Share Facebook
Crohn's Disease Forum » Support Forum » Vent Away » Tired of being sick!


 
05-21-2013, 02:30 PM   #1
723crossroads
Banned
 
Join Date: Jul 2012
Location: USA

My Support Groups:
Tired of being sick!

Hi everyone,
I've been on this forum for almost a yr. now and don't know how I would survive without you guys. Some of you and you know who you are have become like my best friends. I have been doing good for a long time but then about 6 wks ago after having my gastro do a catscan and telling me my ulcers were gone, am very sick. Sick in the stomach, tired, bodyaches arthrtis flares etc.... I get what I call a stomach flu every week that lasts 2-3 days. Been living on immodium almost everyday for awhile now. Is this crohn's symptoms would you say? I am so tired and frustrated and my poor husband is always worried about me. Please any answers?I was diagnosed in Aug 2011 with crohn's in ileum area.My last gastro appt was a total disappointment. He said with no ulcers seen that he is calling it IBS. Can you have crohn's and then it can go away? Or is it just in remission and why all the stomach problems and acid in my throat? I just don't know what to think.Does anyone else have these symptoms?

Last edited by 723crossroads; 05-21-2013 at 10:35 PM.
05-22-2013, 05:31 AM   #2
UnXmas
Banned
 
Join Date: Oct 2012

My Support Groups:
Hey, sorry you're feeling so ill. I often find the severity of my symptoms is not matched by the extent of disease revealed by test results. I think our digestive systems just fail to work properly sometimes, even if we're not technically in a flare. Thinking about what our digestive systems go through when we are flaring, I think there's quite a good chance that even when we go into remission and test results show no more inflammation, some of us will never have a normal digestive system like those who've never had Crohn's.

But it could be that you have something else wrong - having Crohn's doesn't make us immune to other illnesses after all.

Unfortunately doctors often go by the test results, and assume that if our tests are good, we can't be having any serious symptoms that affect our quality of life.
You're definitely not the only one this happens to. I know how frustrating it is when you almost want to have positive tests so that doctors will treat you.

It is so difficult to pinpoint the cause of symptoms sometimes. I would suggest asking for another doctor's opinion, but often doctors seem not to know anymore than us!

I really hope you feel better soon.
05-22-2013, 10:05 AM   #3
723crossroads
Banned
 
Join Date: Jul 2012
Location: USA

My Support Groups:
I just found out that Effexor xl can cause withdrawal symptoms that can mimic flu and stomach aches really bad. I have been skipping days to try to slowly wean down. You can't do that with Effexor. Unlike regular serotonin reuptake inhibitors, Effexor and Wellbutrin also have noripinephrine and this anti depressant doesn't build up in your system like prozac. So you skip one day and you can have these symptoms. The site said to take one and if you feel better, that was the cause. I did and felt better! So, I am trying a different way with the help of my pcp which I will be seeing in a few weeks. I gained 30 lbs from effexor and Inderal I am on for essential tremor. Plus Effexor makes me so hot and summer is here for us! I can't take pouring with sweat another year.
05-22-2013, 06:57 PM   #4
lizbeth
Forum Monitor
 
lizbeth's Avatar
 
Join Date: Feb 2013
Location: bushmills, United Kingdom

My Support Groups:
Hi there I'm sorry you've been having tougher than usual . It's so difficult trying to decide what it is that's causing the additional trouble, our bodies are such complex things. I was wondering, if it was possible you had eaten something that didn't normally give you any bother? There are so many aspects to consider...... It's mind boggling. Hope you feel better very soon, take care.
__________________
Lizbeth
05-22-2013, 07:53 PM   #5
723crossroads
Banned
 
Join Date: Jul 2012
Location: USA

My Support Groups:
Hi there I'm sorry you've been having tougher than usual . It's so difficult trying to decide what it is that's causing the additional trouble, our bodies are such complex things. I was wondering, if it was possible you had eaten something that didn't normally give you any bother? There are so many aspects to consider...... It's mind boggling. Hope you feel better very soon, take care.
Thanks! I really do believe it is the Effexor withdrawal now. I am tapering slowly and it does cause these symptoms in alot of people. So, I am just not skipping days anymore. Just cutting back on amount I take. I pray it works. Tired of feeling miz!!!
05-23-2013, 04:36 AM   #6
lizbeth
Forum Monitor
 
lizbeth's Avatar
 
Join Date: Feb 2013
Location: bushmills, United Kingdom

My Support Groups:
My sister has been reducing her anti-depressants too but had to do it really slowly but she got there in the end, not off completely but on a much lower dose than previously. Good luck tapering I know it's not fun.
05-23-2013, 09:41 AM   #7
723crossroads
Banned
 
Join Date: Jul 2012
Location: USA

My Support Groups:
My sister has been reducing her anti-depressants too but had to do it really slowly but she got there in the end, not off completely but on a much lower dose than previously. Good luck tapering I know it's not fun.
Thanks Lizabeth! I am doing it slow. If I get too depressed I will ask for a different one that doesn't cause the withdrawal symptoms. You never know when You aren't going to have insurance.I want to be on the least amount of meds as possible with things the way they are in this country.
05-23-2013, 10:16 AM   #8
Niks
Forum Monitor
 
Niks's Avatar
 
Join Date: Nov 2012
Location: Swindon, United Kingdom

My Support Groups:
(((hugs))) I really hope you work out what is going on soon, and feel better!

