4 years after surgery and lots of blood

Hi all, thank you for letting me become part of this amazing community.  Its amazing to be able to see the compasion and the shear will for everyone to come together and help each other out in difficult times.  I had the 3 part j-pouch surgery that ended up getting 5 surgeries. I had a hard time throughout all surgeries from obstructions and absessts. But after about 3 months i was feeling a lot better. Fastforward 4 years and out of no where boold, lots of blood within a night and half a day i was becoming close to needing blood. I didnt hurt myself, do anything different than i always have since the surgeries. I wasnt very bright blood like i used to get from my UC.  Has anyone had this happen. Now I'm on steriods after my fun hospital visit where the doctor wasnt really listening, but im having cronic stomach pains in the lower left side, very very very frequent bathroom visits and about half as much blood since the steriods. Also had a ct done and there wasnt any inflamation. Its like out of no where it hit. If anyone can give me a glimpse of anything I'd greatly appreciate it.

With much appreciation,

Nick

Original Post

Yeah the steriods are coming from the hospital doctor that i saw. Its a 5 day regime that i only have 3 pills left granted the blood is less but the pain is unbearable. I just got a appointment tomorrow, i had to switch GI's because my first GI had horible bedside manner and would never listen to me and he almost killed me because of it.  I did have a ct scan and they didn't  see any inflamation but i dont think they where checking everything that they should. For the amount of blood i was loseing i would have called a specialist right away if i where the doctor. Have either of you ever heard of this. Im starting to be convinced thatvit is crones and not UN.

Thank you so much for your responses i have been scared to death because it feels like all the problems i had during surgery are coming back. Its overwhelming. 

There are so many things this could be, including Crohn's. Hopefully your new doc will be a better fit for you. I hate it when docs don't listen and try to make you think you are dreaming or something when you have real symptoms. A five day course of steroids won't hurt you, but certainly won't get to the bottom of things.

Jan

I heard the doctor i am seeing is pretty good so hopefully he is one of the doctors that will actually listen to me.  Yeah the steriods didnt change the pain but did help with the bleeding a lot. My last bathroom visit was actually had significantly less blood but i still have this horrible pain in my stomach like someone left a knife in me. If i twist or get up out of bed its like a sharp tearing pain.

So im getting a endo and colon scope tomorrow, my new GI believes i have pouchitis or a ulcer in my stomach from the ibuprofen ive been taking for back pain. But she wants to make sure before giving me meds. She actually listened to what i said!  I had a picture of the blood that came out and i was gonna show her but she told me that she believed me and that she was going to take good care of me! The relief I had after she told me that was what i needed. If anyone is in hampton virginia or in the area i highly recommend Dr. Robin L. Corbett.  She is amazing.

Scheduling you for a gastroscopy and pouchoscopy should have been the first thing your previous doctor was supposed to do, at least this is what most doctors would do in my country unless the patient was critically ill and couldn't  handle the endoscopic examination.

Anyways, I am happy to hear that you are on the right path now ��

Oh my gosh! I didn't know you were taking ibuprofen! Your doctor should have suspected that as the most likely culprit right away, rather than throwing steroids at it. Hopefully, that is the case and withdrawing the NSAIDs will reverse the damage. Of course, even if there is pouchitis or ulcers, you can't know if they are due to the NSAIDs or IBD.

Jan

Alright so i have a appointment with a sergeon to open up my jpouch and cuff because the firat surgeon made it too small. Now witb the meds that the gasrto gave me im not having diarrhea anymore but because the exits are so small now im constantly bloatedwith a constant dull pain and it is extremely painful to use the restroom. So i have a appointment in just over a week for my consultation and finally get this over with. Sorry for such a late response. Ive been running all over and have finally had the time to site down and let yall know whats going on. I hope all of you are doing well and have a great day.

Nick, I hope the surgeon is taking about a stricture (as Marie asked). Strictures are a bit like a rubber band around the tube (intestine), constricting it. Strictures can be dilated, cut, or removed completely. If you get to know what's going on in more detail, you'll be better equipped after the procedure. Even if you develop another stricture they can often be kept open enough by regular dilations, which many folks do at home. 

Good description Scott. In my case the stricture kept forming and even dilation under anesthesia didn't work. The cuffitis kept causing them. Balloon dilated one week during a j-pouch scope and the next week it was taken care of by the anesthesia route. It was back in a few weeks. That was not the normal outcome. I was fully prepared to self dilate.....wasn't going to work. They took care of one further up in the j-pouch with a balloon dilation during a scope and that one remained open. 

