Whats your worst side effect

[theone]

whats your worst side effect

As if Crohn's isn't bad enough. We all know there are many side affects that come with it. Dealing with them can sometimes be just as much as a PITA as the disease itself.

Which if any have you had to deal with?
What course of action was taken to treat them?
When did you realize it was a side affect and not just another condition?

I pose these questions so that we can inform each other on possible clues to look for so others can be aware of them.
Here are some of mine:

Mouth soars
Arthritis
Fatigue
Fistulas
Abscesses
Pyoderma Gangrenosum

Having been through the last one which I will refer to as "PG" I can tell you be careful.
Its a serious skin condition that if miss-diagnosed can get out of control real quick. Signs to look for are a pimple like bump on your skin. It usually comes out on the legs but can come out anywhere. Mine came out on my leg and head. But unlike acne or boils it has a soft rubber like feeling. I can have a red ring around the base. It doesnt have a hard pointed head like pimples. It feels more like an ingrown hair and its very itchy.

If it is PG any you try to "pop" or lance it, it gets out of control very fast. The best thing to do is not touch it and see a dermatologist. If treated before it opens, it can be controlled.

If you think you can stomach the gross pictures of it, then Google some images of it. You'll probably find pics of it after it has ruptured.

 

[katiesue1506]

I get bumps when I'm flaring too. Kinda like what you explain, however mine always go away. When I squeeze them, clear liquid comes out. I think mine are just my body's inflammatory response because then my mouth sores kick in.

 

[theone]

Katie that sounds like excema. but i'm no Dr.

 

[teeny5]

My biggest has been fatigue so far...hopefully that is the worst. I just get tired so easily. Even know that I am at a normal weight and not flaring...still pooped! Next on my list would be general achyness (?). Not sure if it is related to fatigue, but I feel like an 80 year old woman a lot. If I sit too long my back starts to hurt, or my knee, or my arm. What ever body part I leave in one position too long starts to stiffen and hurt. You should see me try to clean out my guinea pig cage after I have been sitting too long...totally like a crotchety old lady!

Only thing I have found to try to help the joints is pilates. I feel great for awhile after doing a 20min. session. Try to do it 4 days a week, but I am not the most diligent person when it comes to any kind of exercise.

The fatigue I haven't figured out, just try to not do too much so I don't crash on the couch when I get home from work.

 

[MINI Cooper]

Worst effect from crohns: nausea/throwing up. Thats what was literally killing me-
starving to death, and led me to the picc line/TPN.

Worst effect from drugs: Horrible stabbing joint pain. From the IV Steroids.
I really wanted to cut my legs off, it was that bad.

 

[danman]

Fistulas have been the worst symptom.

If it wasn't for them, I could handle this illness fine.

It was Pen that first mentioned it to me a while back, and it got me thinking.
She said "the older you get, the easier it is to deal with Crohn's"

The more I thought about it, it became clearer to me.
It's not age that is the factor, it's the amount of time you've been having symptoms.

The body has a strange way of helping itself, for example, someone who looses an arm, is said to have a stronger other arm (I know it's used more, but it's an example)

I've found over the 20 years I've had this illness, that it is much easier to cope with than when I was younger. Apart from the aforementioned fistulas.

I don't have the need to run to toilets any more, even though I've got constant diarrhea, my body can deal with it. I always feel that my sphincter muscle is much stronger than a normal person.
Proof of this is when I have a colonoscopy. When I drink the cleanprep beforehand, it generally has no effect on me. I can drink it, and go to bed. It will come out when I want to go to the bathroom. When I was younger, I had to sit beside a toilet when drank it.

For my ileostomy, I had to drink twice as much cleanprep as other patients in the ward. It simply has no effect.

My point is this. The body changes over time to adjust to Crohn's. You still have the symptoms, but the body can deal with them better.

Fistulas are my only downfall.

 

[CD68]

Fatigue is the worst for me

I'm so tired I can't think straight most of the time and I can only stay active (get out of bed ) around my house for a total of four to six hours.

 

[theone]

I'm always tired. its a part of life at this point. everyone knows that at some point if I'm around them that I'm going to take a nap.

it's tough to deal with when my wife or kids are all geared up to do something and all I can think about is crawling into bed for a 3 hour nap.

 

[katiesue1506]

Nah its not excema. These are just random little dots that will show up. Maybe 3 or 4 at a time in complete different parts of my body (arms, legs, torso are most common) I have NO CLUE what they are, but they go away whenever I get my flares under control.

 

[cheeky]

my worst crohn's side effects (prior to prednisone) have been:

joint pain - this was the worst side effect, to the point i was originally diagnosed with Palindromic Rheumatism, it was pretty bad.

severe cramping/nausea after eating - this was probably the second worst symptom

then the fatigue/feeling very lethargic... so hard to get up in the morning for work and get through the day



blood in my stool - hemmoroids and an anal skin tag (although i had the skin tag removed a few months ago)

skin changes (i.e. red sore nickle sized bumps that would develop on my calves and ankles around the times my joints were inflamed...then they'd leave a dark mark behind... still have skin discolouration on my ankles and calves as a reminder)

also not 100% sure if it's the crohn's but i suspect it is cuz i've read eye problems are also a symptom .... i have noticed an increased sensitivity with my eyes, for example i had an eye liner makeup that i always used to wear, then suddenly i became allergic to it - if i wore it, my eye lids would itch and become a bit puffy and red... which was very unusual for me... plus my vision sometimes gets blurry and my eyes get tired easily... i'm guessing this is the crohn's i don't know.

