First Hospitalization and Intense Biologics

So, here I lay in the hospital bed, using very expensive wifi trying to distract myself from what has happened to me over the last week. In a word: scary.

I've had symptoms of uc for probably a decade, but I also struggle with morbid obesity and many of the years that I was running to the washroom with urgen, bloody poops I attributed to eating a really really poor diet of fast food, junk food and huge portions. I don't know if there is a correlation between 35 years of the SAD any my illness but I was oblivious of what uc was until I started to see blood in my stools and was dx'd about four years ago.

When I was first diagnosed I didn't take the recommended mess. I was scared, in denial of how severe I was and thought that I would be able to mitigate symptoms through dietary changes ( although I never really changed my diet much at the time...sigh...) they put me on 6 x 800mg of asacol and sent me on my way and it seemed to help a little but I continued to have bloody poops and massive urgency.

Almost two years ago exactly, I was having a chat across from my husband when I got a severe, debilitating pain in my upper right side to such an extent that I blacked out and he had to call the ambulance. I had an emergency colonoscopy, was dx'd with mild to moderate ulcerative pan colitis and put on a descending dose of prednisone. I gained 35 pounds in 10 weeks, was massively irritable and moody and just generally grumpy. But I went into remission and again focused on diet to try to keep me in remission. It was difficult to stick to aip, scd and fodmaps and I found myself falling into my old, poor eating habits and emotional eating, basically eating whatever I wanted, fast food, junk food and all.

I was flaring off and on for the next year and a half and as with every January first, as a fat person, I made a resolution to finally get my health in order, to lose weight and eat healthy. We switched to mainly a gluten free Paleolithic style diet with some grains...and my symptoms flared horribly. I was losing a lot of weight and I thought it was because if the diet changes and I was happy that I had lost 25 pounds in 4 months. I was in denial but I refused to admit that I was sick and sick enough to require mess or hospitalization.

My gi doc moved to a new hospital about a year ago and I was waiting to be reassigned to a new doc. I got an appointment and was excited to see them because my this point I was having upwards of 30 bloody poops a day. (I know, I should have went to emerg.) I had blood tests done the week before the appointment and a stool test which had no poop only blood and mucus.

When I met with my new doc she was amazed that I worked full time and had a family and was able to do all of that with virtually no iron in my body. I was immediately ordered a colonoscopy and after admitted right into the hospital. This is where it gets scary for me...

They did four bags of iron sucrose, and I've already had four bags of remicade. They are also putting me on imuran and I'm continuing with the asacol. The scary thing for me is not just that this is essentially chemo but that they said I will be on it forever. I have also been self administering cortisol enemies and salofalk enemas once per day.

I've been able to get up and move around and I've been spending a lot of time in the chapel, meditating, welcoming positive energy and repeating my mantras...

Every day in every way I'm getting stronger and stronger
I breath in wellness and breathe out stress
(As I rub circles on my tummy) my mind, body and spirit are healing
I welcoming the healing power of the universe to heal me from the inside out
Everything I eat heals me and nourishes me
I refuse to let negativity impact my health....

It seems to be helping me keep in a positive frame of mind, but I've has some panic attacks and crying fits, too. Just trying to cope with all of this is hard. I'm hoping to be released from the hospital today. I'm praying.

While mesalamines are generally a 1st line med, there is also growing research suggesting the severe cases benefit from aggressive treatment form the start. So, you Remi+Imuran plan is not unreasonable.

It is less caustic than chemo. Many people benefit form Remi for years. With Imuran you should avoid antibodies to Remi, and hopefully it never stops working for you.

If you get a sustained remission, you may be able to space out the Remi a bit, and/or lower the Imuran.

Unless you have a food allergy, or gut microbes so disturbed that you temporarily lose tolerance for some foods, diet will usualy not have any great effect on the UC/inflammation/autoimmune (and associated colon cancer risk). But, it can affect symptoms - which the patient often cares the most about.

Low residue while flaring, means less poop to deal with. You can also try and see if eliminating some hard to digest items like gluten, lactose, casein helps. After you gut microbes get back to a better balance, many can re-introduce these foods.

Some types of fibers produce butyrate fermentation that can help heal the mucosal lining. Some nutrients (like too much sugar) can allow bad bacteria to bloom out of proportion to good bacteria. Some other supplements (on average) help some folks with inflammation, bloating, gas, pain, or other symptoms. You will need to do some personalized research here. Especially read up on probiotics, and see if they help you any (when your flare is more under control).

I would encourage you to eat less processed food and a healthy balance of good fats and protein - BUT don't beat yourself up about what caused your UC. Many things could have been the trigger, and there also has to be underlying genetic susceptibility in most cases.

good luck

It sounds like you have a pretty severe case of uc and that you're still in denial. If you can get your anemia and uc under control then you'll have much more energy and have a much better quality of life. When I had 20+ urgent bms a day I existed but hardly lived, as I was totally miserable and nearly housebound.

I'd suggest you stick with your gastroenterologist recommendations and medications. Be proactive and contact your gastroenterologist with your progress or lack thereof. Diets aren't everyone's solution, as they did absolutely nothing for me.

Chemo is for cancer patients not uc patients. I'm guessing you're referring to a remicade infusion. Remicade isn't given to cancer patients. Different kind of medications.

I am sorry you went through all of that, it is very difficult.

I agree with starting you on remicade and an immunemodulator, the immunemodulator will not only help the UC itself it will also prevent your body from making antibodies to remicade. it takes several weeks-months to kick in but because you are on other therapies that is ok.
key is to avoid steroids like pred as much as possible as you outlined they make crazy side effects and turn some of us (ME) into monsters
there are some steroids that are slightly less effective but are less systemic and mainly absorbed where they are released in teh bowel. the generic is called budesonide for UC, the brand name Uceris is good because it is released in the colon. entecort is released in the small bowel and proximal colon.

like mentioned, minimizing stools can help with symptom management and not with inflammation but can be helpful nonetheless. remember, anything that goes in must come on (well kind of) eating less and eating low residue diet may help.

I am sure they tested you, but I would have stool tests for C. diff/cmv it is common in IBD patients, and in hospitlized patients and hospitalized IBD patients get it often, it is also hard to tell sometimes cuz it can look like a flare

moving around as much as possible is good. not only can it help prevent clots, it can also help you get your strength back. also, maybe ask to see a physical therapist before discharge, I know i had a really hard time when I got home from a long hospitalization cuz i was so weak from not moving, eating and flaring and I was used to being helped. I didnt have an IV pole to "walk" me around. I had to relearn how to go up and down stairs and how to bend down and...


also, technically remicade is chemotherapy- chemo means chemical and therapy is thereapy. it does not cause hair to fall out, or crazy side effects. it will make your immune system weaker so you do need to be extra vigilant with hand washing etc... but aside from that you dont need to think of it as chemo, its really quite different than cancer chemo
good luck, hang in there

So glad you got to go home! Keep up with the exercises and prayers/meditations, they really help. Plus take your "mess"! Best.