I wish I could help more....

[PennyLou]

Hello Everyone... My name is Penny. My boyfriend has recently been diagnosed with crohn's disease and so this is my story, being the person who loves him so much and watches him suffer every day. Don first became ill October of 2009. I rushed him to the hospital on halloween thinking he was having a heart attack. At that time the doctors came up with pancreatitis. He was given pain meds and sent home... Since then there have been very few days that he has felt well. We have been to the emergency room more times than I can remember with horrible stomach cramping and so much pain he could hardly move. He has had an upper GI and colonoscopy and cat scan done and some blood work and finally came up with the diagnosis of crohns. Just in this past year things have really fallen apart. He has been so weak and tired and in so much pain, he has been unable to work. I rarely can even touch him and though we still sleep in the same bed, I know it is very hard for him because everytime I move he hurts. The doctors have put him on a few different meds which side effects leave him feeling dizzy and half drunk sometimes but he prefers that over the severe cramping.

The doctors say that they caught this early, and his crohns is mild, but for us... its anything but mild. From what we are told, his crohns is in the small intestine and they say that the walls are thickened... if that makes sense to you... I wish there was something I could do to make this easier for him.. I can tell that he is slipping into a hard depression from this already. I have read many things on crohns and it seems that we ( mainly he) have a long road ahead of us. Any words of wisdom or encouragement are greatly appreciated.. Is there hope for getting the pain under control?? Even just last night, we were at the doctor because he was peeing blood and he was cramping so bad, they just sent him home with pain meds again.. Sorry I'm jumping around a lot but it just has been a lot to take in. Being a family member of someone with this disease is hard too... I cant imagine what you all go through... Thanks for having this forum.

 

[mikeyarmo]

Welcome to the forum Penny!

I am sorry for all the pain and suffering you and your boyfriend have been through over the past couple of years. I commend you for looking for information to help him out.

There are definitely low points with this disease as you and your boyfriend both know. It is important to recognize that those are just temporary and things do get better. There are many IBD Success Stories from the members of this community (click the prior link to see the sub-forum dedicated to success stories). Personally, my Crohn's also expressed itself in my small intestine and thngs got progrssively worse over 3 years (especially the final year). For the final 3 months or so I could not tolerate any solid food. I eventually had surgery and literally overnight felt better. That was about 5 years ago and while I have had a few bad days here or there, I have been 99% symptom free since.

Surgery is not an option everyone is willing to go through and has it's pro's and con's, but I just wanted to share my own story to show that things can literally change overnight. I was pretty down when my condition was bad also, but I always knew that one day things would be better and that kept me going.

I hope you and your boyfriend both know that things can get better and there is no reason to assume his suffering is last forever.

I encourage you both to look throughout the various forums to look at other people's stories and learn about other treatment options. We also have a Support Forum where you can vent with others who know exactly what you and your boyfriend are going through.

Good luck Penny and I hope you and your boyfriend get a lot out of this community.

 

[Crohn's 35]

:welcome: Penny from another Penny! I have crohns and in the same place your bf has. When times got so bad and there was no relief I too had a resection. I had laproscopic surgery and very small incision, I was painfree for 7or 8 years. As Mike points out, surgery is sought to be the last resort but in some cases surgery it required. Hopefully he doesn't have alot of infected areas. Thickening is usually narrowing or scar tissues as well as heavy inflammation. Strange the docs are saying it is mild crohns.

I would suggest he get a new Gi or second opinion. He shouldnt be bleeding and in so much pain that is not normal. Is the blood red or dark? Hope he gets some relief and Kudo's for you being here to help him. He is really going to need your support.

Is he on any medications now? Pain meds help but he needs treatment. :hang: you will get lots of help here.

 

[David]

Hi Penny and welcome,

I'm so sorry your boyfriend is suffering so much but he's lucky to have such an amazing person as you. A few things that came to mind as you were posting:

1. If he has not had his vitamin B12 levels checked, get this done pronto. If he has, what are they?
2. If he has not had his vitamin D levels checked, get this done pronto. If he has, what are they?
3. Just pain meds for peeing blood is absurd. I assume you went to an ER or urgent care? If so, talk to his GI about this please.
4. What medications is he on at present?

I wish you and your boyfriend well.

