I'm officially hopeless

I need to vent.

I have been flaring for 8 months. A 5 inch mild patch of inflammation that will not just not go away. I've done EVERYTHING. 3 double doses of remicade, uceris, enemas, a 40 mg taper. EVERYTHING. And it just won't stop. A uti and other female issues along the way kicked the flare back into gear because of antibiotics and made things worse again. Then c diff. Then a colonoscopy.

I was doing really well on the pred taper til I hit 10 mg and my period on its way and the past few days I have some mucus and today a tiny bit of blood on the tp.

I honestly don't know what to do anymore. I am so emotionally exhausted from the ups and downs. I am definitely in a state of depression. I can't handle it anymore. I've just lost hope.

I see my GI Tuesday. I don't even know what to say to him. I don't even know what he can offer to help. My next infusion is in 3 weeks. I keep hoping once my period comes things will calm down again.

My symptoms aren't crazy. Only going 1-3 times and they are formed but the mucus and now blood have thrown my head into a tail spin. Like here we go again. I can't talk about this with my family anymore. They just don't get it. And I'm sure they are soooo tired of hearing it. I feel absolutely helpless.

Thanks Kevin. At my worst I was going 25+ times a day passing just blood and mucus. That's what I fear every day.

I eat pretty healthy. Bananas, greek yogurt, eggs, chicken, fish, white pasta with oil, pretzels. I allow myself one cookie a day because I need something. My diet doesn't seem to play a role in my symptoms.

How awful for you. I can imagine how draining it must be to feel like nothing is working, and things are just spiralling out of control. At this point, I think I would try tweaking your diet and trying some supplements as you have nothing to lose!! Until relatively recently I didn't believe that diet played a role with my UC, but I have found out differently. I honestly don't believe that it did for me at FIRST, but, what I have come to realise is that with UC nothing stays the same, it is a complex and frustrating condition which changes and evolves over time, making it difficult for people to pinpoint any related pattern or symptoms.

about supplements, I think you could try Grape Seed Extract, I take this and have been surprised at the difference it has made. Also Powdered psyllium seed....it bulks up your stool, which helps a lot, and finally Curcumin, it is well known to help with inflammation, I would try that as well, in fact, why not try them all!

With regard to diet, I believe that everyone is soo different that whatever advice I give probably won't work for you, and yet, I do think that in your shoes I would probably try cutting out dairy for a while and see if anything happens, you should know pretty quickly if that impacts your UC or not.

Thanks guys. I don't use dairy products...never have even pre-UC. The greek yogurt is the only thing I have and I eat that for protein. I added that back in slowly and it doesn't seem to have any affect. I used to do psyllium and switched to Benefiber when I was pregnant because it was easier to get down with my big belly and smooshed stomach lol. My stools are formed at this point.

I have tried FODMAPS. Somethings on the no list I'm ok with and some things on the yes list really upset my stomach. I do know with this flare what I can and can't eat while flaring has changed. For instance I can no longer tolerate tomatoes in any form. Which is awful because I looooove pasta and red sauce.

I do have curcumin in my cabinet and have been reluctant to add it in. It's the one with bioperine in it and I'm scared the pepper will worsen things.

@nssg - what do you mean that "you may be having normal symptoms from the lower dose of prednisone and it may clear up before you know it"? This gives me some hope but I'm unsure how this works with pred? Can you elaborate. Yes I am still on 2 packets a day of VSL. And one florastor daily - left over from the c diff when I was on vanco.

I appreciate all of your support. It really means a lot.

Is there really a chance I could be healing? I have never healed like this. Blood was usually the first symptom to go. This flare its the one that keeps coming and going, coming and going.

I don't have any urgency really...maybe a little with the first but I always assumed that was the enema. The 2nd or 3rd is just normal.

@siren - No I am not on BC. I think hormones play a role in my disease so I don't think that trying BC will have good results for me. Its unfortunate because at least then I could know when my period was coming. I am 11 months post partum and getting my 4th period and things are still semi irregular :(

Thats the plan at this point. My GI said I could bump up to 15 mg thru my period than taper again if I needed. I am going to see how tomorrow goes. I was completely fine on 15 but I was also not getting my period.

I called my GYN to discuss the mini pill to see if its an option. I see my GI Tuesday and will discuss with him then too.

I tried a Rowasa last night. I had the same issues. Cramping and upset stomach all morning with wicked gas. I just can't handle something in it I guess.

Back to steroid enemas....I just can't believe how incredibly defeated I feel. I feel like I've been fighting a losig battle for over a year.

Post Edited (TotesMagotes) : 2/18/2016 3:37:05 PM (GMT-7)

Yes I would quit dairy And stop taking vits. Vitimins really did me in.

Good luck xoxo

Ok totes! Thx for the note!

But just for a few days? Pretty pls try?

Yoplait makes really good lactose free and one called Green Vally is organic and to die for!

It seems to me the Remicade is working. You just need to get over this last bump caused by those interruptions. Hopefully the 3/11 infusion will do it. I would have been ecstatic if Remicade got me down to that low number of bm's. When I was on it I still went 20+ times a day. Good luck!

I'm not sure what bv stands for but I'm battling consistent uti since October last year. I was prescribed Bactrim and cipro which I refused to take because I'm in remission and didn't want to jeopardize it. That's not necessarily a course of action I recommend to anyone. But instead I used Cranberry to get rid of the uti. I have my anti biotics ready just in case but my last urine sample came back clear and that's all I can ask for. I'm on a preventative dosage for Cranberry pills so it doesn't come back.

I'm sorry you're dealing will all this and I hope your appointment will bring you some hope back. Are you on anything for depression? Also maybe you need your infusions every 6 instead of 7 weeks? I had to do that when I was on remicade. Well these are just ideas. I wish you you get better very soon.

Totes, BOTH! 👍😛 why not? Give it a few days, stranger things... Right! Cant hurt.

Sending you hugs! Sorry you are still struggling, hang in there!

Thanks so much for all of the support :)

@Andrina - that's exactly what I am doing now with uti stuff. I drink a glass of cranberry juice each day and take d-mannose with cranberry to keep things flushed. I am not on an antidepressant yet but my GI did prescribe Wellbutrin 150 mg. I was waiting to be off steroids to start it so I could see where my head was really at. I see you take it. How are you doing on it? Any side effects? And yes when I meet my with my GI next week I am going to discuss pushing the infusions up to 6 weeks.

@lonesurvivor - I have had a surgery consultation and am very open to it. The issue is - is it worth removing my entire colon (right now) for 5 inches of mild inflammation?? It's like the worst scenario. Even the surgeon said I was being "cavalier". Needless to say I would never go back to him and would find someone else but it's like a catch 22 at this point.

@dutchess - when I was first diagnosed I went gluten free for a month and it didn't change anything. I also did an elimination diet. At this point my food intake is trial and error. Sucks!!

@kkids - I am sooooo sorry to hear you're in the hospital. I really hope you get a break and can get the gyn issue resolved so you can start healing the colon. Did they give you any options that could help get the gyn issue fixed while you're in the hospital?