Dark days are back

[Shane]

I've been on Infliximab since November which has kept me off the Prednisolone and I have been feeling great. I thought the bad times were behind me, until yesterday.... My bm's have dropped off the chart, as bad as they've ever been, I feel awful, can't eat, sleep loads and the cramping is returning. Looks like I'll need to start myself back on the Prednisolone soon if things don't improve. If I do, I know my Consultant will stop Infliximab and I'll be back to square one and possibly facing colectomy and stoma bag. Feeling a bit down now.

Shane

 

[drew_wymore]

I'm so sorry to hear that Shane. But keep your head up and think that things will get better sooner rather then later and that you'll be able to avoid surgery.

You'll be in my prayers that you heal quick and start feeling better. I love this forum cause we can be here for each other when things go downhill and we support those who are sick when we're feeling well.

Sending good vibes your way and wishing for a quick recovery mate.

Drew-

 

[Guest]

sorry to hear that shane maybe its just a bad patch and things will settle down again soon - i hope so.

as much as nobody likes the prospect of facing surgery, it might just change your life so much for the better, if you did have to have the op, that you may even wish you'd had it done sooner.

either way - i hope you feel better soon, and get back on track.

 

[Kev]

Stay with the Infliximab until you meet with your consult. If/when your consultant takes you off the Infliximab, surgery may not be your only option. Perhaps he/she will be ameniable to trying LDN. Or perhaps they'll recommend Humira. Perhaps this is just a flare, and will settle down. You have only been on the Infliximab less than 3 months, it may not really have had a chance to do it's thing yet. You might have been in a quiet period, perhaps due to the pred.

Could be lots of things... Take a moment, see your consult, don't hit the panic button just yet. I'm sure there are other options open to you, and even if not, many folks have faced the same decision, had the op, and loved the results.

 

[Shane]

Thanks everyone, your support means alot.

My Grandmother has Crohn's and has had an Ileostomy bag for about 40 years. She's convinced that the only way I'll get better is to go down the same route. I'm only 30 though and it's a big step when I think that I'll have this thing stuck to me for the rest of my life.

I'm feeling slightly better today although most of the symptoms are still around. Fingers crossed I can avoid going back on the Pred.

On top of feeling ill, my daughter (who lives with her mother, not me) was taken into hospital last night with severe dehydration from a bad bout of 'suspected' Gastroenteritis. Just looking at her in that bed brought it all back to me, thinking how similar her situation now is to mine when I was first admitted to hospital. I think I'd be jumping the gun to start taking too much notice of the obvious type of thoughts that are going through my head now. But, I made sure the doctor knew of the family history with IBD, just in case. Out of interest, does anyone know the odds of a child of someone with Crohn's developing the same condition?

 

[Guest]

glad you're a bit better today jeff

no - i dont know any parents and offspring who both have crohns, but i do know a few siblings who have it. & its interesting that your grandmother had it - i have heard it said that it skips a generation, although the tendency to gastro problems can run through the family.

i hope your little girl is ok soon, and that it is just a one-off (there are some really nasty stomach bugs flooding through the uk just now), but you did the right thing alerting the hospital staff to your condition.

 

[Ilysha]

Hi Shane,

My grandmother had a colostemy and bag for 40 years too, from colon cancer, not crohns though. I am grateful she had passed away when I was diagnosed. I think it would have been very hard for her to deal with. It did skip a generation with me too. My mom has always had IBS issues, but nothing as major as Crohns or colon cancer, thank goodness.

I went to a seminar recently about reproductive issues and IBD. I belive the incidence of a parent passing it on to a child was about 10-15 %, so not really high, but no very low either.

I hope you and your daugther are both well very soon. I wonder if your doctor can up your remicade dose. It's worked very well for me the last few years, but I have had my dosage increased incrementally.

Warmest wishes,

 

[MarkyB]

Shane - sorry to hear you've taken a turn for the worst. I've been on Infliximab also since November, but to be honest I haven't seen much benefit. The BM's have slowed a bit with less 'D' but as for my Arthritis, it has not made any difference. I will be going back to my Specialist on the 22nd Jan to discuss how my first three infusions have gone and I was wondering where to turn next? Let me know how you get on and the options you have available to you. (I haven't stopped taking Pred. only 10mg) - Mark

 

[Shane]

Thanks everyone, I'm pleased to say that I'm continuing to see a slow but steady improvement this morning.

Mark, I'm sorry to read Infliximab doesn't seem to be working for you so far. It's early days though, give it time. I suppose I was lucky to see a fairly quick improvement before this latest set-back. Hopefully I can get back on course now. I'd be interested to hear how you progress, and I will keep updating how I get on in the future. Good luck for the 22nd.

Shane

 

[Kev]

Well, I've heard two versions of that... One from my GI, as I was worried about the added risk to my sons; the other from a columnist who did NOT state her sources.

My GI told me the added risk factor, heriditary wise, was only a modest 10%, and if my children had been exposed to lots of A/B's, then culminative risk up to 20%.

However, in the column from that newspaper reporter, heriditary risk factor was given as a 10 fold risk. I e-mailed her to request clarification, asking her where she got those figures from. To date, I've had no reply (responsible journalism???). The wide desparity (sp?) makes me feel that definitely one or the other is off the mark. However, at this stage, I'll go with what my GI says.

 

[Shane]

Thanks Kev. Yeah, I'd be inclined to go with the 10% over the 10 fold risk.

Well, I'm continuing to improve and my daughter is out of hospital now and is getting better. Things are looking up.

Shane

 

[saidinstouch]

I've heard 20-25% so its prolly in the 10-20 range

 

[Darkeffx]

My first guess would be that "10-fold risk" would mean 10 times more likely than someone with no family history, so its possible they're saying the same thing. Reporters tend to like to phrase things in the most sensationalist way possible, and talking about medical risks like that seems to be a common favorite from what i can tell.

 

[Kev]

no, there's a whoppin difference between 10% increased risk, and 10 fold or 10X.
Like, if the numbers in my neck of the woods say a person has a typical risk of IBD of 1:300 Then a 10% increase would mean my chances (due to heriditary risk) is now 1:270 Now, if my heriditary risk factor is combined with hi use of anti-biotics as a kid, to 20%, then my risk is 1:240... not 1:135 Least, that's my take on this