__________________
Daughter 22, 1. Upper GI and colonic dysmotility with viscernal hypersensitivity.
2. Predominant Constipation with slow colonic transit and moderate gastroparesis,
3. Nephrolithiasis
4. Osteopenia bordering on osteoporosis



Peristeen Irrigation every other day.
Citramag/Picolax

Waiting for bowel stimulator!
05-23-2013, 11:42 AM   #9
lizbeth
Forum Monitor
 
lizbeth's Avatar
 
Join Date: Feb 2013
Location: bushmills, United Kingdom

My Support Groups:
Yes indeed, we complain over here about the NHS but we really are very lucky in that we don't need to worry so about that, I'm sorry that this has to be a consideration for you . My mother-in-law has been on ants-d's for about 12 years now and has reduced them slowly, now she manages on 1 tablet every other day , she knows that she needs that 1 and if she doesn't take it she feels a difference. It would be great if you were able to get them right down, I will pray your tapering goes well.
05-23-2013, 12:30 PM   #10
Honey
Forum Monitor
 
Honey's Avatar
 
Join Date: Mar 2013
Location: United Kingdom
Hi there,
dealing with the changes and fickle nature of our illness can make you feel low! It is only natural.
I too have M.E. so I have learned to pace myself, by having an hour or so bedrest each day. Do not push yourself but listen to your body ,and be kind to yourself. I am glad you are weaning yourself off anti depressants. It does help to talk to those suffering Crohns too on this site as we all understand one another. Wishing you well.
05-26-2013, 06:06 AM   #11
Niks
Forum Monitor
 
Niks's Avatar
 
Join Date: Nov 2012
Location: Swindon, United Kingdom

My Support Groups:
Hey

How are you doing? Hope you're feeling a little better! When your GI change your diagnosis did he stop meds?? I hope you're looking for a new Doctor!

xx
05-26-2013, 06:48 PM   #12
DougUte
Senior Member
 
DougUte's Avatar
 
Join Date: Jul 2010
Location: Kaysville, Utah

My Support Groups:
Teresa, I'm glad you found the Effexor is the cause. I am on Paxil, which I have been on for about 20 years. It its no longer working like it was. A month ago my pcp added Seroquel. I am doing better again with that in the mix.
__________________
Surgery Oct 12, 2010

Crohns Medicines:
Started Humira June 22nd, 2011
Increased to weekly injections on November 1st, 2016
Due to the insurance company, Humira ended on January 31, 2017.
Started Entyvio February 9th, 2017
Loperamide 3 capsules twice a day
Vitamin B6, B12, Folic Acid
Vitamin D3 10000 I.U.
Nature Made Multivitamin
05-26-2013, 11:07 PM   #13
723crossroads
Banned
 
Join Date: Jul 2012
Location: USA

My Support Groups:
Hey

How are you doing? Hope you're feeling a little better! When your GI change your diagnosis did he stop meds?? I hope you're looking for a new Doctor!

xx
I am doing better now that I have reduced the dose of Effexor and weaning off like that. I am not currently looking for a new Dr. But if I continue to have problems, I will. I am going to my Pcp on the 14th which I love and will talk to them about my pain problems. The shoulders and elbows are really bad now and numbness in hands. My neck is jacked up from car accidents and spurs etc.... It causes a lot of this.
I am still on meds for the acid problems and gas and D when I have it.
05-29-2013, 10:09 AM   #14
723crossroads
Banned
 
Join Date: Jul 2012
Location: USA

My Support Groups:
I have been doing more research on here and I have erythema nodosum for sure. I also have white bumps all over my feet and neck and white patches on my arms and some on my legs as well. The patches on my scalp used to itch so bad it drove me nutty.I do have arthritis and degenerative spine had back surgery for lower back herniation, spurs in neck and scoliosis and stenosis (but not bad yet.) I had kidney cancer but am in remission. Having bile acid problems again and had to go back on Cholestyramine so my bum doesn't peel off. D a lot. Had 10 BM's yesterday and that was after taking Lomotil. The gastro told me that I have IBS even tho I had ulcers in 2011 and it was in ileum and colon area. I have sinus problems, eye pain and irritation sometimes. How can all this be IBS? Can't eat a lot of things anymore.
05-29-2013, 11:07 AM   #15
lizbeth
Forum Monitor
 
lizbeth's Avatar
 
Join Date: Feb 2013
Location: bushmills, United Kingdom

My Support Groups:
Ever feel like you're banging your head against a brick wall? What on earth is he/she thinking of suggesting IBS? Sounds like it's time for a second opinion. Teresa I really hope your luck turns around soon, God bless.
05-29-2013, 10:09 PM   #16
723crossroads
Banned
 
