your concerns. Chronic anemia can significantly cause fatigue. To treat the anemia would mean to treat the Crohn's disease.

I just did a Google search and I found some interesting articles related to your concerns:

https://www.webmd.com/ibd-crohns-di...-not-linked-to-short-term-cancer-risk-study#1

https://www.ncbi.nlm.nih.gov/pubmed/23470503

http://www.crohnscolitisfoundation.org/news/do-ibd-treatments-cause.html

I don't know if any of these articles point to a direct solution to your situation. However, I probably would get another GI's opinion as to how best to treat the Crohn's disease.

 

[MarkStrobel33]

I do believe this to be true! Although it's disappointing. I have taken many drugs in the past. My Crohn's is just relentless to say the least. The only thing I haven't done is biologics but my gastro is telling me not to, unless I have to. I guess he sees lymphoma in my future if I do. He said I have liver issues and other markers to determine cancer if I were to start these meds. :ybatty:

Another thing to consider is that Crohn's disease by itself can cause cancer, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2700422/ especially if left untreated.

 

[Bufford]

I am in a similar boat having had part of my large and small intestine removed nearly 20 years ago. Treatments have helped some, but in all cases they became ineffective over time. I gave remicade a try, but had to go off after the 3rd infusion due to lupus like side effects.
I manage my flare cycles with diet more effectively than drugs now, and find this route works best for me. Controlling stress is also very important, and is easier to do as time goes on.
Watch what you eat, particularly in the evening, and cut back or eliminate snacks nearing bed time. Do take daytime naps when the need arises. Don't overdo it with lifting and exercise. Being gentle to one's self mentally and physically.

 

[Guerrero]

Check your levels of iron and hemoglobin. I feel always weak and tired when my hemoglobin is low because of low iron levels..

 

[Glockola]

Previous surgeries and increased intestinal transit would lead to a diagnosis of short bowel syndrome and should primarily be treated with antidiarrhea medications such as Imodium or something stronger.

There are other medications. Some of the following.
bile-salt binders to decrease diarrhea.
anti-secretin agents to reduce gastric acid in the intestine.
hypomotility agents to increase the time it takes food to travel through the intestines, leading to increased nutrient absorption.
growth hormones to improve intestinal absorption.
teduglutide to improve intestinal absorption.

 

[Anna's Bandit]

Jennifer Has Crohns : Everyone here has some great insight and advice and recommendations. I've been "tired" for years. There is not a "one size fits all" solution. But I will add that I started Humira 3 months ago and I don't regret it. My sister has RA and has also started Orencia this year. I believe she was very hesitant about biologic side effects because she has a history of breast cancer and lupus. But she doesn't want to end up in a wheelchair, so she is giving the Orencia a try. Keep in touch and take care. Thank You to everyone for including some articles to read.

 

[awoenker12]

Lynda Lynda, it's nice to see you again!