Feeling completely defeated

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Manzyb

Manzyb

Joined
Nov 5, 2009
Messages
1,415
I have now had 2 Tysabri infusions and I am just not feeling well at all.
Yesterday I had 26 trips to the bathroom, and today I was down to around 15ish. Freaking threw up again tonight too. My belly has been feeling so distended and sore every time I eat anything. It sounds like a darn broken pipe in there! My doc had just built the Tysabri up so much and was sure that with the surgery I had and this drug it would put me into remission. I know it's still "early days" in the new medicine, but when does it end?

I feel a bit bad because before the surgery I was a lot worse off, but is it really too much to ask to just feel even mediocre? I'd settle for that right now!

I know I don't have it nearly as bad right now as some of you guys, but I'm feeling a bit hopeless. I've tried every other Crohn's med out there right now, and I'm not sure where we'll go from here if Tysabri doesn't start helping me.

Thanks for reading this! I just needed to get this out for a minute. I'm so sick of this stupid disease and just want nothing more than to feel well and be able to really enjoy the time with my little baby.
 
No its not too much to ask. Perfectly reasonable, if not asking enough if you ask me. One thing to be thankful for is that things are passing through. That's VERY important. I totally agree, this disease is stupid. You're doing good, keep doing what you're doing to try and get healthy. Don't let this stupid disease beat you. That little pink cake filled teddy bear needs you. :)
 
Oh hun. When it gets this bad,you can only do one day at a time. And hope that tomorrow brings some relief. Have you rung the GI office to let them know how you are feeling? Did they tell you how long it would take for the drug to give you some sign of improvement?

I wish with all my heart that today is a better day for you. :heart:
 
I am so sorry you are feeling like this.

I will hope & pray that you get some relief soon.

Sending a big hug your way in the meantime.:ghug:
 
Misty, they told me it could take up to 3 months. It's only been 6 weeks, so far, i'm trying to stay positive about it! I just remmeber when I started Humira and Remicade i felt better immediately. I put in a call this morning to the GI doc, so we'll see what they say. They did call me the other day because my hemoglobin had dropped a lot since my last test and asked if I was bleeding.

I am very grateful that things are still moving through! It just sucks that my backside hurts so bad that it hurts to sit down or even walk, and i'm just exhausted.
 
Hi Amanda-

I am so sorry your feeling this way. Its a lot like how I have been, and it sucks bad. Is there any chance you have the c- diff. infection? A lot of the same symptoms of acute flare seem to mirror those of c-diff., which we crohnie's are susceptible to, especially after antiobiotics for other stuff. When you were in the hospital, you could have picked it up, or if you had antibiotics, you could have had it flourish in your gut. Its worth getting a sample tested- its bad news if unchecked. I am mentioning this b/c I am in the hospital now with the same basic symptoms and I tested + for C. DIFF.

Anyway- I hope you feel better very soon.:ysmile:
 
Manzyb,
Be strong. Be patient. Focus on the progress (even though its slight...it is present). Manifest Destiny ---don't stress, stress will strengthen the flare. There will come a day that what we are going through will a distant memory, just remain positive for the next couple of months and allow the Tysabri to work. I know your exhausted so "lean" on us on the forum when you have a tough day. You calmed my fears and in return I'm here for you. Pm me if you ever need to.
 
So sorry you are feeling unwell. It must be hard looking after your little miss when you are rushing to the bathroom all the time.
I really hope that the tysabri works for you- from what I've read it is unusual to work really quickly. For humira I was told improvements from about 6-8 weeks.
Sadie will aspire to be a marathon runner after watching all that running. ;-))

Try to keep smiling, enjoy the little things and I'll send a couple of big smiles over the water to you!
 
Thank you all :)

I was tested for C-diff back in February and was negative for it. I may have them to check me for it again though, just to be sure.

Today was a better day. I was off of work and still not feeling the best, but not quite as bad. My mom took off work and came to hang with me and the baby for the day. Why is it that no matter how I old I get my mom still makes things better?

Thank you again for the support. It really does help just venting and have people that actually understand what you're going through.
 
Oh Amanda, it breaks my heart to read that you are feeling this way. :(:(:(

I hope more than anything that the Tysabri is taking its sweet time to kick in and you will soon be feeling on top of things again. Goodness me, it's exhausting enough running around after a little one let alone having to deal with Crohn's and surgery as well. Kudos to you Mum for doing as well as you are!

Awww, she is your Mum hun and it is exactly the same way Sadie Bear feels when she is tired and cranky after a long day and she climbs up on the lounge and snuggles with her own Mum, falling gently off to sleep...the bond is never broken. :hug:

Much love, :heart:
Dusty. xxx
 
Thanks Dusty for the kind words :)

One of these days I'm seriously determined to be WELL! The last few weeks I've been trying to get back to the gym and have been eating really healthy and all. Some days it works for me, other days not so much. The last couple of days though, no way I have the energy after chasing Sades around!

By the way, I love the picture of Roo and Matt you have up!
 
Doing alright so far this morning. A bit crampy, but nothing compared to the last few days! I've been working long 10 hour days the last couple of days. Yesterday whooped my butt, and I went to bed at 9:30! I got some good rest and feel ok. Working on eating a plain waffle to get some stuff in my belly.


Thanks for asking :)
 
Oh hunni.
I am so sorry you have been feeling crappy.
Wish there was something I could do to take it all away.
I can only send you and sadie bear lovely gentle squishy hugs
Xxxxxxxxxxxxx
 
thanks Shazz and mindy :) Today hasn't been too bad! I haven't eaten much, mostly just drank water and had some crackers throughout the day. I've only been running to the bathroom about 5ish times! Way better than Sunday. I felt horrible! I couldn't hardly sit anymore after going that many times.
 
