It's never going to stop

Hello guys, I haven't been on this forum in a while. But I need help. I don't know what to do anymore. I've been on prednisone for too long, but it's the only thing that would help me. I had to stay on it during my high school year because if I kept tapering off it, I would flare. My doctor wanted me off it as soon as possible since I've been taking it long term and yes, it has caused harm to my body (mostly stretch marks) which are unbelievable visible. I started simponi when school ended. I think I've taken 6 or 7 shots so far, and at first I thought it was working because I was able to get to 7.5 mg of prednisone and I didn't flare. I've started college and it's possibly the most unpleasant experience of my life. When it started, I was having incontinance issues and Imodium stopped working for me, I used to take it and it would help but not this time. My doctor gave me medication for irritable vowel syndrome and diarrhea( since I have both) the ibs medicine is hyoscyamine ER 0.375 tab which I take once at night and the other is lomotil which I can take up to 8 a day but 4 usually do what it's supposed to. I'm on a lot of medicine and nothing seems to work. I'm only 19, I don't wanna get surgery but Everytime I see blood I just cry. It's not impacting me but it's impacting my family. And I don't want to drop out of college either because of this stupid illness that's controlling my life. The current medication I'm taking is prednisone 10 mg. SULFAZALAZINE 8 tablets a day, lomotil, and the hyoscyamine tablet. I also take either hydrocortisone suppositories or enemas at night because I told my doctor I'm bleeding but it's not helping. Also I switched from mesalamine to sulfa because I was still bleeding on mesalamine. Someone.... Please... Help me

I was able to tolerate it when I didn't have school. I just stayed home all day during summer, that's what I meant by that. Also I forgot to mention my doctor said I have a fatty liver so I don't know if he would give me imuran. I don't think I've tried it either. I even went to see a therapist during the summer thinking maybe that would help me clear my thoughts but no. I just don't know what to do anymore. I only feel good when I'm on prednisone. As much as I hate having the moon face, stretch marks, bone pain, etc it's the only thing which would make me feel "normal". But I don even know what feeling normal is anymore. I've just gone through so much I don't know what to do anymore.

I know you say you don't want surgery, but I'd at least consult a surgeon if I were in your shoes. Look at it as taking your life back.

garylouisville said...
Don't have much advice except to critique some things you are currently on. Since you are making this post and in a bad state, are you sure CCHerbal and your probiotics are actually doing anything? I wouldn't take either unless you are 100% positive they are helping in some way. Some of these things can make you worse. Most all UC'rs are helped by some probiotics but what makes one better makes another worse. Have you tried VSL#3 yet? It has the most studies in regard to helping UC. How many CFU's does your probiotic have? What about diet changes? What country are you in?

I'm not taking the ccherbal anymore. My signature is old from over a year ago, the current meds that I'm taking are in the original post. I've tried Vsl before, just made me gassy. I still take the probiotics in my signature. And diet changes... I've tried that and it didn't make a difference. I've noticed from my last two stools this morning, the stools come out without blood but at the end that's when the blood starts coming out. I don't know how to explain it any better.... I only have pain in my rectum area. However all rectum medicines I've tried haven't helped. Hydrocortisone or mesalamine. However I had propolis suppositories and it did help... Temporarily. And I'm in the United States (New York)

imagardener2 said...
I'm sorry you are having a rough time, many of us have gone through the same and it is a challenge to find what works to relieve the symptoms.

I have 2 suggestions to try getting you off the pred which is super important to do:

1. Ask for (and use) a melamine enema nightly. These are very effective, better than pills, because they go right to the area that needs it. You will hate it at first until it starts working and then you'll kinda get used to doing it before bedtime. If you find that you are still sensitive ask for the Rowasa SF which is sulfa free.

2. Start trying eliminating foods that may be part of the problem. Eliminate gluten/bread/wheat for 30 days. Don't replace it with "gluten-free" bread just eat food without bread, pastry, etc. If you see a bit of difference at any time you know you're on the right track and can then start finding other foods that can irritate. Dairy would also be a good choice to eliminate.

Nothing is more important than your health and if you have to take some time off school or reduce your classes you should put your health first and do that. Perhaps you can do internet classes? I would not stay home however, get out and about for exercise and mental health. Just reduce the stress of being afraid of accidents while getting better.

If all else fails don't be afraid of surgery, people who've posted here say it was the best thing they did.
But give everything else a good try before that time. But get off prednisone as soon as you can.

Best wishes

Sadly my college doesn't offer online classes I think. I've tried the no bread suggestion before, didn't do a thing with me :(

I know little about the surgical options and outcomes, but I've hear many users on the forum say they don't regret the surgery and wish they had done it sooner. Just something to consider if you are at the end of your rope.

well, I think that's a great option, but why was he not on board with the cortifoam ?

I empathize, young friend; having band aided my daughter for 3 yrs of HS and 3 yrs till she graduated college.
Was Simponi your first biologic? Did the doc speak to you of Entyvio,or is the liver issue preventing it? We did get a semester out of Tacrolimious, but we knew we were at the doorstep of surgery. It is not as highly recommended as a few other options you have.
De stressing yourself sounds difficult, but consider dropping a morning class.Please involve every professor. Amaze them that you can do some stuff early, so that when you are late, they will understand it is your illness and not you.
Have they given you exact medical info...is it UC as diagnosed by colonoscopy? Where is your inflammation and is your blood work reasonable? GI at a good NY teaching hospital or some such?
I know that Pred is not your answer, so you must keep seeking. Diet changes might be ineffective at this juncture. Keep posting when you can. Things will get better.

Katmom said...
I empathize, young friend; having band aided my daughter for 3 yrs of HS and 3 yrs till she graduated college.
Was Simponi your first biologic? Did the doc speak to you of Entyvio,or is the liver issue preventing it? We did get a semester out of Tacrolimious, but we knew we were at the doorstep of surgery. It is not as highly recommended as a few other options you have.
De stressing yourself sounds difficult, but consider dropping a morning class.Please involve every professor. Amaze them that you can do some stuff early, so that when you are late, they will understand it is your illness and not you.
Have they given you exact medical info...is it UC as diagnosed by colonoscopy? Where is your inflammation and is your blood work reasonable? GI at a good NY teaching hospital or some such?
I know that Pred is not your answer, so you must keep seeking. Diet changes might be ineffective at this juncture. Keep posting when you can. Things will get better.

Simponi was not my first biologic, remicade was and I had a different hi doctor at that time, it seemed to work at first and then it seemed to stop. The special remicade test showed it was 100% and he couldn't increase the dose any more. No I've never heard of that medicine. Yes it was diagnosed by colonoscopy, it was pancolitis at first I believe... Now it's severe ulcerative colitis according to my doctor. Not sure where inflammation is haven't had a colonoscopy done in a while, and my blood work is normal. Except my white cell count is too high I believe.