Join Date: Jul 2012
Location: USA

My Support Groups:
Thanks sweetie! I am going to my GP on the 14th . They honestly seem to help ore than the gastro.
05-29-2013, 10:54 PM   #17
DougUte
Senior Member
 
DougUte's Avatar
 
Join Date: Jul 2010
Location: Kaysville, Utah

My Support Groups:
I have been doing more research on here and I have erythema nodosum for sure. I also have white bumps all over my feet and neck and white patches on my arms and some on my legs as well. The patches on my scalp used to itch so bad it drove me nutty.I do have arthritis and degenerative spine had back surgery for lower back herniation, spurs in neck and scoliosis and stenosis (but not bad yet.) I had kidney cancer but am in remission. Having bile acid problems again and had to go back on Cholestyramine so my bum doesn't peel off. D a lot. Had 10 BM's yesterday and that was after Lomotil. The gastro told me that I have IBS even tho I had ulcers in 2011 and it was in ileum and colon area. I have sinus problems, eye pain and irritation sometimes. How can all this be IBS? Can't eat a lot of things anymore.
Teresa, my expertise in this matter, which is having been misdiagnosed with IBS for over 6 years before my current GI called it right, I'll tell you right now I don't think you have IBS. You have too many IBD related issues. Go find another GI. Please.
05-30-2013, 01:08 AM   #18
723crossroads
Banned
 
Join Date: Jul 2012
Location: USA

My Support Groups:
Thanks Doug, sometimes I just don't ever even want to go back to any. All they do is order tests and I can't take biologics or steroids due to kidney problems and cancer risk. I am just trying to be careful what I eat and control it that way.
05-30-2013, 01:26 AM   #19
Niks
Forum Monitor
 
Niks's Avatar
 
Join Date: Nov 2012
Location: Swindon, United Kingdom

My Support Groups:
definitely get a second opinion! I really don't understand some doctors. If you don't fit into a neat little box they just don't seem to know what to do!!

(((hugs)))
05-31-2013, 11:11 AM   #20
723crossroads
Banned
 
Join Date: Jul 2012
Location: USA

My Support Groups:
I am going to my PCP on the 14th and see what they say and who they would recommend in my area.
06-05-2013, 04:57 PM   #21
mwkwmn
Forum Monitor
 
Join Date: Jan 2013
Location: Kentucky
Hey friend I am so sorry your not feeling well. You are always upbeat and positive and your words give me and lots of others here on the forum support and hope that we need. I'll pray for you to get better and hopefully to hear those happy words from you soon take care.
__________________
mwkwmn
Dx
Crohns 1993
Adrenal insufficiency 2005
Blood clots 2006
Low testosterone 2006
Osteoporosis 2011

Meeds
Prednisone 7.5 mg
Lortab
Zoloft
Coumadin
Entocort
B 12 inj
Testosterone inj
Citrical with D
06-05-2013, 11:58 PM   #22
723crossroads
Banned
 
Join Date: Jul 2012
Location: USA

My Support Groups:
Thanks for words of support and kindness. Means so much to me. I am doind stool samples this week. I had to produce runny one for electrolyte test! Had to go off cholestyramine and hoping to get the sample they need by Friday. I already gave then the one for cdiff which I know I do not have, never have had it.When I get at my PC appt. I am asking for bloodwork of every kind. Also better thyroid testing too.Help with arthritis pain and fibro.
06-06-2013, 12:52 AM   #23
purdueCrohns
Forum Monitor
 
Join Date: Mar 2013

My Support Groups:
I have a recommendation for a second opinion. Take a trip to the Cleveland Clinic. It's reasonable in a day trip from Pittsburgh (don't worry we won't make you be a Browns fan). Their gastro team is one of the best in the world for Crohn's Disease treatment. They literally wrote the textbook used in med schools around the world. The Chief Medical Operations Officer for the whole hospital was instrumental in the development of treatments using TNF-inhibitors in crohn's disease (remicade, humira). I recommend them as loudly as I am able to on a message board.
__________________
Remicade
Petasa 1000 mg x 4
Prevacid
Claritin
Vitamin D (2000 IU)
In Remission since 2001

Remicade-induced Psoriasis
Pilonidal Disease
06-06-2013, 04:25 AM   #24
Niks
Forum Monitor
 
Niks's Avatar
 
Join Date: Nov 2012
Location: Swindon, United Kingdom

My Support Groups:
Hey friend I am so sorry your not feeling well. You are always upbeat and positive and your words give me and lots of others here on the forum support and hope that we need. I'll pray for you to get better and hopefully to hear those happy words from you soon take care.
^^ yep all of that!

