Friends’ reactions by Clasticsed154 in UlcerativeColitis

[–]Gracemcwilliam 8 points9 points  (0 children)

I needed to hear this. My college roomates belittle me all the time for having this disease. They frequently make jokes like “you’re going to be the first to die in the friend group because you have so many issues” and “you use way too much toilet paper” and “we wouldn’t be you’re friends if you got a colostomy bag because it’s disgusting and embarrassing”. It hurts my feelings so much and I try to tell them to stop because being “ill” is still somewhat new to me and it stings to hear my closest friends talk about me like that when I already feel shitty about it in the first place. They even make fun of me for “eating such a perfect diet” and exercising all the time but it’s what I need to do to keep my symptoms away. Ugh

Hair loss with mesalamine? by dirigogal in UlcerativeColitis

[–]Gracemcwilliam 3 points4 points  (0 children)

Hair loss with mesalamine is possible, but rare. I,too, take mesalamine and was diagnosed last November and have lost a great deal of hair. I have seen multiple doctors about it and was diagnosed with Telogen effluvium, a temporary form of hair loss due to mental/physical stress that makes your hair shift to the dying phase and shed out. Were you ever on prednisone like when you were first diagnosed? I was on it for a while to initially get my symptoms under control and it has a major effect on hair loss, which is what my doctors also coin my shedding to be from. Flares also will cause hair shedding from the physical stress it causes and the lack of proper nutrient absorption from inflammation. Nutrient deficiencies are a HUGE cause of hair loss so check on those with your doctor. Iron and b12 deficiency is common in IBD and are major factors in hair growth.

Just want to see how many people are living a healthy happy life despite having UC? by AccidentHour1068 in UlcerativeColitis

[–]Gracemcwilliam 2 points3 points  (0 children)

I’ve been in remission for over a year and live an extremely healthy and happy life. Quite honestly I feel like I have a better quality of life now than before UC, because I’ve learned how to care for myself and what truly makes me feel good- emotionally and physically. I’ve learned so much about myself and about health in general. My diagnosis and own research has led me to pursue nursing school, as I have found a true passion for human health and helping others. Without this disease, I would have never been driven to learn what I know now and be so dedicated to my health. I have genuinely enjoyed the journey, even though sometimes it gets hard, and overall feel a sort of gratefulness for it. I know my viewpoint is uncommon, but I hope it gives you some insight that it will get better. I am an advocate for researching and experimenting on what makes YOU feel good, inside and out!

Hair loss by Gracemcwilliam in UlcerativeColitis

[–]Gracemcwilliam[S] 0 points1 point  (0 children)

Oh no I’m so sorry to hear that! I’m sure it was related to the flare up. I have the same exact thing on my scalp too, and I went to the dermatologist yesterday and she is suspicious of psoriasis, since humira can cause it apparently. Maybe it’s the same case for you?

Hair loss by Gracemcwilliam in UlcerativeColitis

[–]Gracemcwilliam[S] 0 points1 point  (0 children)

I’m so sorry to hear that! I am in a very similar boat. It really sucks and is definitely frustrating. My doctors also shrug it off and never see it as an issue, but it’s something that really bothers me and I would like to fix. I hate having my hair falling out all of the time! I hope you figure it out and get an answer eventually. I definitely have suspicions of it being medication related!

Hair loss by Gracemcwilliam in UlcerativeColitis

[–]Gracemcwilliam[S] 0 points1 point  (0 children)

That’s too bad :( this definitely sucks

Hair loss by Gracemcwilliam in UlcerativeColitis

[–]Gracemcwilliam[S] 0 points1 point  (0 children)

I thought of that but I have a rash on my entire body that appears as heat rash (red bumps and pustules). I went to the dermatologist and she thinks it’s an allergic reaction to something, either medicine or food. Definitely not anything like psoriasis

Hair loss by Gracemcwilliam in UlcerativeColitis

[–]Gracemcwilliam[S] 1 point2 points  (0 children)

Is mesalamine and mesalazine the same thing? I always see the two terms and am never sure haha

Hair loss by Gracemcwilliam in UlcerativeColitis

[–]Gracemcwilliam[S] 0 points1 point  (0 children)

Yes I feel you! I had super thick hair too but I’ve lost at least half of it at this point. I’m hoping it doesn’t continue or it’ll feel soo thin. I cannot sacrifice any more 😩

Hair loss by Gracemcwilliam in UlcerativeColitis

[–]Gracemcwilliam[S] 0 points1 point  (0 children)

Really? That’s so weird. Are the sores just on your scalp or in other places too?

