Pain for a week

[LadyVik]

:depressed:
Quick background
Diagnosed since 07, no drugs have worked so far, currently on Humira after trying almost everything. No surgeries.

I've been on the Humira now for about 3 months, weekly injections after having an awful flare for 6 months. Got admitted into hospital, had a CT scan and camera etc.., no blockages etc...
So started Humira on a weekly injection, well everything was going great!! Started to have a normal life after 3 years! Started going out, seeing friends I haven't seen for ages and even started dating (I'm only 20, was with my fiance for 5 years but things didn't work out last year so I'm only now getting used to single life!). Well about a month ago I had a sore throat. Didn't think much of it, told my Consultant (I take my Humira myself at home now) and he said to take it. Then I developed a funny nose, it's sort of swollen, but only on the inside, no runny nose or cold symptoms, only thr sore throat. Well last week, I started to go to the loo more frequently than usual, for the last 3 months anyway. Instead on once, it went to about 3 times, then 5 and now to count so far today, it's about 15-20. Their loose and mucusy and unnormally for me, there is a bit of red blood. I went to the doctors yesterday, but I seen a GP that isn't used to Crohn's or any of the drugs. I explained about Humira and infections etc.. but she said as I don't have a temperature and my bp is normal she doesn't think it's that. I had my blood taken this morning but I'm having the worst pains in the world. It feels like I've taken pico-lax or something!! I know everyone hurts etc.. but I'm getting very fed up with the frequency of my flares (So far, in 3 years I have had around 9 months of "remission"). My last option after Humira is a bag, and for a single 20 year old who wants to go out and party, then have a job, then settle down, it doesn't look to good with a bag. And I know people say a bag improves their lives and they feel so much better and blah blah, they arn't 20. I know I'm sounding more and more like a stroppy teenager but I'm at my last nerve with the Crohn's! I also have athritis with it, so walking is being a struggle, I'm always tired, feeling sick, trying to eat, knowing it's only going to come out one end or the other very soon after!I just don't know what to do anymore. It feels like my life has been on hold for the past 3 years (I've missed my A-levels and going to uni, getting a job) and when it finally feels like its getting on track, it messes up again!!!
I apologise about the rant but I need to get it off of my chest, and I;ve probably missed out half of what I wanted to say!
My basic questions are - does anyone else take Humira, and did they have a sort of lapse where it felt like it stopped working? And did they get the side effects of sore throat and swollen inside nose?
These pains don't feel like a regular flare, they feel more intense and I'm going to the loo a lot more than I usually would on one. And I'm not just in pain when I need to use the loo, it's a constant pain, though I haven't actually been sick, I feel sick all the time.
And regarding the bag (I don't know whether I would have an ileostomy or colonostomy), did it make you feel better? How do you deal with it being single- sexually??
Did it make a drastic improvement? Did it really help?
Because I've gotten to the point where I am seriously considering it now.
My consulatant said he won't do a resection or anything as it more or less doesn;t really work, though I would rather try that before having a bag.
Please reply because I'm lost!
Vicky

 

[Nyx]

I can answer your question about having a bag. I had a colostomy in December and it's been the best thing for me. My quality of life has gone up so much that it feels like pre-Crohn's to me. I'm not on any meds for the Crohn's, and I feel fantastic.

I'm not single, but I did have to deal with intimacy with my boyfriend. I was hard at first, of course, but I got over it right quick!! My bag's permanent, so I had to...I certainly wasn't going to go the rest of my life without sex! Turns out that it didn't get in the way, he wasn't bothered by it, and apart from having him not lay on me, it was pretty much normal.

I have to say that the relief I've gotten since having the bag is worth the 'stigma' of having it. I was hard to get used to at first, but now that it's been 3 months I barely notice that it's there. It's amazing what a person can live with

Good luck to you, I hope you get some relief soon, whether it be from meds, or from surgery. If you have any questions, feel free to message me...

 

[Crohn's 35]

HI Vicky and welcome, another lady... I love it.

I was on Humira too about 2 summers ago, worked a bit for 2 months and then weekly shots... it is a bummer, when drugs peter out. You are young and wanting a normal life! I perfectly understand that. I had symptoms as teen but my worst was in my early 30's. I have had two resection in the Ileum, no bag.

Your consultant is right, sugery is the last resort. Being so young it, really is good to try something without surgery. Did you try Remicade? Some people do better on it. Sorry you are going thru such a tough time . Take it one day at a time, relief does help. Try not to stress ok?

 

[LadyVik]

Thank you for replying so quickly!
I tried Remicade but had a severe allergic reaction with that one.
I take a ginger tablet once a day and eat ginger nut biscuits as it helps with my nausea. I did try aloe vera but it didn't really make a difference. I also cut dairy, wheat etc.. which didn't make a difference either.
When I go out partying I don't drink alcohol, which is quite hard to explain when a guy wants to buy you a drink and you ask for a bottle of water lol! I think in the past 3 years I've binge drank a handful of times, but I rather not as the next morning I can't deal with the pain.
I know surgery is the last resort and well, I don't think I have many options left. My last conversation with my consultant was to either consider a permanent bag, or just a temporary one to see if my insides will heal a bit. If I was still with my ex partner I doubt I would mind so much, but being single and figuring out how to tell a 20ish year old guy I have a bag that I poop in kind of puts me off it. Which is rather immature but it's how I feel. I would love to go back to college and then onto university but ever since I've been diagnosed I haven't really had one week where I know I wouldn't of taken a day off because of being so ill. I only just started looking for a job but since last week that's gone out of the window. It just feels like all of my options have disappeared. I would like maybe a re-section but I don't think it's possible with my condition as it's pretty much all over my colon and intestines. I just don't know what to do, which is awful as I was pretty much in control until last August. Now it feels like I have no control of my life, and I'm surviving day by day, not living at all.
God it feels good to rant about these things! I haven't really joined many forums or anything as I used to have my ex to talk about these things with (He has Colitis) or my mum (she has Crohn's, but I've recently moved out into my own flat and she is ill herself so I feel like she's looking after me too much rather than herself). I think I will become a regular user on here!!
Thank you again for replying!

 

[Lydia]

Some people heal up nicely from surgery. I healed up really good with mine. You may find that once you get the bag that you wont care if you get it reversed or not. They gave me the option to leave the bag there, but I decided to reverse it because I was so young. I figured I could get another bag later on if my disease gets really bad again.

As for dating, its tricky, but dont feel you have to tell a guy right away about it unless it looks like its going somewhere. When I had my bag, nobody could tell it was there unless I told them and some people didnt even know I had it until after I had it reversed. It made noise sometimes but I just put my hand over it to muffle the sound.