Really hope something shows up on some of your tests! I find it incredible that they can diagnose something then change it in a flash! Although as you know Jaime has been through pretty much every diagnosis going and I am sure that they still don't have the right one.

Good luck, have everything crossed for you xxx
06-10-2013, 10:42 AM   #25
723crossroads
Banned
 
Join Date: Jul 2012
Location: USA

My Support Groups:
I am going to my Dr. this Friday and he wanted me to get bloodwork done first. So, I asked for a calprotectin test because i have been having so much trouble with pain and D. So, I hope and pray it shows up on the bloodwork. I still don't know what to take as far as the body pain/arthritis and fibro. I can't take painpills 24/7. I had cancer and am in remission four yrs. this August (Kidney). So, Dr's are hesitant and so am I about taking a biologic because of the cancer risk (Lymphoma).Anyone have any info about what I could take. I already tried the antidepressants and they just made me gain weight for sure. Didn't help the pain! Please help if you know anything that works. I do take ginger capsules everyday. Thanks!!!!
06-11-2013, 07:11 AM   #26
lizbeth
Forum Monitor
 
lizbeth's Avatar
 
Join Date: Feb 2013
Location: bushmills, United Kingdom

My Support Groups:
My GP recommended I try curcumin (cumin) capsules as it has natural anti-inflammatory properties, I haven't yet though so don't know if it's any good. Good luck on Friday, hope you get some answers.
06-11-2013, 07:29 AM   #27
723crossroads
Banned
 
Join Date: Jul 2012
Location: USA

My Support Groups:
I forgot to mention I can't take nsaids either because of my kidneys. I have cysts on my left one and the cancer was in the right one.I do occasionally though when I can't take it anymore.
06-11-2013, 09:42 AM   #28
lizbeth
Forum Monitor
 
lizbeth's Avatar
 
Join Date: Feb 2013
Location: bushmills, United Kingdom

My Support Groups:
I can't take nsaids either and that was why he suggested the other, though I would definitely want to know a lot more about them, especially in your case.
06-11-2013, 07:42 PM   #29
purdueCrohns
Forum Monitor
 
Join Date: Mar 2013

My Support Groups:
Look up taking advil is like a game of advil roulette for someone with Crohn's. It won't always screw you up but when it does, it can be a flare.
06-13-2013, 05:54 AM   #30
CronoMush
 
Join Date: Dec 2012
Location: Leicester, United Kingdom
Those symptoms seem to co-incide with some of mine a while back, especially if the sickness in the stomache comes shortly after eating something?

I had similar symptoms including the erythema nodosum for two or three weeks when I had Sarcoidosis. Didn't have the white bumps though. I did have joint pains that affected different joints every few days. I also had a fever some nights for no apparent reason. The GP thought it might be viral at the time. I had the sickness in the stomach feeling for two or three weeks before I ended up in hospital and told I was suffering from hypercalcaemia and my kidneys were packing up.

During the course of the illness I also felt very sick and very tired and got to the point of, as you say, tired of being sick. I am sure many conditions can cause this however!

Suspicions were raised months earlier following a routine chest x-ray - an area it commonly affects - because I also had a dry cough for several weeks. This found some shadowing on my lungs. This over a period of weeks led to other tests and .... eventually... to a diagnosis, but not before I ended up in hospital as mentioned already.

Sarcoidosis is apparently quite rare and apparently difficult to diagnose, but there were obvious signs in the blood chemistry that something was systemically wrong. It just took a while to put all the pieces together.

Off course, since this doesn't match everything you mentioned, it may be completely off the mark. Hopefully your blood test will reveal what's going on so let's hope your doc can sort it out soon.

Incidentally, Crohn's can flare up and also go into remission. I've had at least one endoscopy result that showed no ulceration despite previous examinations showing significant ulceration and biopsy indicative of Crohn's. Although there was no ulceration, it was still very painfull when the camera passed certain parts of my intestines!

Crohn's can affect other parts of the GI tract so if its currently in the Ileum (mine affects this area as well) or another part of the small intestine it won't be picked up by the camera.

As an aside, if your Crohn's does affect the area near the Ileum, it might be worth keeping an eye on your B12 levels, although for now, this may be a secondary consideration. B12 is absorbed in the Ileum and low levels can lead to fatigue and other symptoms.
Reply

Crohn's Disease Forum » Support Forum » Vent Away » Tired of being sick!
Thread Tools


All times are GMT -5. The time now is 10:25 PM.
Copyright 2006-2017 Crohnsforum.com