There are several ways of taking care of them.

Hi everyone sorry i havent responded just been hurting really bad and have been trying things to keep my mind off it.  I go in for scope again tomorrow. I dont believe he thinks im in pain, i believe he thinks im a drug seeker so  im screwed either way. But hopefully he can see whats going on and understand why i hurt. I just dont understand why this all happened but we should get down to it tomorrow morning. Thank you all for the support you all have shown me. Finally people that understand all this. Thanks again and ill try to let you all know whats what tomorrow morning. Hope you all sleep well.

So i hurt before the scope now after tge scope i hurt evwn worse. I get told im not getting a bote for work or any thing to help with the pain. I was crying in pain after the scope an .  Its like they dont care. I just dont wanna hurt anymore. I just want to end it all. I cant stand the pain anymore. I still have to wait two weeks till i get the results back. Idk if i can wait that long. I just wanna give up, i cant take it anymore 

An you get into an urgent care Office? You just had a procedure that left you in pain! I use to have a prescription for 800 mg ibuprofen- before it was approved for OTC at 200 mg. I have taken up to 800 mg when in bad pain. I know it is an NSAID but even the Mayo Clinic gave me ibuorofen after my surgeries. If an emergency........ you might want to look it up.  Also Tylenol was given to me with ibuprofen, alternating. It helped a lot. You just need to not go over the max Tylenol or it is bad for your liver. 

Please hold on.

 

I cant take ibuprofen because of the ulcers it gives me and my GI told me to stop it 100%. ive tried Tylenol it doesn't  even touch it. Ive tried Advil, nothing.  They didnt give me anything qhen i left like no perscriptions nothing just follow up with my sergeon in 2 weeks.  I tried to talk to him before the scope and anything i said was just shrugged off with your fine.  And i told him i never had a back problem before the sugeries and now i do after the surgeries i told him ive tLked to mulitiple people rhat had the same problem because of pouch location or aomething was wrong and he told me i cant believe the internet. He jist doeant care and im afraid that because i had so many problems with the last surgeon he doeant want to touch me. So i dont have any options but pain. I think I need to go to the hospital but juat like last time they wont do anything. So whats the point. This is ridiculous ive tried all types of pain relief that you dont need a prescription for and hasnt done anything to help.  I just dont understand. If there is a surgery to do ill do it. I dont just want pain meds i just want to be fixed so i can enjoy my life. Thats all i want. I guess thats to much to ask for, for a doctor to help you.

You say you can't take ibuprofen, but you took Advil, which is ibuprofen. You could be making things worse. Also, I don't remember you mentioning back pain before. Why not see your primary doctor about the back pain? It may not be related directly to your surgery. My back pain was related to my UC, not my surgery. If you go to the ER they do not deal with chronic issues, but just patch things up and send you home.

Jan

I didnt know advil was ibuprofen. I thought it was different. The back pain only started after the sugeries. Ive been to osc (orthopedic spine center) i had xrays and mri's and no one could find what was wrong. I never had back pain in my life till the surgery. I mentioned it to my sergeon because of what i heard even though it wasnt a pressing matter. My pain in my lower stomach area is the pressing matter. My gi told me to go to the hospital but i know it wont work.  And no matter what im just hurting and theres nothing i can do.  So im heading to the hospital with all my stuff from the scope. 

Jan dollar please look at my 2/20/17 post where i mentioned i was taking ibuprofen for back pain. Its really hard to mention everything that ive been through all at once. Im writing everything down so i can bring it to the hospital and the surgeon.  When you talk to them its like they dont have much time to talk to you and i was rushing to try and relay it all at once and im not able to tell it all. I realized i have been very mean on here and thats not me.  I just hurt so bad its all that comes out. I am sorry for that.

OMG I don't understand why they couldn't prescribe you a small quantity to last until Monday. Please try a heating pad and/or soak in a hot tub. No one there understands what you are going through. I would probably take 800 mg of ibuprofen because I can't take all that pain.  My GI's nurse told me to go to the ER if in pain. He wouldn't prescribe me anything. My PCP got upset when I saw her and prescribed me pain medication.  I know this doesn't help you right now but hopefully you can get some relief soon.