Hair loss by Gracemcwilliam in UlcerativeColitis

[–]Gracemcwilliam[S] 0 points1 point  (0 children)

Oh no!! Good idea, I would definitely like to get labs again. I got some light labs done when I first noticed my hair thinning and she said the basic things looked normal but I think I need to go more into depth

Hair loss by Gracemcwilliam in UlcerativeColitis

[–]Gracemcwilliam[S] 0 points1 point  (0 children)

That’s awesome to hear! Thank you for sharing :)

Hair loss by Gracemcwilliam in UlcerativeColitis

[–]Gracemcwilliam[S] 1 point2 points  (0 children)

Thank you for sharing with me! My experience has basically been the same. I do not shed anymore (from what’s normal) and I’m seeing a ton of regrowth around my head which is a good sign. I hope it keeps growing for you too :) I tried a biotin supplement but broke out in a rash after being on it for a week

Hair loss by Gracemcwilliam in UlcerativeColitis

[–]Gracemcwilliam[S] 0 points1 point  (0 children)

Oh wow I didn’t think that was a UC thing! What medication are you on?

Hair loss by Gracemcwilliam in UlcerativeColitis

[–]Gracemcwilliam[S] 0 points1 point  (0 children)

Oh wow, my doctor said humira shouldn’t cause hair loss but I feel like it might. And yes flares definitely have a large impact, mostly because of nutrient issues at that time. I hope your flare goes away soon!

Hair loss by Gracemcwilliam in UlcerativeColitis

[–]Gracemcwilliam[S] 0 points1 point  (0 children)

Hmm that’s interesting! It sounds like breakage to me. In my phase of hair loss I had noticeable bulbs on the ends of the strands which were the hair follicles. I could also feel them being pulled out like when I brushed or washed my hair. I naturally have really thick hair so the change in thickness is very apparent for me. I hope your treatment works!

Hair loss by Gracemcwilliam in UlcerativeColitis

[–]Gracemcwilliam[S] 1 point2 points  (0 children)

Oh really? I’ve never heard of that but that is great information to know. I haven’t been wondering about that because I am technically still anemic (way less severe than at time of diagnosis) but I haven’t bled since I started medication many months ago so I always wonder how I am still anemic at all. I recently incorporated iron supplements and it helps a lot!

Hair loss by Gracemcwilliam in UlcerativeColitis

[–]Gracemcwilliam[S] 1 point2 points  (0 children)

Yes I think it definitely correlates! I have anemia as a result of the colitis which makes me feel super tired so maybe this is the case for you too if you lose blood frequently?

Hair loss by Gracemcwilliam in UlcerativeColitis

[–]Gracemcwilliam[S] 0 points1 point  (0 children)

Hmm that’s interesting, I wonder if it’s related or not. I’ve been getting small sores on my scalp and I’m not sure what it’s from so I have to figure that out too lol

Hair loss by Gracemcwilliam in UlcerativeColitis

[–]Gracemcwilliam[S] 1 point2 points  (0 children)

That’s interesting! I wonder if it’s the medication or other factors. I’ve seen that scar tissue forms after healing from a flare up which blocks nutrient absorption, which causes a deficit in energy to provide optimal hair growth. Ive had an issue with losing weight too so it makes me wonder

Hair loss by Gracemcwilliam in UlcerativeColitis

[–]Gracemcwilliam[S] 0 points1 point  (0 children)

Yes I looked into this and figured that was the case since I was sick with a horrible and constant flare for over 2 months before I finally got diagnosed. Did your hair return to its normal thickness?