 

[Angrybird]

Hello Penny and welcome. I would say you are already doing all you can for your bf, you have come here to get advice and that means a lot. Some people would have walked away before now but you haven't. I second all of David's questions and would also query the diagnosis of mild crohns if he has this much pain. When was the test done that showed the thickening? It is was a while ago this could have got worse and turned into a stricture, I had one recently and was in agony. This does mean surgery but afterward the relief from the pain is overwelming. My thought's are with you both and I hope he gets the treatment he needs soon.

 

[PennyLou]

Thank you all for your input. We don't believe he has had any testing done for the b12 or D yet but deffinately will be asking the doctors to do so.. His current meds that he is on is Pentassa, which is 4 weeks now and not seeing any improvements, Bentyl- which seems to lighten the cramping some, prilosec, and flexeral for the next day or two. We were in the ER last night because the cramping was terrible so they gave him the flexerall. He also gets prescribed tramedol and narco sometimes for the pain but the doctors just look at him like he is a junkie!! so frustrating... He really doesnt even like them... i have to make him take it when his cramping has him in tears..

The one big difference with his crohns that i have noticed in reading some of the storys is he doesnt have an issue with diarhea really, its usually the opposite. He wont go for days and days then when he does, its a long day of sitting for him.

He does have some other symptoms that we dont know if they are related but maybe you all could be some insight...

He seems to have poor circulation as he has numbness and tingling in his arms and legs, of course the non-stop cramping and back pain, sometimes he has what he considers "chest pressure" and his heart seems to beat harder. Sometimes his poo is like lava rocks as he discribes.. joint pain, and muscle spasms in his legs at night ( which is really the oddest feeling, I can even feel his muscles quivering) tons of chills and sweats.

I am going to see about getting him into see a different doctor for this. We are pretty frustrated and unhappy with the treatment thus far.

 

[David]

It's not a circulation issue, I'd bet good money it's peripheral neuropathy from vitamin B12 deficiency or possibly a calcium deficiency (get that checked too). The body pain could be from vitamin D deficiency and the leg spasms could very well be due to low magnesium, get that checked as well.

Proper supplementation and monitoring of vitamin and mineral levels is absolutely vital for any Crohn's Disease patient.

Demand these be checked and please let us know what the results are. Get his levels, don't let them do a, "They're normal". Get the actual levels for each and share them here.

 

[PennyLou]

So Don's doctor is finally back from vacation and absolutely no help at all!!! With all the problems he had this weekend the only response was " we dont think this is GI related and you should consult with your primary doctor." The thing is, the primary doc says you should see your GI doctor, SO FRUSTRATED WITH DOCTORS PASSING THE BUCK!!! We are now changing clinics, hospitals, specialists, and whatever else we need to change to get some answers.

David-- we asked the GI to run those tests and they dont feel its necessary since this "issue" isn't GI issues.

If anyone has any recommendations for doctors in Minnesota that would be great.

 

[David]

Yeah, it's time to get a second opinion from another GI.

Here a couple highly rated Minnesota GI doctors (the ones at the top) as submitted by members of this forum.

 

[KWalker]

Welcome Penny! First off, you're boyfriend must be pretty lucky to have someone like you who is helping take care of him and are concerned for his health so Kudos to you!

His G.I. is telling him his issues aren't G.I. issues? He doesn't seem like a very good doctor. David is right, he should definately get his B12 and Vitamin D levels checked as those could make quite a difference. I was just in the hospital for crohns actually where doctors too were passing the buck going against eachother and complicating everything. There are some good quality doctors out there though so don't give up and you guys will get the treatment he deserves.

Also, there are also quite a few people on here who never have diarrahea and like your boyfriend, have quite the opposite, so he's not alone with that.

Best of luck with everything and don't hesitate to ever come on here and ask questions. We will do whatever we can to help you guy and we have some very knowledgeable people on here.

 

[PennyLou]

Today Don went to a new general doc today... he gave him some flexerall for the pain which really helps much more than even the narco. He asked him to do the tests for the vitimin deficiencys but he said that is something that the GI doctor has to order those. We are looking for a new GI doctor that is close to our area...

 

[billyjoel]

Some have already mentioned this, but PennyLou that does not sound like "mild Crohn's". I would suggest a new doctor, and reading the post above it sounds like you are already searching for a new GI. Welcome to the forum!