Help for the Horrible Pain!!

My son has been in a flare for 2 months now. A quick burst of Pred. helped, but then things quickly worsened on the quick taper.

Monday doctor started him back on 40mg so it has only been 3 days at the dose so far (today will be the 4th).

He says he is having the WORST cramping ever when he goes to the bathroom!! Says it is so bad he feels like he will throw-up or pass out. Please don't scare me with more stories but rather could you share what helped.

Thankfully when he is not in the bathroom the cramping subsides, but he is in the bathroom about 6 times per day.

Can you look at his drug list below and see if anything stands out as causing the sever cramping, or is the just the UC?

The doctor had given him Clindex that is supposed to kind of help, but really isn't (I wonder if it is making it worse as it is supposed to kind of slow things down/ease spasms). I've never seen it mentioned before on an IBD board. It is supposed to be an IBS medicine. Son doesn't have IBS at all when in remission. Is there something stronger/better to help with the pain.

I am so hopeful the Prednisone will kick in soon. I HATE the drug, but love it when it works.

Thank you so much! It is so hard when I hear the bathroom door shut and know he is in such pain and there is nothing I can do about it.

For some reason my signature won't update. Here are his current meds:

Mom of Son 19 UC dx at age 10, Lailda x4, Azasan 175 mg, Prednisone 40mg, Clindex, Flagyl, Rowasa, Cortifoam, Zyrtec D, Currently flaring :(

I've put a call in to the doctor and hopefully he will call back with something to help.

My little one loves the heating pad, but she has pain all the time when flaring, my son's is mainly when going to the bathroom. I'm not sure the cord would be long enough to reach to the toilet or if it would heat up fast enough to help. I don't think he has much advanced notice of when he'll have to go to the bathroom :(

I think his pain is worse now than when he was younger because he has advances from just left sided colitis to pancolitis over the years.

Last night was his 4th dose (well, 5 but night 2 it came right back out) of rowasa and today is day 4 of 40mg of prednisone, so hopefully he will be getting some relief soon!!!

I wonder if his dose of Pred is high enough for his size. He took 40 as a child under 100lbs. He is now 6'4" and weighs 190.

I just don't want him to hurt so bad. I think his physical pain hurts me almost as much emotionally if that is possible (it sure feels like it is)

Thank you for replying. I will definitely pull out the heating pad if it increases to other times!!

He may be having bad spasms, try an enteric coated peppermint capsule, it's all natural and has been proven to relive spasms as well as drugs like Levsen.

I'm so sorry your kids are going through this. I just got diagnosed myself two weeks ago. I have 3 kids and I worry about them possibly getting this.

How about trying either peppermint tea or chamomile tea? Peppermint is good to break up gas and chamomile is an anti-spasmodic. I have more success with using chamomile. I also use a heating pad that I warm up in the microwave. That seems to help a lot too. Even soaking in a warm bath seems to help.

I know you said your Dr wouldn't give you any pain meds, is this your GI or Primary? Of course, I'm not a Dr. so I don't know the thinking behind not giving it to you. Could you ask again?

I use Tramadol 100 Extended Release for really bad pain. Its pretty easy on the body as compared to other pain meds. It never took all the pain away for me, but I can tell you it takes the edge off the going to the bathroom pain.

I seriously can't imagine not having it.  And I guess I should add that I had to demand it.   And having him wait through the weekend for a scan with no relief.  I would really try and call back tomorrow.   Maybe and just ask for enough pills to get him through the next week. 

Every doctor is different in their approach and attitudes. My husband had a very sympathetic local GI doctor and would prescribe pain medication but when it got to the point he was still having breakthrough pain she referred him to a pain management specialist. He needed to see him every month - be monitored - random drug tests etc. He was on a Fentanyl pain patch supplemented by a low dose Oxycodone 3 times daily along with Gaba Pentin (for the nerve endings).

This helped him for about 2 years...fast foward to June of last year when it was finally decided and accepted by him he needed surgery as he failed Remicade from Jan thru May that year and his options had basically run out.

One thing that did help him previous to that regimine was the prednisone initially. But every time he tapered off it would flare again as he became "steroid dependant". One thing I learned from this forum was to insist on a VERY LONG SLOW TAPER and that final time he successfully got off the prednisone. Prednisone and him did NOT get along at all...the side effects were numerous and I went out of my mind along with him during that time.

When he got off the prednisone he was on 12 asacol daily and 200 mg of azathioprine and trying to do the rowasa enemas but eventually it just didn't keep things under control. His normal at the time of trying the remicade was not really good. We had so much hope that the remicade would be the answer for him but it wasn't. He was not going back on prednisone for anything since it never worked long term and so very difficult to wean off of it.

The pain medication while it helped just masked things and put off the inevitible for him. That is not to say that would be the case for your son. I just find it very difficult for the doctors out there who are adamant about not prescribing pain medication. I know it is not the best case scenario to treat this but it is horrible to watch those you love in so much pain too and not fair to make them endure it.

Maybe a higher dose of prednisone with a very long slow taper could help? Also, Many doctors do NOT want to be held accountable for prescribing the heavy duty pain meds hence a pain management doctor/facility is a way to handle it due to the rules and regs they need to follow. Of course I am talking about a GOOD pain management facility and not some of the quacks out there pushing pills or pill mills as they are often referred to. Good Luck.  I hope this helps.