 

I wish i could take ibuprofen because it was the only thing that would help a little.  But since i was getting ulcers in my stomach my GI said no more ibuprofen. The prescription they gave me was for 325mg Tylenol which when i went to the grocery store was the lowest they had.  I feel like moat doctors love to see you in pain.  Im still in so much pain and ive been in bed since last night.  Only time i get out of bed now for is to use the restroom. I don't understand how this is ok. I bet if the doctor was in pain they'd get whatever they want. Thats the part that hurts the most really. Thank you for your support TE MARIE

325 mg Tylenol? They gotta be kidding.....J-Pouch Nick, do you have Analgin 500 mg  (metamizole sodium) in the US? It's GI-system friendly. I use it when Tylenol fails to relieve my pain. It's OTC in my country, but I don't remember having seen Analgin in the pharmacies when I was in the US.

So i finally got in touch with my GI tells me i need to do these 2 test to find out why im in so much pain. The 1 test is 2 weeks away. The 2nd is a month away. I ask if theres anything to do for the pain now. I was told well thats why we wanna do the tests and i said so i have to be in horrible pain for 2 weeks before youll find out something. And she said go to the er if i hurt or take Tylenol. Am i supposed to go to the er every day so they can tell me we don't see anything on the xray go home and take Tylenol. And waste anither 50$. What is wrong with people. They could atleast expedite the process you know. I need to get a pcp but since i got new insurance and ive been fine for 4 years i never got one but i bet he wont do anything for me because ill be a first time patient.  Ive tried every over the counter pain reliever and nothing has worked. I Just cant believe this. I dont know what to do anymore. Please does anyone have a idea of what to do. I need help badly. I am really scared that something bad is happening in my lower stomach area and its like no one is willing to help me. Please any thoughts would be great right now. Anything at all.

Thanks,

Nick

I have no time to read the entire posts (only read the first), but just want to tell the op that I had LOTS of blood (believe me, really all-red flush in the toilet the night I was in the ER) after about 5 months of surgery, they told me it was pouchitis, I treated as pouchitis (antibiotics course, ciprofloxacin and metronidazole together), and it times it disappeared. Then I continued to routinely (one course a month) take antibiotics. I'd call it chronic pouchitis. But the important thing is I feel as healthy as I need and at the time (4 years after) have no restrictions in my life. Wish you the same !!

That is a good idea ask for antibiotics ahead of the test. Some are prescribed for stomach ulcers. Also you can take up to 2400mg of Tylenol a day so take 500mg a time. I don't understand why he didn't prescribe a suppository or something after seeing inside your j-pouch.  I would call daily and ask this plus tell them the Tylenol isn't working and ask for tramadol at least.  The squeaky wheel gets oiled so keep calling and ask to speak directly to the Dr. I have heard of others that go to the office and stay in the waiting room to catch the doctor. I think that would be too uncomfortable......but you get the idea.

Please get a pcp and explain that your GI doesn't prescribe pain meds. You are only asking for enough to get your pain reduced until the tests. You need to get established with a new pcp anyway. My gi's never prescribed anything other docyclomine (spelling?). You are in agony

Hi TE im already on cipro and im taking 500 Tylenol. Had a friend run to the grocery store for me. They cant prescribe me tramadol because im extremely allergic  (seizures) from it. Ive been calling non stop and voicing my concerns and they aren't going to do anything or expedite the tests.  I believe they think im lying which if i was a drug seeker how do you constitute the last 4 years i was on nothing beside otc ibuprofen.  It doesnt make any since to me. I havent had for than 3 hours a aleep a night from bathroom visits and pain. I feel like im losing my mind and don't understand what changed that caused this. I havent changed my eating habits my physical strains or anything. Hmmm its frustrating.  Thanks again TE MARIE 

Seizures are Scary! Have you asked them why they think you are asking for pain relief for the 1st time in 4 years? This is the first time the OTC pain meds have not worked. Some take Flagyl or other antibiotics together.  Just saying that they are not exploring all of the options yet. The doctor gave you steroids and you still have blood in your stool!  If it is cuffitis I bet that is not picked up in a CT scan. That is why more tests are ordered, right? My cuffitis caused blood and pain. Sorry I can't help you out other than doing all that you are. 

I feel fortunate that my pcp doctors have prescribed me pain meds the last 7 years. 

You really need a primary doctor. Your surgeon and GI only focus on their areas of practice. ER departments focus on emergencies. 

My back pain started a decade post op. I could not take ibuprofen anymore due to liver inflammation. My primary referred me to a rheumatologist. That was when I was diagnosed with IBD related (enteropathic) arthritis. All my labs and imaging were negative. Certainly, the fact that you have abdominal symptoms in addition complicates things. But, you need doctors of different areas of expertise, and the PCP can refer. He can also prescribe appropriate pain medication in the interim.

I hope you get some answers soon.

Jan

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