Community Forum

Have a question, or want to share your own tips and experiences? Join the discussion in the community forum. You must be registered to participate. Our forums are moderated by Crohn's & Colitis Foundation staff to facilitate a safe environment.

In Need Of Some Advice

Mon, September 23, 2019 2:44 PM

Hi everybody, very new to all of this and looking for some advice. I was diagnosed with UC in March 2018 having put off my symptoms for months. I was in hospital for 2 weeks on IV steroids. Once I was allowed home, I started on infliximab. I was on this for just under a year. My symptoms improved marginally, but general day-to-day living was still a challenge. Getting to work in the mornings being the biggest struggle, and also going out socialising for dinners etc. Eating a big meal and trying to keep this down the obvious struggle. I would say my average BMs were between 8-10 times a day. I then went onto adiluminab (humira), for which I have been on again for roughly 6 months. Again, no real change in symptoms. Still around 8-10 BMs a day with very bad urgency. My biggest challenge is the urgency in the mornings - which is why trvelling to work etc is extremely tough. My doctor has advised that infliximab and humira are the two current most effective drugs in treating UC, and the fact I have not responded well to these has left me extremely worried. I now have three options. 1. participate in a trial drug (risankizumab). Has anybody ever been on this? Obviously the risk associated with participating in a trial is slightly daunting. 2. Continue on the next available drug. My concern with this approach is the fact that I haven't responded to inflximab or humira, will I respond to these other drugs? 3. surgery. For me personally, I feel surgery should be the last option, as it is irreversible. How bad should my symptoms be before I consider this option? How bad are others people's symptoms that they are coping with?

Thank you in advance for any help! 

FPO Max93
Joined Sep 23, 2019

Mon, December 23, 2019 12:55 AM

Reply posted for charbs.

I was also looking for some inforamtion about Anxiety as one of my close friend is suffering from anexity and I want to help him.

FPO claudialaver
Joined Dec 19, 2019

Mon, November 11, 2019 12:16 PM

Reply posted for Max93.

Hi I'm the same mornings are worse for me especially if I don't have a bm before bed . Do you drink coffee in the morning? ? I've just come off steroids and injections becuase they were making me worse so I found out so currantly not taking anything I'm trying to do it through diet trying elimination diet and trying to stop drinking coffee as well Hope you figure it out :)

FPO mixy11
Joined Nov 5, 2018

Sat, November 09, 2019 11:50 PM

Reply posted for Max93.

I have Chron's disease which is slightly different. Instead of the 8-10 BM's, I am lucky to get even 2 BM's as one already seems difficult. I suffer from constipation due to a reoccurring constriction, or obstruction of my small intestine. I've been on Remicade (inflixmib) since April this year. Not really doing justice for me as the abdominal cramps and random noises and unwanted gurgling of the gut occurs at least once a day now. At least you are able to go to work, I had to give that up completely. I've been in and out of the ER and hospitalized more than 8 times this year that I know almost every nurse's name in med-surge. It's horrible. My GI gave up on me even after he had doubled my dosing on Remicade. That was like the Golden theraputical choice for him and now I'm being tossed into another GI's hands. Won't know if they will set me up on another med (Humira?), or just surgically removed the part that keeps blocking the pathway. I also feel that surgery should be last option because not only is it irreversible, but there's a chance that you may need more than one surgery to remove all of the parts that are causing your issues. I already had one surgery to remove an actual mass obstruction and the appendix, which in my opinion led to my developing the Chron's disease a month later, and the recovery was not fun. Had a bit pain walking first week after the procedure, plus they insert a small jp drain pouch which you have to empty until they take the pouch out like 3 weeks after the surgery. Had to cover the area when showering. Just a lot of things involved even after the surgery was over.

FPO Konichiwa
Joined Nov 9, 2019

Wed, October 23, 2019 5:41 PM

Reply posted for Max93.

I completely understand and this is what I have for you. I am 29, dignosed for 15 years, tried all FDA approved meds, never been in remission. 1. Trial drug Q: I agreed to do a trial last fall finding myself in the same situation as yourself, so I came off all meds and started the trial. WORST MISTAKE EVER.I thought I was sick before...I had a flare this time last year and have been extremely sick ever since. The people running the trial whom I  dealt with on the day to day made me feel like a was just a number to them - for some quota they had. What eventually ended up happening was an emergerncy hospital stay - doctors had to hit me hard with a large amount of steroids - which in turn kicked me off of the study and I pretty much was just left SOL. I now do not trust drug companies at all - case in point, do ALL of your own research on whatever option you're thinking about going with. 2. Try another approved drug Q: well, I have tried all of them so I guess at least I am confident that I did and am doing everything in my power to circumvent surgery and have a higher quality of life. I have known people that have been put into remission on Humira and Remicade. Though I have tried Remicade twice, Entyvio twice, Imuran w/ sulfasalazine, Cimzia, Stelara, Humira, not Tsabri - b/c tested pos. for possible brain issue it can create. I find that most biologics have the same or similar side effects for me...I feel like if you try 1, might as well go through the bunch. It is frustrating but there is at least some hope at that point...I do not know really what I am left with at this point lol 3. Surgery Q: I completely agree with your thoughts on surgery...I had a resection of my ileum back in 08 but none since. My new GI has sent me to an IBD specialist who just recently told me I cannot put off surgery anymore. That being said, I would try every medication I could and every treatment option such as I am currently on TPN - NPO for 3 months to rest my bowels - because you don't want to be forced into surgery or have an emergent situation.

FPO BehindTheMask
Joined Oct 23, 2019

Tue, September 24, 2019 5:59 PM

Reply posted for Max93.

I had severe UC and nothing worked for me except prednisone.  Prednisone is not a long  term solution. I finally got sick and tired of being sick and tired. I was having to get monthly blood transfusions with no end in sight. I got the surgery ,two, actually,  and it’s a big deal with a long recovery.  I was pretty happy with things till I developed Crohn’s disease. Tried remicade, and now entyvio and neither seems to do anything for me.  Maybe the next med will work for you, some do, some don't.

FPO charbs
Joined Oct 31, 2016

Related Topics

buying food @ resturants ...
Author Image evvy1010
Joined Aug 24, 2019

So when me and my family travel we like to stop an....

read more

What does remission look ...
Author Image r3bags
Joined Dec 9, 2008

I've had a diagnosis of Crohn's disease since I wa....

read more

Tips dealing with Drain
Author Image jdliving
Joined Apr 16, 2020

Does anyone have any tips in dealing with their dr....

read more