Anyone else experiencing hair loss with immune suppressants

I was diagnosed Nov 2015 but had proctitus and suspected IBS since Jan 2014 ended up in hospital November with pain and dehydration suspected perforated bowel they did the scope thing and determined I had left sided colitis like my brother.

I suspected it had spread and turned into colitis but no one listened even when I went to doctors 3 times in 2 weeks crying in pain losing blood for months barely able to walk into surgery they put it down to me having a bad flare up of proctitus and IBS and sent me home with anti sickness pills lol and to take paraceptoml and ibuspan.

I ended up crawling in to a&e the next day and was instantly admitted for 2 weeks.

I've been on Steriods starting at 8tablets reducing by one weekly since November to January been off them 2 weeks even though my face now looks like I have no jawline so feel and look like a man as hair on face seems to be growing in lovely non Feminine places making me feel even more down.

I had 3 rounds of infliximab last one beginning of January this year and started getting heavy chest sweats and they out it down to side effects from this sonstoppedbit but I still get it on immune suppressants but anxiety tablets help reduce the heavy chest feeling like I'm havin a heart attack which they now have put down to panic attacks but I'm not sure this is correct as I've had more stresses in my life past 6 years then getting ill and I didn't crack up then so why now colitis is under control and life is good and calm am I feeling constantly anxious on edge and scared all the time.

i almost crashed on m25 with kids in car as almost passed out having a so called panic attack I'm a confident driver always go on motorway never been issue but that one evening I had to fight against my body so not to pass out and kill us all for 25miles I knew if I stopped and pulled over it would take a hold of me and I would never get the strength to get back on and get home so I made decision to work through it ignore it and race home. When I got home I puked up my body starting shaking I was freezing cold heart pounding chest heavy I was so scared I didn't no what was going on. Now this crap I can't live with is it all in my head which iS worse, cause no quick cure for anxiety or is it symptoms for being on this toxic crap that apparently could give me cancer GREAT.

how do I know this over whelping horrible debilitating feeling will go away if I have the surgery???

Hi Samantha

I feel your pain I had UC for 11 years had a bad flare 7 months pregnant which then continued for another 6 months till I had surgery sept 2015, I tried all the drugs /diet you name it .. But nothing was working I am proof and so are other people on here darasdad and Sheila's son and me have had surgery i have no regrets as I have my life back!! With children you need your strength I was a prisoner in my own home going up to 20 times per day not enjoying my baby to the full as I was an absolute nervous wreck couldn't do anything or if I did I would have accidents !! I feel for you on your car journey been there too many times .. Surgery is so scary but it's the mind once you have done it the body will adapt better than you can imagine my stoma is my friend as it saved my life and in time I will have the j pouch and reversal but I cannot tell you how much better you will feel after I hope something will work for you and you don't have to go down that road but if you do then it's gonna be ok too .. X

Hi I also was a really condfident person before it got real bad and then I would suffer anxiety all the time I think for me it was in my head and the drugs combo of both its completely normal to feel the way you are .. But it's tiring nightmare and I used to cry every day saying when will this end or stop it does horrible things to u get a 2nd opinion they will know by a colonscopy of how bad things are.

Hi Samantha, I am so sorry for you, this disease is sh*t in body and mind. So many scary symptoms and so many scary medicines that can make you feel worse than the disease itself, short term and long term. As Rachelle says sometimes you need to take it into your own hands and make a decision that gets you back in control of your life. One of the best treatments for cancer is to cut it out and throw it away. Same for this depressing and horrid disease when it gets severe. My son was told it is a last resort to go for surgery but it turned out for him to be a good result as well as literally a life saver. He has no regrets, he gave the medicines a good go but they didn't work for him. The colon was removed and only the stump retained. He coped very well with the stoma for 18 months and then had the reversal to a j pouch because he could. He has never looked back, he is fully fit and active and in control. I repeat this to myself most days, he is back to normal, a new normal with a scar or 2 but disease and drug free and that is important, he hopes to live like this for another 60 years! we are so grateful for the surgeons' skills that got him back to where he is now. He did say the other day after only 6 months of the pouch that he has actually forgotten what it was like with a stoma! but he knows it was 100 times better than with the disease. He had minor symptoms from the stump and took Asacol to reduce them until they removed it at the first reversal surgery. Some UC sufferers cope with the symptoms and meds and I'm glad for them but not everyone's disease can be controlled.

I know I've said it before but everyone be aware of DVT and its risks, IBD sufferers are more prone than others because of stickier blood, potential immobility and surgery. 

Good luck to all, thanks for sharing.

Sheila.  

Hi Sheila

You message has really touched my heart what a wonderful mother you are be proud!!

Thanks for all your support and advice it means more than you know.. Do you mind me asking how long your son waited from the first op to j pouch and then reversal as you mention 18 months was it even to spread it out like 9 months then next op? X

Hi Rachelle, lovely to hear from you, sending you the best of luck. Rob had the complication of developing a massive DVT post ileostomy because of hospital negligence which put his recovery back unfortunately. He was told by the wonderful John radcliffe GI team that he would be approx 1 year post ileostomy before they did the reversal to allow his body to heal fully and so he could get fit, put on weight and so that all the immuno suppressants would be long gone. They operated in the original scar to make the stapled pouch and removed the stump and mucous fistula and neatened up the scar below navel. The keyhole surgery to join up was 6 months later when they knew that the pouch was water tight. Quick recovery and back to sport. That was last july and he is a picture of health, swimming and hitting the gym and with a new 6 pack if a little crooked. Confidence returned.

The good guys at Guy's & St Thomas hospital have operated on his DVT damaged vein in his leg and fitted 3 stents to open up and support his circulation in a new treatment that is on trial. Going well so far. We feel blessed. Onwards and upwards!!

Sheila.

Thank you Sheila sounds like Rob has been on a long journey but so happy for you all that he's back to how he should be as a young man enjoying sport and life !! Glad guys and st Thomas have helped my gastroenterologist is there fab doc too !! Small world hey all the best X

Have you decided where you are going for the reversal? Some decisions are easier for girlies than boys as my son had to be advised about the tiny but possible compliction below the waist of the reversal and possible nerve damage. Luckily all was OK. 

Small world indeed, thank goodness for the internet, we found the treatment ourselves as GP and Hosp hadn't a clue. I spread the word as loads of people are affected. The last 2 years and 2 months have been eventful. 

Sheila. x

I will be having it at the uclh in London as for girls it reduces fertility by 30% so they have asked me to hold off if I want more children which I do so we will see what happens over the year X

Yes I know what you mean you have to do your homework with this lucky for the Internet never would of found some of you lovely knowledgeable people X