Well, I haven't been going over 20 times a day, but still between 10-15. :( It sucks. When I eat I get bad pain and then am in the bathroom within a few minutes after my first bite. I have another Tysabri infusion on 5/15, but I have to tell you, I'm losing faith! I figured I would have felt somewhat better by now.

Oh well, I guess. 12 years not getting into remission, I guess I shouldn't count on it now. i'm just really sad and frustrated.

Has anyone done home-made smoothies as meal replacements? I can't do ensure or things like that, it makes me so nauseas to try and drink them! I was thinking of doing smoothies and buying a flavorless protein powder to mix in for some extra protein. I've got to mix things up and try something different. I've been eating really healthy to no avail. I think its time for liquid diet again.
 
I've just ordered an attachment for my Kenwood so I can juice and do smoothies myself. So, I shall report!

I am so sorry this drug isnt working. What are they going to do next? (or dare I ask?)
 
Sounds good Misty. Let us know how it goes.

Manzy I am so so so sorry you still are not right. Been waving my magic wand as well but it must be broken. Xxxxxxxxxxxxx
 
I've been feeling so crappy in and out of the hospital so much getting transfusions and antiviotics for other infections. I called my son who has been working out of state...... crying my eyes out in the middle of the night cause of the pain and doctors bad news and all. Anyway I just wanted you to know that you will make it thru this and all the ups and downs of this disease cause you are very strong at heart.. And having your little one is gping to bring so much love in your life to help you as time goes by. Even though my son is grown now I don't know how I would have gotten thru some bad times. ..... he ended up sleeping in my hospital room for a few days this week. I love this kid.
 
Geez, Manzy. That sounds horrible. Here I am complaining about still going 5-8 times a day despite Remicade and you've had surgery, taking Tysabri and still going that much?? I'm so sorry you're dealing with that. Can they add imuran?
 
Hey Manzy how long ago did you have your resection? After I had my resection it took some time for my guts to settle down.I started Humira, and Loperimide and Welchol. Finally, after about a year, it became mostly normal. I really think it takes time for the gut to heal from the surgery.
 
Hey Amanda...:hug::hug::hug:

I agree with looking into something for the chronic diarrhoea. There is what Doug has suggested or Questran or you could go down the path that Sarah and Matt have...psyllium husks. Bringing that under control really does make a significant to your day to day functioning.

Sarah does juicing as a supplement to her diet but that is with tolerating a vegan diet. Have you ever considered naso gastric feeds? I know it probably sounds out of left field and a bit crazy maybe??? :lol: Seriously though if you went that way you would be getting all of your nutritional needs so it eliminates the worry of diet, it generally eliminates the pain associated with eating and it rests the bowel. You could have the feeds overnight via a pump and just insert the tube each night. It also has very good results at inducing remission, more so as a first time treatment but coupled with the Tysabri it may just do the trick???

Dusty. :Karl:
 
I am taking about 5 psyllium husk capsules a day, Dusty! i feel like i am doing something wrong b/c i take them and am still going. I'll talk to doc and see what he thinks about doing ng feedings. It may do the trick!

They say it takes a couple of months for the tysabri to work. i've read some people feel better immediately and others don't. i am only allowed to have 2 more infusions, after that, if things have not improved i will have to stop taking it.

Not sure what to try next. i've taken everything so far and have failed. I can't take imuran b/c it gave me pancreatitis a long time ago. I can always try it again, maybe?
 
We don't use the capsules here so I don't know if that makes a difference. We use the powdered like form of psyllium. Maybe switch to that and see if it makes a difference?

I don't think they will prescribe Imuran again if you developed pancreatitis last time. Did you ever try the other immunosuppressant, Methotrexate?

Dusty. xxx
 
Ooooh.. i will see if they have the powdered form, maybe that will make a difference? I'll try it.

I had. I took methotrexate for about 2 years back when i was first diagnosed.
 
I'm kind of chuckling about mentioning this, but thought to bring it up since, you are probably looking for ideas, and it is something I'm doing now and having some success with. If you find that powdered psyllium helps over the gelatin capsule psyllium, keep in mind that possibly it is the gelatin that causes your gut moodiness.

I have a long ways to go I figure with this experiment, it might work in the end, might not, but of late I've been avoiding gelatin, and for a good long while avoided beef and pork. (Gelatin is made from either pork or beef. I'm back to experimenting with eating beef. Pork does not seem to agree with me, either because of the high fat content or other reasons.) As a result of these avoidances, a little over a month, my gut feels much better, and has performed, well, magnificently. Hoping I didn't jinx myself with that statement!

Good luck, hope you calm the moody gut down soon!
 
Manzyb,
I have no words...I'm following this thread as if I was in your shoes...As you know I exhausted all other alternatives (including surgery) and GI says Tysabri is my last chance before a permanent "bag". Your in my prayers. I really hope you start to feel some improvment soon.
 
Thanks Curtis! I'm trying not to give up too soon. They did say it could take a few months to start working, so I'm still trying to hold out hope. It just feels wrong that after going through that surgery and everything that I still am feeling bad. Oh well! Starting my liquid diet tomorrow for a bit and maybe that will help calm things down too.

Do you know when you'll be starting the Tysabri?
 
Hope the liquid diet helps you until the meds kick in hun.
Thinking of you and Sadie bear, as always. Xxxxxxxxxxxxx
 
Short answer - NO!!
Still bleeding.
Going to put a new post up now about it.
Xxxxxxxxxxxxx
 
hi manzy,
sorry not posted on here for a bit. I hope that the liquid diet makes you feel a little better.
:))
 

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