 

[Zman]

My worst side effect is from being on very high doses of Pred. Becoming very irritable to the point of being crazy . Uncotrollable rage then the severe depression coming off of it.

 

[ErinDF]

Fistulas, fistulas, fistulas, fistulas. Hands down. They caused all these other horrible side-effects, like painful skin infections, but it all came back to the fistulas.

Boo.

P.S. Though the manic behavior the first time I was on Prednisone was no fun either, that was just 10 years ago, so it seems so much less pressing.

 

[CKnowsBest]

I think Danman makes a fair point. I too can control my diarrhoea to the point where if I ignore it long enough, the need to go actually goes away. I can also look completely relaxed whilst in excruciating pain.
However, I do think while physically it's easier to deal with the disease as I get older, psychologically it's harder.
When I was small I used just accept my problems and not think about them.
Now that I'm in college I get more stressed out about it cos now I fully comprehend the seriousness of my illness and the potential it has to literally halt my life and my ambitions.

 

[fenway1971]

Damn...I'm lucky not to have had a fistula.

For me it's fatigue coupled with the crazy side effects of Prednisone (bloating and roid rage).

 

[s.a.m.]

my worst crohn's side effects (prior to prednisone) have been:

joint pain - this was the worst side effect, to the point i was originally diagnosed with Palindromic Rheumatism, it was pretty bad.

severe cramping/nausea after eating - this was probably the second worst symptom

then the fatigue/feeling very lethargic... so hard to get up in the morning for work and get through the day



blood in my stool - hemmoroids and an anal skin tag (although i had the skin tag removed a few months ago)

skin changes (i.e. red sore nickle sized bumps that would develop on my calves and ankles around the times my joints were inflamed...then they'd leave a dark mark behind... still have skin discolouration on my ankles and calves as a reminder)

also not 100% sure if it's the crohn's but i suspect it is cuz i've read eye problems are also a symptom .... i have noticed an increased sensitivity with my eyes, for example i had an eye liner makeup that i always used to wear, then suddenly i became allergic to it - if i wore it, my eye lids would itch and become a bit puffy and red... which was very unusual for me... plus my vision sometimes gets blurry and my eyes get tired easily... i'm guessing this is the crohn's i don't know.

i have skin tags as well though never had surgery on them. Did you find that they healed well once removed?

 

[jamie2462]

Fatigue
Loss of apetite
erythema nodosum (leg sores and feet that make you not want to walk)
arthritis
fistulas/fissures
abdominal pain on lower right side

HONESTLY THOUGH - the prednisone when I was on the max allowable to clear up my flaring - the instant mood changes near killed me. I'd go from bawling one second either happily or from depression to SEVERE anger for stupid little things a split second later and I couldn't control it...I almost tore my sister's head off one day...Eeeks...That scared me more than the fistulas even.

 

[daisy_dueller]

I have a fistula...but it's not caused me too many problems at this point, and it's been hanging around for a couple of years, just not doing much of anything...

for me, the worst two symptoms are the constant D (that I've had since I was 12), and the fatigue...some days it feels as if I could literally fall asleep standing up.

 

[cheeky]

i have skin tags as well though never had surgery on them. Did you find that they healed well once removed?

first of all, the procedure was very quick... and although after the freezing wore off i was a little sore, it was not as painful as i thought it'd be...i was scared about having to have a BM during the healing process... but i was okay the first 2 days... then on day 3 i had a big BM and had A LOT of bleeding! but that seems to be an issue i have in general... i was concerned i broke the stitches but i was ok.

on the first day i looked in the mirror at the area, and it looked smooth... during the healing process i would keep it clean... and used baby wipes when i went to the washroom...and polysporin...

within a few days i freaked out a bit cuz it looked like i had 2 little bumps in place of the skin tag that was removed!!! :eek2:

but then i read that it can take months for the swelling to REALLY go down and i just didn't worry about it and eventually the swelling did go down... but there is still just a very small bump there (in the place where he had stitched)... really it isn't that bad of a bump... not nearly as noticeable as the skin tag.

i only had one skin tag.


now, he did warn me that there is the potential for it to come back... but i still decided i'd prefer to have it removed.

i'm glad i did it... and i'm lucky i didn't have any problems with the healing.


btw - i had the surgery november 2008 which was BEFORE i knew i had Crohn's... i'm not sure if they would've still done the surgery if they knew i had crohn's... cuz maybe it's more risky? i dunno

 

[mommy1st]

My worst side effects from Crohns would be constant diarrhea, acute kidney failure from dehydration, bladder fistula and peritonitis, other then that this disease is a walk in the park.

 

[kello82]

worst side effect is emotions. whether its prednisone induced rage or sobbing uncontrollably, or just utter sadness at not being able to enjoy something simple, the emtional rollercoaster of crohns is definitly the worst.

@s.a.m.- i also had a skin tag removed and it wasnt too bad. i didnt have to have stitches for it though, it healed by itself. but it definitly was pretty sore for a couple days. walking was a bit uncomfortable.

@danman and Cknowsbest- thats interesting that you both have that point. ive dealt with disease for a long time as well (9 years diagnosed and 4 before that of symptoms) yet i have a far weaker sphincter muscle than normal people. and i feel like im more sensitive to stuff like bowel prep. only a half of a normal dose had me pooing clear in less than an hour! and that was even after i threw up a load of it. maybe when i hit the 20 year mark i will have guts of steel too?
hehe one can hope